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The Back Story Continues

(1000 Posts)
Matildathecat Sun 09-Feb-14 06:04:22

This is the support thread for all sufferers of back pain. Everyone most welcome to join.

Here's our first thread

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story

My story long and grim but basically had failed surgery for disc prolapse, then further failed surgery to attempt to salvage the situation. I have nerve root damage and severe scarring around the nerve at L5 which won't get better. I'm 48, can't work, take a lot of drugs and have a blue badge. Currently battling several different agencies for ill health retirement and other benefits.

But I'm ok, having some fun despite the pain and have made some lovely friends on here.

Please post and include your story if you'd like to. No niggles too small, this is strictly non competitive! smile

PavlovtheCat Sun 09-Feb-14 08:51:10

I stupidly posted on the other one, I should have done a linky! So I just emailed MN to ask them to let us go over 1000 so we can link to this thread, and then we won't lose people hopefully.

GoodnessKnows Sun 09-Feb-14 08:53:47

Waving!
Tea, coffee or hot chocolate, anyone?

LostInWales Sun 09-Feb-14 08:54:15

Morning! You aren't shaking me off that easily, us crap back owners have a lot of spare time for the
Internet you know wink.

morning ladiesgrin

LostInWales Sun 09-Feb-14 08:58:35

Caffeine in any form always welcome grin.

I am the owner of a newly minted 14 year old this morning. In the last 12 months he has got about 8 inches taller and acquired a proper deep voice. It's amazing, plus if I ask him 'what does mummy say?' he pings straight back with 'look after your back'.

I'm watching the women's snow boarding atm, looks brilliant fun, we'd all be fine doing that right?

GoodnessKnows Sun 09-Feb-14 09:04:02

Can I offer anyone fresh fruit salad or croissants?

PavlovtheCat Sun 09-Feb-14 09:11:01

My story is that I have had partially successful discectomy and laminectomy in June 2013, due to prolapsed disc at L5/S1 and am battling professionals to hurry up and tell me what is going on now as pain has increased again, seems to be related to continued damage to the disc but possibly not the suspected re-prolapse suspected, but Its all a bit slow. I have, in addition to the prolapse, a misaligned vertebrae (retrolethesis or something like that) at L5/S1 which most likely contributed to, or caused the prolapsed disc. I have chronic back and sciatic pain which has increased over this last few months, and have flare ups that increase both back and leg pain to unbearable then subside to bearable. I am on lots of medication which I resent, hanging on to my job by the skin of my teeth and I too have a blue badge!

PavlovtheCat Sun 09-Feb-14 09:14:44

It took me so long to post my long winded story while dealing with two fighting children, you lot all posted first!

I have real <caffeine> as DH has just made a fresh pot. Anyone want some?

GoodnessKnows Sun 09-Feb-14 09:21:54

Yes please. With skimmed milk. Surgeon's team tell me I need to stay light as primary aid to keeping further problems at bay.

I've got chronic bone erosion and disc erosion. Where n what is in my notes. I've got a whole folder's worth within 8 weeks! I also have osteopaenia and an underactive thyroid.
My tumour (low grade sarcoma) was found 8 weeks ago, removed on 28/1/14 and I'm now home after am 8 day hospital stay. Going home presents:
Daily Medication Chart: oxynorm and oxycodone get emergency repeat prescription!

(IF NEEDED. Up to 4 x a day (every 2 hours LEAVE ONE for night) oxynorm. Already charted)

*On empty stomach as wake: 1x Omeprazole
8am.
Gabapentin x 1.
Paracetamol x 2
Thyroxine x1
Oxycodone x1
Movicol x1 or 2 sachets
AFTER Banana. 1x ibroprufen

12pm
Paracetamol x 2
Movicol 1 or 2 sachets

After lunch:
1x ibroprufen

2pm Gabapentin x 1
Docusate-sodium x 2 caps

8pm
Oxycodone x1 dose 10+5 mg
Paracetamol x 2

10pm
Gabapentin x 1
Amatriptyline x1
Paracetamol x 2
Docusate-sodium x 2 caps
Senna x 2
After banana. 1x ibroprufen

Just before sleep:
Oxynorm x 1

Matildathecat Sun 09-Feb-14 09:24:46

Caffeine? Why yes if it's too early for a drink! I'm sitting by the pool but under the veranda because it's a tropical rain storm but sipping a cuppacino and feeling pretty content.

Hardly dare to say my pain is good. No codeine yet and its gone five. Injections or environment plus zero housey stuff? I guess I will know next week. Boo.

Welcome aboard everyone. Post your own back story asap then it will be easier to refer back to individuals IYSWIM.

GoodnessKnows Sun 09-Feb-14 09:26:45

I usually avoid even taking a paracetamol. Oh, and I'm a workaholic. Currently in bed, laying on my side. Not sure when to return to work and how. I work for myself. I tutor children in my dining room. Easy. No idea how to start up again. I'm such an all or nothing person. I'll figure it out, I'm sure.

And I bloody well need some sort of pain team to help with guiding me when suitable to come off these meds (how, which ones, in which measure).

Not convinced my GP is able to do this competently. May be a trust issue but it's my gut feeling/ worry.

livelablove Sun 09-Feb-14 09:27:35

Morning everyone, a coffee and a croissant for me please! Hope you are all well this morning. Happy Birthday to Losty's son hope he has a great day!

I am hoping to teach my dd about looking after her back. Dh and I both have problems as well as my dm and dgm - even our dog has a bad back!

Off to look at back friendly chairs today and visit dfil who has the worst chairs ever. They are really old and uncomfortable. Poor old chap he has a bad hip too i am trying to persuade him to get new ones.

Between shoulder blades pain since childhood(various diagnosis I've settled on who knows?).
Diagnosed with probable psoriatic arthritis /inflammatory spondyltis in last five years and developed severe sacrolilliac pain (lower back).
I have issues with other tendons / joints but the back pain is the one taking over my life. Awaiting results of January mri, having about as much luck as Pavlov on that front.
Currently take full dose paracetamol, codeine as needed but hate it, celebrex 400mg per day, sulfasalazine and methotrexate. lansoprazole to protect stomach.

Frustrated at constant pain, struggling to work, parent and dare I say it maintain the basics of a functional relationship. sad

TickleMyTitsTillFriday Sun 09-Feb-14 11:16:25

I feel like a total fraud being here, but some understanding people and support sounds good! I fell down the stairs nearly 4 weeks ago and have had an xray which shows nothing, thank god, but I am struggling with the pain.
I tried to cut down on tramadol yesterday but didnt last long.
One bad thing is I can't drink on it and I am desperate toget a bit tipsy so I can laugh!!
I had two weeks off work and am back half time now as sitting down is excruciating sad
I do the exercises and go to a chiropracter but I would have expected it to be better by now and I have no idea what I have done sad

LostInWales Sun 09-Feb-14 12:25:12

Wow denial, are you me? We have such similar problems!

I have had thoracic (between the shoulder blades) pain since my teens, first showing up on x-ray in my mid 20's as bony spurs. This is the main source of my pain and has been the most frustrating. In the last 4-5 years I have also developed pain (pain? That word doesn't even come close) in my SI joints, feet/ankles/hands/wrists/shoulders, on a bone scan I have severe degenerative change the length of my spine (sondylitic) and my SI joints and degenerative change in every other joint in my body apart from my hips, which is random but nice. I go to rheumatology clinic which has given a diagnosis of idiopathic inflammatory spondylitic arthritis (or we don't know why but her body is destroying her bones for fun). So I take, paracetamol, tramadol, sulfasalazine, omeprazole (because a decade of over use, as told to by a doctor, of NASIDs has wrecked my stomach so if I touch ibuprofen I poo blood, nice). I've just had an injection into my upper back and am due to go in for injections into my SI joints hopefully soon. I also take a cocktail of berocca and spa tone with an omega 3 chaser 4/5 times a week because the sulfasalazine makes me anaemic and omega 3 seems to be good for lots of things so why not grin. Oooh and before I forget I also have two annular tears in my L5/S1 disc but this doesn't get much of a look in after everything else. And I'm deaf and need a hearing aid in each ear (although I got them to do me glitter moulds from the children's catalogue because otherwise everything is so beige), which is due to bones too. I am just such a fine specimen of the human form grin grin grin.

maybe we have our own syndrome lost!? so nice not to feel so alone. I have to say as a group we kick the ass of the back pain whinger stereotype. The amount of crap we all put up with and keep trundling on.

tickle you are more than welcome here.I hope we don't scare you and I hope you get a solution to your pain soon. I think it is important to treat early and thoroughly and you are right to look for answers.

sublimecorpse Sun 09-Feb-14 13:56:48

Hello all, I'm suffering with my back today. When I lie flat I can't lift my legs, I struggle getting into the car, again lifting my leg into the car is agony. Any little movement to the left, right, front or back when I'm standing is painful too. It's stiff and painful when I get up from sitting or lying down. I look like an old woman, can hardly straighten up.

I'm taking tramadol and paracetamol which isn't helping that much.

Any idea what could be causing this? I'm going to go to the Gp tomorrow and would like to say what it could be rather than just be fibbed off with it being caused by my weight sad

PavlovtheCat Sun 09-Feb-14 14:53:27

tickle you are absolutely not a fraud. As matilda has said, we don't do pain competitions. This thread is for ALL back pain sufferers, whether (hopefully) temporary back trouble, or if it is or becomes (unfortunately) chronic problems. The problem with x-ray is it doesn't show full range of disc problem that might be caused by injury. Also, when you hurt your back, it can take months to recover. Hopefully, this will ease in time and no long term damage, while recovering, get settled in and join us! How long have you had off work? Do you sit down for most of your work? Do you get sick pay? I ask because, sometimes, if you are in excessive pain, it is not always best to be back at work at all, if you can financially manage that or it does not jeopardise your work. You can get back too early and this can slow down your recovery. Of course, sometimes there is no choice, and sometimes the mental positivity of returning to work is worth the pain, but don't think because you have already been off for x amount of time, that there is a time limit, there really isn't. It takes as long as it takes.

sublime. You poor thing it sounds horrendous. If you cannot stand straight, your muscles are very likely in spasm/locked. You need to add an anti-inflammatory medication of some kind. You absolutely need to take something like ibuprofen or something from your GP if you have no medical reasons not to take AIs. if you take these as a tri with tramadol and paracetamol it will firstly improve the way the other two work, and also it will reduce inflammation of your muscles. If you have not tried it, talk to your GP about some diazepam, just need 2mg or so for 2-3 days max and it will stop those muscles spasming. Leg pain, that can easily be your nerve, but if your muscles are in spasm it could be that the nerve is irritated too, or it could be trapped. You need to make a huge huge fuss with your doctor about the leg pain.

Oh, and hav we yet mentioned on this thread that heat works? grin hot water bottles are essential in our medicine cabinets.

PavlovtheCat Sun 09-Feb-14 14:56:14

sublime you need to start the convo with your GP by stating that you know for certain this pain is not because of your weight, that there is something else going on. If you don't get the outcome you want, which, ideally is a referral to pain clinic/physio/MRI, then see another GP. If not possible, I would even consider going to A&E, especially with the leg pain. on a scale of 1-10, how much does your leg hurt? Do you have altered sensation anywhere in your leg or 'saddle' area? numbness in your leg?

sublimecorpse Sun 09-Feb-14 15:02:52

Thanks Pavlov. I don't have pain in my leg. When I move my legs the pain is in my lower back. It's a specific spot over my spine too, not over to either side.

I can't take anti inflammatories at all due to stomach problems.

Mum has slathered me in tiger balm and I have a hot water bottle on my back at the moment.

PavlovtheCat Sun 09-Feb-14 15:06:58

Oh sorry, I misread blush. You still need to address the pain with your GP, as something is clearly going on, it's ridiculous to blame your weight, when moving your legs is causing the pain. You still need an MRI, as nerve pain is not the only pain that needs to be checked out. It's gone on too long to be fobbed off now.

Do you have heat pads? or hot water bottles? We have probably told you already so ignore me if so, I haven't got the other thread open to re-read what was posted and have a sieve for a brain.

matilda so glad you are getting a bit of relief from pain. I hope it lasts when you return. We shall see though, I bet it's the heat!

PavlovtheCat Sun 09-Feb-14 15:07:34

I am not reading anything properly today! You said you had a hot water bottle! Does tiger balm work? <googles>

antimatter Sun 09-Feb-14 15:11:18

hello everyone, sunny here (for a change)
1 hour walk made pains reappear sad
I can't do nay other exercises
I have to find out if swimming is OK

livelablove Sun 09-Feb-14 15:20:38

Just adding my story to the new thread. I have had chronic mild back pain for years with a few flare Ups, a couple of months ago I had a really bad episode which also went down my leg. It was really bad at first and I was unable to walk. At one point it seized right up and I was unable to move myself about in the bed. The worst thing was not being able to get to the toilet!

I am much better now though and am only getting mild discomfort and stiffness and some numbness and tingling in my leg. I still find it difficult to squat down and sitting on a hard chair is uncomfortable. Also I find I am walking more slowly than ever, I think there is still a weakness in.my legs I need to work on. But have been able to stop all my strong drugs and just having the odd paracetamol or ibuprofen. I am having physio and working on my exercises.

Everyone has been very supportive and helpful with advice to help me get better. I decided to stay on the thread even though I am so much better now, as i want to know how everyone is getting on also I am trying to improve my back health and avoid future problems. I do feel it could get worse again if i don't keep working on it. There is the long term "weakness" plus i am not totally better from the recent problem.

livelablove Sun 09-Feb-14 16:19:30

Well about my chair hunt a bit disappointing as I found a chair almost exactly like the Poang at The Range store but we felt it was not quite right despite the great price (�50) I think it was their version of the poang it looked exactly like the picture on Ikea site, it did feel comfy, but the top was leant back so far i worried i would be leaning forward to look at things and not be supported. Dh said it looked as if it would fall over backwards! It didnt feel like it would actually it was sort of bouncy. In the end we decided against it, but going to look at some more chairs at half term.

GoodnessKnows Sun 09-Feb-14 17:44:17

On holiday on Thailand 20 years ago they used Tiger Balm and coconut oil to massage. Was loooooovely.

GoodnessKnows Sun 09-Feb-14 17:44:41

In Thailand

livelablove Sun 09-Feb-14 18:03:23

I actually know someone from Thailand who does massage. I feel a bit embarrassed to get a massage from a friend though.

PavlovtheCat Sun 09-Feb-14 19:13:51

losty did your ds have a good birthday?

magso Sun 09-Feb-14 19:18:42

I feel a bit of a fraud too, or an inbetweeny. I have one of those 'we don't really know so well call it CFS/ME diagnosisis. The trouble with CFS is that the medical world mostly blames everything on CFS ( sore back, keeling over, tachycardia) and ignores everything as untreatable . The misbehaving back goes back to early adulthood but is harder to deal with due to enforced reduced activity of ill health. It has also got much worse in the last 5 years. The CFS started (5 years ago) with a severe type of pneumonia - caused by auto immune lung destruction. I was very active and fit prior to that! The lung trouble (and most of the other little joys that go with respiratory failure) seems to be under control thanks to lots of corticosteroids, but coming off them seems to have let other things flair up (joints, ribs, back). I have had a couple of injuries (neck and sacrum) and often lock up my upper back (facet lock ups) and get sciatica on and off. More on than off at present. I am not supposed to use NSAIs (asthmatic- somewhat brittle), so use paracetamol or co-codamol and low dose amitriptyline. I have a page of other things (including lansoprazol) but those are not back related. Any way I am trying to get as well as possible and functioning more appropriately. (I forget how to spell and have a very poor memory - but everyone here seems to understand). So now I am working on the back! My Gp is supposed to be referring me for physio but did not think an MRI would be needed. An xray some years ago showed the lowest vertebra (L5?) to be knocked well out of alignment. I have been going weekly to a new chiropractor for 2-3 months (I was going less often before) who is trying to get my back ( which is very stiff and has several kinks it shouldn't) more mobile and decompress the squashed nerves. The theory is that if there is pain likely there is also functional loss from compression of sensory and motor nerves. In the last few months I have got somewhat better - more able but my back is just as painful.
Sorry about the long essay!!

I had a shoulder and neck massage yesterday - my first with massage angels. It was lovely. Done sitting up but learning forwards which is comfy for my sore tail end! Dh took ds to see the new lego film at a not very local shopping centre (I find it hard to sit that long), and I got to look around a shopping centre. I rarely have enough energy for shopping, so I had a lovely time. Lots of drinks to allow rests. Had to be prized out of bed this morning!! Back on the warm wheat bags today. Dh (who travels a lot) has some tiger balm - so listening for back hints with interest!
Hope every one has a good night.

magso Sun 09-Feb-14 19:19:30

Happy birthday to losts son. Ds is 14 too.

LostInWales Sun 09-Feb-14 19:29:00

YY to no pain competitions, your pain is your pain and therefore, umm, a pain. Plus if you are a starter on back pain or have had it for a while then whichever way being able to talk to people who know the frustrations and have tried everything (including shoes and chairs wink) can only help.

Great day Pavlov thank you, the cake was a success and he is a lovely giant child. Funniest was one set of Grandparents phoning up and speaking to him as though he was his father because they didn't expect his voice to be so deep. 'so is the birthday boy still in bed then' 'No Grandpa I'm talking to you' <sniggers>. How did I end up with a child that is way taller than me, I'm only about 24 39.

Swimming is great exercise for bad backs antimatter but you have to have a good position in the water, if you swim with your head up then it's going to cause you more problems. There are a lovely couple here that do Alexander Technique for swimmers and they are brilliant.

LostInWales Sun 09-Feb-14 19:36:57

<waves at magso> crossposts there, it's just odd having such grown up children isn't it? My smallest is 7 now, can't believe all that baby/toddler bit is behind me.

<cwtches up with denial on our very own special syndrome bench> wink

magso Sun 09-Feb-14 20:04:20

Waves back. Ds is just my size but growing fast at present. The voice will be next!

GoodnessKnows Sun 09-Feb-14 23:08:08

I'm on sooooo much pain killing medication with laxatives to combat that I wonder how it'd feel not to be taking them. I dread to think but do worry about addiction.
I'm seriously taking TEN pills just at 10pm
It's f..... crazy!
I've listed my meds before. Anyone else ever been on such a concoction? Apologies if you've already commented n I've not seen your comment.

Matildathecat Sun 09-Feb-14 23:58:25

antimatter, yes to swimming in the correct position. No if it's the breast stroke with dry hair kind of swimming because that forces your back into extension and will cause pinching nerves. I'm a very keen swimmer, used to go 4-5 times a week before this saga. I now go 2-3 times and have a hydro program devised by a physio who is also a swimming teacher and Pilates instructor so perfect for me.

I do walking backwards and fowards then sideways each way. Squats, leg raises and marching on the spot. I swim crawl, mostly with a float squeezed between my legs so I don't kick much as that sets my nerve off.

Floating is nice, too. Just being in the water even though it feels an effort in the cold weather. I reward myself with a wallow in the jacuzzi!

goodness, it is a scarey list. Since they clearly surely to god didn't mean for you to stay on all that until they see you in six weeks I think you need advice on reduction. Your pharmacist might well be good for that if not your GP. Or follow the very basic advice I posted before as given to me on discharge.

* pavlov*, I fear you could be right! I just don't want you to be. On the advice from my chiropractic pal here in Singapore I'm going for a standing X-ray today, something that has never been done. Not sure what it will show but he was appalled it had never been done. He did rightly point out that it's so stupid that all our MRIs etc are done lying, our best position. I'm sure if mine had been sitting my prolapse would have been much bigger on the imaging.

Waves to everyone else. We have a busy day planned here as into my last few days and have things not yet done. However we are getting nails done first. This is actually always a trail for me due to sitting so let's see. goodness yours must need doing soon???are you up to it? That and hair appointments are such a drag now. Am I the only one who stand up during hair dos? Can't lean back over the basis in either. Ummm.

magso Mon 10-Feb-14 00:01:48

When I first came out of hospital with the pneumonia I had masses too, and quite a bit to combat the effects of the therapy! Hence needing a tick list. It's quite a shock when you have not had prescribed medicines much in the past. I found it helpful to use the little medicine cups to count out the correct doses, so i didn't loose count. Felt like I needed a suitcase just for the meds, and a bigger bedroom! I hope your gp or practice nurse can guide you on how and when to reduce your pain meds. Pharmacists can be quite good too.

antimatter Mon 10-Feb-14 00:10:16

Matilda - I like the sound of your exercises:
walking backwards and fowards then sideways each way. Squats, leg raises and marching on the spot. I swim crawl, mostly with a float squeezed between my legs so I don't kick much as that sets my nerve off.

livelablove Mon 10-Feb-14 01:20:20

Matilda that is interesting about the standing X-ray. Funny how you met that guy, who turned out to be a back specialist! Now don't get too busy and enjoy your last few days.

PavlovtheCat Mon 10-Feb-14 08:14:06

matilda I love those swimming exercises, I was remembering the other day in the pool as my nerve pain increased a little about you using the float between the legs, I am going to buy one.

I had a standing up x-ray when I saw the consultant just before surgery, he wanted to see the movement of my vertebrae and I had several taken with me bending in different positions. I expect it would show other stuff too, and agree that laying flat takes the pressure off everything so is likely to show it as less impingeing that it really is. I still have no idea what that x-ray showed, he never told me. He doesn't really do talking it seems. grin

Hope everyone has a good day. I am off to work now. On time for a change grin

GoodnessKnows Mon 10-Feb-14 08:18:22

Thank you for responding to that, Matilda. Where is your advice that you were given on reducing meds?
I've a horrible sensation in my bum muscles. These were cut away (hope you're not eating breakfast) to get down to tumour and when I sit I can feel them being prized away from rest of bum/ body. It is horrible.

Fortunately, I'd been told that sitting and standing for long periods would be difficult, so I had mine done (gel powder - otherwise known as 'fake') before I went into hospital so I reckon I've got at least a week or two left. They look natural, by the way, as I get French manicure on transparent.

magso Mon 10-Feb-14 08:19:48

The xray I had years ago was standing - done by a chiropractor. He had the xray equipment in his practice (in the UK). Not thought about it before, but MRI are always laying down. I wonder if they can be up ended?
Sorry your holiday is coming to an end Matilda. I cross posted with you before! I find swimming very hard on my back but like the Jacuzzi. I will avoid breast stroke in future. In truth I have hardly gone near a pool in the last few years except to take ds.

Matildathecat Mon 10-Feb-14 09:14:03

anti you're welcome. You have to hold your core very strong throughout all the exercises and when walking really push from the leading leg IYSWIM. It's very good exercise for us back girls.

goodness how are you getting on at home? Do you feel any progress yet? Do hope so. It's bound to be slow so don't even think about work yet. At least you can phase your own return!

scone, if you're about, do hope you are ok and beginning to feel better.

live, I think you are right about treating your back as a long term issue. It's great you feel so much better but it hasn't gone away. If you don't take good care of the lion it will be back to bite you!

I've had a busy day here as I'm trying to do all the touristy things before I leave on Thursday. Resting now with a nice cup of tea.

Have a steady day everyone.smile

antimatter Mon 10-Feb-14 09:21:53

Hope everyone is OK today.

I have 2 days off (today and tomorrow. Tomorrow is because my friend got us free tickets for Britain's got Talent at hammersmith Apollo and we need to queue to make sure we get in.

Today is just because I had rolled over 5 days from last year and don't want to wait till end of the year to take my holiday as it happened in the last 2 years grin.

I've decided to go for a second opinion on my neck vertebrae/shoulder pain.
My work mate uses one near work and has been very happy with his treatment so far.
I am going to cancel the Wed one with the current guy and see the other one ASAP.

Matildathecat Mon 10-Feb-14 09:25:50

goodness, basically I was told to start off by reducing the opiates ( all beginning with Oxy!), I would think you would do that by weaning onto cocodamol 30 then cocodamol 8mgs. Theses have paracetamol in so no extras. Then gradually reduce the nerve meds ie gabapentin and finally the anti inflammatories. Because your meds are so numerous and complex I think the pharmacist might be a good person to consult also.

I've had my nails done today, they look very pretty. I usually have permanent pink and white acrylic but had Gelac (?) put on so look rather glam!! Sitting in the nail bar is a killer but here it was a comfy armchair with hands and toes done together. OMG going home is going to be a major downer....

GoodnessKnows Mon 10-Feb-14 09:33:43

A downer because it's been so nice to be out?

GoodnessKnows Mon 10-Feb-14 09:54:32

I've woken up exhausted and have been (am) in tears for the last hour n a half. My DH's family came over yesterday after my first trip out. Came for tea!!!!! WTF
I was laying in bed feeling like a lead weight and perplexed (for want of better word) why the fuck DH had thought that this was a good idea
Fucking hell
I was so upset that his ain't cane up to see how I was but no one else. No one
DH said he'd told the others I wasn't feeling well
Told me not to tell if been out for more than one hour as Was worried they'd say/ think I should've gone to family lunch 20 mins drive away in that case. Wtf
Family lunch!? Sitting up n being awake talking?
Tea at my house?!
Am I being pathetic and over emotional? I'm crying
For FUCK sake! I'm so upset
Clearly NOT in a state for it
Everyone is having a go at me for having gone out for two hours yesterday and you know why I'm sad?
I had a really lovely time. That's why
And now I have to hide it and apologise. Why
No
I'm sorry I'm ranting. It's a but of a crying-while-typing post.
So upset. (Tears roll down)
I can't drive or go out myself
I rely on other people to take me out for a glimpse of normality.
Bloody hell
Mum having a go at me. For fuck sake, fuck off.
Lots of fucks
Not in real life
Not now
Not really
Lol

(Calming down)

Wow. Some cross-post.
Sorry everybody. But, I'm sure you can relate to having moments like this. Even if you don't share them.
And I'm also sorry for being such a wingy bitch seeing as so many of you have to deal with this shit in worse scenarios and longer term. My heart goes out to you.
It is hard.
That is all.
(For now)
Xx

Matildathecat Mon 10-Feb-14 10:13:48

Have a good old cry. You deserve it and no, nobody gets how fucking awful you feel. Fragile, emotional and In pain. Quite why nobody gets that is rather sad but we sure do. So, duvet day for you, mrs. Shower when you can face it. Nice smellies, clean pjs and back to bed. Radio for company and a snooze if you can.

Sorry, but don't waste energy on arguing with anyone if they're too fucking selfish and stupid dumb to get it I'm afraid you won't got a change of mind. And your own mum! Oh my...switch off your phone and be zen. They ain't worth it.

Sending very zen and positive vibes from around the world. Wish we on here could tell your family what's what. Think they'd have to listen.wink

((((((((((((((((((((((((((((((((smile))))))))))))))))))))))))))))))))

magso Mon 10-Feb-14 11:20:56

Matilda enjoy your next few days. Hope you have a bed for the flight back. Make a list of nice things to do when you get back . Perhaps buy some treats to bring back to keep the mood ( silk pjs and tiger balm? ) Its warm for winter still!
Goodness ((Hugs)). It takes a while for nearest and dearest to understand the needs of someone just out of hospital, so it isn't just your DH. By my second stay in hospital ( relatively minor surgery that time) my Dh was more up to speed and organised leave and cancelled overseas work trips. Agree with Matilda - who is always so spot on.

LostInWales Mon 10-Feb-14 12:40:58

Goodness, you know what, they don't know, they don't get it and humans find it very hard to comprehend stuff outside their own sphere of experience. They probably feel guilty in some ways and because no one likes to feel bad about themselves they are a bit cross at you for making them feel like that. They would like you to be fine and normal and not taking attention from what they need, people are just weird and I'm not that keen on most of them. You have us though, we KNOW, we really do, the frustration, the desire to just be able to go out and do something nice and it to be normal and not take all the reserves of energy or your days supply of low pain minutes. In a way the 'spooners' thread has that one thing exactly right, we don't have an unlimited supply of what most people take for granted and that is SO frustrating. Fucking, fucking, fucking frustrating! I'm choosing one section of your post 'I had a really lovely time'. That. You had a really lovely time and if the rest of them don't understand then it is their problem, you cling on to the lovely time memory and ignore the rest of them, they don't matter if you don't let them. </endRant>

LostInWales Mon 10-Feb-14 13:04:22

With the standing up x-ray thing (apart from being astonished that a chiropractor has his own set up shock, who read them, what training did he have, radiation all over the shop!). There used to be a lot more standing up x-rays, in fact we used to regularly x-ray pregnant women standing with a metal ruler clasped between their thighs when they were near term to see size of the baby's head compared with the size of their pelvis! There are also standing flexion/extension x-rays of the lumbar spine (I bet you good money the Dr sending Pavlov for those was old school wink). The problem is there is relatively a lot of radiation using this method and they are not as good generally as the ones where you can be positioned perfectly lying in a stable state on the table, with positioning aids under your side or between your knees. There is a lot that can be read from these, including the state of your muscles and other stuff. With reading x-rays the most important thing is that every one is taken in a standard position or it is harder for the radiologist to read. MRI standing up or sitting would be brilliant but I think the science needs to catch up a bit first. They are a fearsome impressive bit of kit those machines <remembers the quantum physics involved in the 3rd year of her degree and weeps a bit>.

magso Mon 10-Feb-14 14:23:38

Sounds like you worked in that field* Lost*. I wonder if that chiropractor still does X rays then? Things change quite quickly in some fields. He was trained in the USA or Canada (embarrassed I cannot remember) I think so kind of a super (pricey) chiropractor. I've just worked out it was 12+ years ago as ds was in a pushchair when I visited that one. The practice was up very steep stairs in an historic building without a lift, and carrying ds and the pushchair was difficult. I stopped going because I got worse (full on sciatic pain) so changed my allegiance! In all fairness it might have been the stairs (with a very wiggly autistic ds to control) that caused the worsening -not the treatment.

Goodness Lost is right. The idea of 'spoons'(limited strength or good minutes) might help the people around you understand better. It is important to reserve some of your good minutes for what you enjoy - to help you get well and strong again. When well we balance our time between what must be done (daily personal care/chores/work/looking after family) and rest and enjoyment. The rest and enjoyment bit is the important stuff. Hope you are having a better afternoon.

LostInWales Mon 10-Feb-14 14:57:33

I am a secret NHS interloper on the thread wink. Which doesn't mean btw that you can't slag of crappy health care workers in front of me, they drive me crazy because I know the pleasure of going above and beyond for a patient to make their visit better and the lazy, doing the bare minimum or downright rude examples make my blood boil. My first x-rays were done by a very senior colleague and when they came out of the processor she said to me 'oh I am so very sorry' grin.

GoodnessKnows Mon 10-Feb-14 15:04:12

Lost, what a moment that must've been. ;(

LostInWales Mon 10-Feb-14 15:10:50

Sounds silly but I was actually relieved that there was something physical there, seeing it didn't make any difference to the pain but it did mean I wasn't going mad!

GoodnessKnows Mon 10-Feb-14 15:31:36

Thank you, ladies. Although exhausted (effect of being emotional) do feel comforted by your understanding words.
Poo
Tired
Only had one visitor but zonked and mum coming later to sort filing at my own request. Stupid, silly old me. Oh well, I'll feel better once it's done. I'm still not dressed. Meds taken. Bit of food eaten. Lots of fluids. Just want to watch Breaking Bad n relax / sleep but have to chase up discharge letter (says to b seen at two weeks post-op: tomorrow - no appt.), DS banned from jujitsu, chess club n awaiting results of his autism assessment.

livelablove Mon 10-Feb-14 15:32:37

Its great we have our own tame radiologist lost actually we have a few experts here I believe, Matilda is an ex midwife and Pavlov knows all about those horrible forms for DLA or whatever it is now called. So we can get some good advice here.

goodness that last post could have been an aibu to think my dhs family are a bunch of selfish feckers. Honestly how can they not come and see how you are doing and bring you large selections of chocolates? How can they not see the difference between a little rehabilitation outing and a family lunch? Perhaps your dh is to blame for telling them you were feeling bad, surely he realises you want some visitors to cheer you up. And seeing you lying there would have shown them you are too sick for a family lunch too. Well bad marks to all of them, esp your dh. As Losty says though that is why we need MN support thread. At least people on here understand what the pain does to you. Still I have never had major surgery but I hope I can be a little more empathetic towards anyone who has! Btw its great you managed to go out though, that is a good step forward. I would tell dh it takes at least 6 months to recover from a big op like yours and you will not be going to any family lunches until then or never.

Matildathecat Mon 10-Feb-14 16:15:59

Well I had my standing X-rays done of lumber and cervical spine including a weird one with my mouth wide open (checking my fillings?!). They have already been reported and DH old pal/ chiro has emailed to say they are 'interesting'. Going to see him in the morning. That's not in the guidebookwink.

lost, as a very long time nhs gal I'm super aware of other hcp's attitudes and behaviours. I can say hand on heart I have never, ever treated anyone in any way I wouldn't have wanted for myself or family. ( except when being threatened by very nasty DV partner of a very young client).

goodness, I was very low after my second op so I got a nice notebook and made a list of things I'd like to do. Mostly very simple. I then roped a couple of very close friends into doing them or putting some dates in the diary. Even if it's a few months off it gives you something to look foward to. A nice little outing once a week or so. I found it fortifying. Hope you get some support with ds soon. It sounds very stressful.

GoodnessKnows Mon 10-Feb-14 16:17:46

Anyone else have a teary day a few days after getting home? Non stop upsets with DH don't help. Pleeeeeease don't PM me about this as hint account n he will go nuts

Matildathecat Mon 10-Feb-14 16:25:51

Yes. It's completely normal.

Let it out. Be gentle with yourself and remember it's very, very early days.

Recovery is not linear.x

LostInWales Mon 10-Feb-14 17:21:30

Open mouth = peg view, need to get your teeth out of the way so the 1st and 2nd vertebra can be properly visualised, sometimes if a patient is strapped on a spinal board and can't open their mouth much we get them to open and close their mouth quickly with a long exposure so the teeth/jaw bone blur but the non moving neck bones come out really sharply. I always say being a radiographer is 90% being able to persuade complete strangers to take their clothes off and pose in odd ways for you within 90s of first meeting wink. YY to treating every patient how you would expect your family to be treated and not accidentally banging the equipment off the heads of the rude ones.

Goodness that sounds 100% normal even without DH annoying the hell out of you.

GoodnessKnows Mon 10-Feb-14 17:49:25

Matilda, that's such a strikingly true statement and one I should've been told (loudly) on admission (the non-linear thing).
Thank you for that.

Lost, you made me laugh ('even without...'). I think it's a combo.
Thank you so much for that.

Needed to break the cry-rant-cry cycle of the day.
Yesterday's trip out seems so very long ago. Such faded memories, when I know what a wonderful tile I had (even though so basic). And it's not as if I've DONE much in between! Lol

magso Mon 10-Feb-14 18:10:06

Goodness it is perfectly normal to feel teary after what you have been through!! not only have you had very major surgery, (which is enough on its own to make you feel teary at times) lots of meds (including a GA and lots of opiates which may affect your perspective) you have had the huge strain of waiting for potentially life changing test results. same happened to me once I got results that gave hope of recovery.
Lost and Matilda I am also a secret NHS employee although not in anything useful to us. My colleagues all pull out the stops (and as you say its enjoyable to do a good job)so its odd to come across staff who are temperamentally so different. Being ill and extremely vulnerable and dependent on equipment in hospital was quite an eye opener. I also remember the kindness - from the junior staff and porters.

livelablove Mon 10-Feb-14 18:12:49

What did you do yesterday goodness? I dont know if i missed your post.

GoodnessKnows Mon 10-Feb-14 18:18:23

Gosh, yes. The kindness of a barely-there smile that told me that I was amongst humans (when a nurse refused to help me - my catheter had come open and I was drenched, along with the bed).
She was my lifeline in her own quiet way.
Oh, and I made a formal complaint to PALS about a Bitch Face (nurse).

The humour of the theatre staff - especially the anaesthetist who played on it by telling me he was John the Baptist wearing lots of make up (he was black). The smile of the night nurse who looked after me the night after Bitch Face. The Senior Nurse who talked me through things and agreed to take my back drain out when I said only she could do so.
These are the people I remember.

PavlovtheCat Mon 10-Feb-14 20:14:19

losty he is very young school actually, my consultant. well, age wise, perhaps taught by old school? He did do the scan to specifically check the movement of the vertebrae though, said that lying down would not show if it moved and how much by. I swear he is younger than me which is a) great for confidence and steady hands and b) not so great for experience and knowing he has seen me naked grin

Sorry I haven't posted too much in response to others. <hankies> to those who need it <hugs> to others, good wishes to Matilda. I am off for a good night's sleep as I am going to see FRANK TURNER!!!!! tomorrow in concert. I have taken the next day off to recover. I don't feel too well, sort of bug like and increased back pain (always makes me nervous as viral and back pain has = relapse in the past) so, drugs, early to bed. I don't care if I have to crawl there. I am going and I am having a bloody good time. So So excited.

GoodnessKnows Mon 10-Feb-14 21:23:58

Pavlov, don't hate me but I have nooooo idea who Frank Turner is (about to google).
However, want to say: have a fucking amaaaaazing day!
It's been the day for fucking here (well, for swearing lots when little ones aren't at home, anyway).

livelablove Mon 10-Feb-14 21:31:19

goodness I never swear but I would swear at your mean relatives!

PavlovtheCat Mon 10-Feb-14 21:39:07

Frank Turner is Fucking Awesome! Acoustic rock/folk I gues you would call it? He rocks! He is very pleasing on the eye, which helps a lot when drooling at watching someone play for two hours. His band is called The Sleeping Souls and they are also amazing. It's all just brilliant. He played at the olympics, which sort of meant he sold out a tinsy bit, his roots being in punk rock, but he has toned it town. But let's hope not too toned down! Shall I link one of his rockier songs?

I'm going to. He is going to play this tomorrow. I so wish I was strong enough to be at the front! Four Simple Words you have to listen to it all.

PavlovtheCat Mon 10-Feb-14 21:42:37

Not sure why he sporting a 'tache' in that one though, that's Not Cool. I will show you a better photo of him. So you can see what I am going to have to endure tomorrow grin
swoons

PavlovtheCat Mon 10-Feb-14 21:44:49

AND. AND. He has a back problem. He performed at Reading this year after having steroid injections into his spine, and he wore a back brace, didn't play his guitar. He had to cancel some gigs prior to it as he was screwed. So he is One Of Us!

PavlovtheCat Mon 10-Feb-14 21:46:33

goodness you have a lot of time to catch up with tunes. You want to listen to Love, Song and Ire - an early album of his, and then Tape Deck Heart, his most recent one, the tour of which I am checking out tomorrow.

can you tell I have a little crush on this man? Only a little from afar one seeing as I am a married family woman now. But, well, no harm in a bit of window shopping with some good music to listen to eh grin

livelablove Mon 10-Feb-14 22:41:34

Hey, I like him. He is cool and he is one of us! You are sure to have a great time. Not too much jumping up and down now, he will understand. Also try to avoid letting DH see you drooling grin

GoodnessKnows Mon 10-Feb-14 23:53:24

Hahaha
I'll click those links tomorrow (after 7.30 blood tests) but for now, I'll share my secret:
I'm a big Prince fan. Well, was.
HUGE
The 'sing along in my room' variety though. Lol

PavlovtheCat Tue 11-Feb-14 08:48:05

I'm sooooo excited! I have more pain today after a bad night, so I shall be not so much drinking £5 a bottle beer and more taking opiates grin

Hope everyone is ok. Take it steady and hope your pain levels are all manageable. I am late for work. I am always bloody late grin. It's a good job I work on flexi and just down the road!

GoodnessKnows Tue 11-Feb-14 10:00:06

Run Pavlov! Run! wink]

livelablove Tue 11-Feb-14 11:19:08

But don't jar your back grin

Matildathecat Tue 11-Feb-14 15:10:03

pavlov enjoy! Sounds like proper fun which is what we need.

I saw the chiropractor this morning. For those not up to speed(!) I'm on holiday in the Far East. This chap is a very old chum of my DH. Basically he has nothing to gain from advising me.

My X-rays ( standing) made total sense. My right leg is slightly longer than the left. This, by the time it reaches the pelvis/sacrum equates to a 1cm difference. This pushes the lumber spine out of alignment into an abnormal curvature and causes the disc at L4/5 to be squeezed to the left. Hence disc prolapse, dehydration and subsequent arthritis.

On top of the nerve damage and severe scarring caused by the surgery to reduce the disc.

The good news is that with treatment, some of this misalignment can be treated. Expensive and intensive. I need to find the right person and get my head round it all. Tbh I was in pain quite badly after one very gentle session. Apparently to be expected.

So I have lots to think about and the X-rays to prove it.

Also, apparently my bones are unusually thin for my age. Oh blimey. What next.

He advised Vit D, Turmeric ( for ever) and Omega 3,6 and (?) 9. Sorry am a bit shell shocked.

On my return I will be making changes. Also, my neck (seems fine) is a ticking time bomb, too. I will be making changes...

sublimecorpse Tue 11-Feb-14 15:12:58

Hello again everyone smile

I've come back for a little more advice. I feel like I'm constantly taking and not giving but I don't have enough experience or knowledge of back problems to offer advice to anyone else so apologies for this blush

I went to the Gp on Monday who checked me over and said that my pain is around the L5 S1 area. He doesn't know what the problem is, it could be anything. He gave me a 3 day course of Diazepam saying that in acute episodes of back pain the muscles can go into spasm. He also gave me paracetamol and ibuprofen gel as I can't take ibuprofen tablets. He said to go back in 2 weeks if pain is not 50% better.

I've taken 5 diazepam and it's not had any effect on the pain. It's just made me sleepy.

When I stand up I feel like I have a lot of pressure on bottom of my back. Walking hurts, sitting hurts.

What can I expect from the diazepam? Does it take a while to work or is the fact that is not worked yet mean that it won't work?

I couldn't go to work yesterday or today. My colleagues are annoyed and my boss hasn't answered her phone any of the times I've rung in. I feel bad for not going in but I do admin and am sitting most of the time. At the moment I know that's not going to be possible sad

Just feeling a little useless and a little down today

livelablove Tue 11-Feb-14 15:22:50

Wow Matilda a lot of new info there. Seems like fate you met this guy and even if you only get a small improvement and avoid future problems that is still a great help. Good luck with it all, and enjoy the rest of your holiday.

livelablove Tue 11-Feb-14 15:32:54

Hi sublime I didn't find diazapam that helpful, it all depends if the main cause of your pain is muscle spasm. I found the biggest improvement when I took naproxen, which I know you can't take. I didnt find ibuprofen gel helped at all. Not even voltereol gel either. Have you got any codeine based drugs? You could try some from OTC at first but you can get stronger ones on prescription. Don't wait too long the GP is more likely to believe you are in pain if you make a fuss.

magso Tue 11-Feb-14 15:34:11

Subline (Hugs). Its not your fault your back is making it impossible to work! Try not to let work worry you, although I know that is difficult.
I've not used diazepam but I think my DH was given it when his back locked up to help stop the spasm. I'm not sure though. I use ibuprophen gel too (can't take NSAIs either), also the patches ( not together!) .

Matilda sounds like your chiropractor comes from the same school of thought as mine! Its nice to have some hope. I do feel my back pain has got worse since starting the course of treatment but I am functioning somewhat better. And she did think it was going to be a long haul for me. In the past chiropractors have got me out of trouble - indeed I could not function without one. whats new is the idea of regular ''treatment' where the movements of joints is tiny, to achieve slow change. I still would like an exercise regime. I know NICE has rejected chiropractors for the NHS- I think it was due to inconclusive long term benefit from a (short course of) treatment. I wear orthotics to try to balance me up.

Matildathecat Tue 11-Feb-14 15:34:57

live, yes lots to think about. Only two days left until I bump down to earth in sunny England. sad

sublime, I'm not a doctor but IME diazepam works very quickly. If the muscle isn't in spasm then it isn't going to help much. You probably need stronger analgesia(painkillers) like cocodamol or tramadol and a sick note from work. The stress around calling your boss etc will make you worse.

With acute backs the mantra is rest, potter, rest. For me, resting is lying down with supportive cushions propping me up and more pillows under my knees to relieve lumber tension.

Hope you feel better soon. If not press your GP for more investigations.

livelablove Tue 11-Feb-14 15:41:57

Btw my mum who is a nurse suggested rubbing the ibu gel in regularly even if it doesn't reduce pain that much as it may slowly bring down the inflammation and it would have a cumulative effect, so you could try that.

Matildathecat Tue 11-Feb-14 15:42:24

Sorry x posts. magso, yes I need to find the right person. It's quite scary as I've had sooo much treatment over the past two years. I wS actually thinking of this year as a kind of 'get used to your new life' year.

I will do it. Not sure when.

Yes, orthotics discussed and very obvious, I guess. No pretty shoes just yet then? wink

GoodnessKnows Tue 11-Feb-14 16:29:07

I have orthotics. I've got ones that were made using plaster of Paris to make them just right to fit the needs of my posture / degree of roll in, or whatever. They're not the full length of the foot. I find it next to impossible and annoying to use them on flats / pump styles. Heels too would b a problem unless they're quite deep. Around the foot. I ummed n aaahed (?) about getting them n thought about my future 'shoe limits'. But I'm so glad I did go for them. I wear pumps orthotic-free but I even wear my Uggs with orthotics. They're fab.

GoodnessKnows Tue 11-Feb-14 16:40:20

Bon voyage, Matilda! ��
Wishing you an easy and uneventful journey home.
Definitely some sun rays through my window today. Things are looking up!

LostInWales Tue 11-Feb-14 20:26:45

Matilda I saw an excellent physio for my 'lopsidedness' if you are in S Wales I can give you her name. Or really you just need to find a good spinal physio, mine over the course of two weeks, popped me back level and set me on some amazing exercises to help.

<waves at everyone else> Just trying to work out whether to send the children to school tomorrow as apparently the apocalypse is coming to our coast. Joy.

sublimecorpse Tue 11-Feb-14 21:41:35

Thanks for the advice again, sorry I can't give much back but hugs and sympathy. I really admire those of you who live with back pain constantly, I don't know how you do it.

I will take the rest of the diazepam, I'm due some more shortly and will then have 3 for tomorrow.

I'm using a hot water most of the time as suggested and will use the ibuprofen gel regularly as also suggested.

I have some tramadol and some co codamol 10/500. Can I take either of those with the diazepam? The go said he'd rather i didn't use those as ibuprofen would be better but I can't take that - my stomach is in shreds when I use it.

I will also do as someone advised and move about for a bit and then rest, mice and rest. Seems logical that short bursts of activity is best.

Will also try the pillow between the knees.

I need to get back to work though, as I said it seems that everyone is pissed off with me not being there. I sent my colleague a message explaining why I'm off, quite long and detailed and got a reply back saying "ok" so I can tell they're not happy. My boss hasn't bother to pick up or respond to any of my numerous calls or voicemails sad

I have an office chair with a back support that constantly falls down and it's so uncomfortable. Will take in my hot water bottle and a cushion I think.

livelablove Tue 11-Feb-14 22:23:55

Sublime you can take the cocodamol or tramadol with diazapam I think the cocodamol is quite a low dose is it helping? If not it comes in higher dosages.

livelablove Tue 11-Feb-14 22:27:22

Have you tried taking ibuprofen or naproxen with a stomach protective med I think it is ometrazole sp?

livelablove Tue 11-Feb-14 22:29:36

Does heat help a lot? You can buy stick on heat patches good for work, they stay hot 12 hrs. Buy in most chemists, but good value ones in wilcos.

PavlovtheCat Tue 11-Feb-14 23:45:11

Fucking Awesome.

I danced. I jumped (not too much).

I now hurt.

I bet he hurts more! He fucking rocked! and he jumped! and he talked about his fucked up back (two discs) and I was Very Jealous that he absolutely rocked it. So. He is gonna hurt grin

Did I say it was Awesome?

Matildathecat Wed 12-Feb-14 03:40:35

pavlov glad you had fun. It's worth it, isn't it, to have a lovely time sometimes even if you know it's going to hurt later?

lost, that's a good point about the physio. I'm in SW London but do actually see my physio/ Pilates teacher most weeks so I will show her the X-rays and discuss. I actually think there's a huge overlap between a good physio/ chiropractor / osteopath. It's all about finding the right person.

sublime thanks for the sympathy or rather empathy I guess since you are suffering! too. Chronic pain is different to acute pain but it's hard to say why. One of the main reasons is this: with chronic pain you can cause yourself pain ie going to a concert, but you aren't actually injuring yourself. Just causing pain. With acute pain / injury the pain is a strong signal to stop activity to protect the injury. You sound acute at the moment. That's why resting, ignoring your mean colleagues ( who clearly aren't bothered about you so why worry about them?) and allowing the injury to settle, is vital. Yes, cocodamol comes in varying strengths, 30/500 being the strongest. It's very effective but does make you feel pretty stoned! As above, we all love heat! Your GP sounds a bit hopeless tbh can you see someone else? We all find crying works extremely well, too. I'm sorry I can't remember your story but if sitting is impossible you sound like me and my initial problem was a disc prolapse at L4/5. There are no quick fixes, unfortunately so please look after yourself. Lots of people fully recover but, like live know it's lurking in the background. She is really back aware now as you can tell!

It's my last full day here, home tomorrow night. sad . We just been walking and swimming on the beach nice and early with the dog then big greedy breakfast in a waterside cafe with lots of other ladies with dogs. What's really funny is that all the babies are cared for by maids while the mummys take the dogs to the cafe!! Very different culture.

LostInWales Wed 12-Feb-14 08:24:49

Matilda is wise, there is a big difference between days when you do stuff because you choose to and accept that it will hurt tomorrow but that is the pay off and fine (grin Pavlov, glad it was totally worth it) and the pain that is shouting, 'STOP, you are damaging yourself, don't do this now'. If you have that pain you are making it harder for work in the long run because you will have long term damage. If you can explain to your boss it is more economic long term to let you sort this properly now rather than push yourself and do damage that will need sick leave for months in the future would that work?!

Right, I am going on a baking course today, DH has gone to work having been told he is in charge of tea because I do not expect to have functioning upper back/shoulders tonight but I will bring cake to make up for it grin.

PavlovtheCat Wed 12-Feb-14 08:40:49

So sore! That's the chronic pain matilda talked about, if I was in an acute phase (which you can still get even with chronic pain) I would not have been able to do that without it causing some further injury. My god, yes it was worth it! But so glad I took today off as annual leave. I have maxed the codeine and paracetamol, heat pad on, laying on the sofa, but feeling very happy. And sad. You know those post Something Lovely Blues?

I shall go and read everything I missed due to being So Excited and post more later.

PavlovtheCat Wed 12-Feb-14 08:49:08

matilda wow! so your trip has actually been much more than a relax and recoup your strength type of trip! FFS, this is what annoys me with medical routes, they just seem so random. A colleague has had x-rays but no MRI, and now told she needs MRI, which she needed all along. You have had this problem for, well probably your entire life right? And so when your disc prolapsed it could have been addressed then. Although, actually, maybe fate stopped that surgeon having anything to do with it. What a lot of new stuff! Is the [potential] neck problem to do with the thin bones? It's amazing how much new stuff comes about when proper thorough checks are done. I hope it doesn't cause you too much angst, as now you can at least do some work on improving how you feel, even if it is only a little. Enjoy your last full day there. Hope the slight ease of pain lasts for a while when back into Blustery Wet England.

PavlovtheCat Wed 12-Feb-14 09:17:41

sublime <gentle> hugs. Lots of things to say.
1) please please don't rush back to work. They will have to get on with it. I remember the terrible guilt of leaving my colleagues in the lurch. I remember my old boss giving me a 'gentle' bt of advice that I need to get back onside with my colleagues who were a little resentful as having to shoulder the burden, she suggested getting some cake for them. What, to apologise for being ill?! shock It took me a very long time to get over the immense guilt that I was wracked with each time I was off knowing it was going to be weeks, not days. I still feel guilty now and worry what they think, but, firstly there is another colleague with similar problem now so empathy has increased a little and secondly, I just cannot worry about them. You MUST get yourself over this acute phase before you can go back to work. If you are having trouble sitting, standing, walking at all, then you just cannot do it. I understand completely how their poor attitude can affect you, but, with their attitude, they won't actually thank you for returning, they will NOT understand that being back is hurting, that you are in pain, they will just be glad you are back, not what you are sacrificing for them. And, when you do go back, you must get a work station assessment and get your chair changed. If your employer is a small business, they can get help through organisations such as (down here it's called) PLUSS+ which helps people stay in work by funding equipment.
2. Diazepam deals with muscle spasms, so if it's not doing anything, then perhaps the muscles themselves are not causing huge problems. Interesting that the doctor has located a specific area, and identified it with vertebral numbers, but said it could be anything - clearly thinks it could related to that somehow or else he would not have given it such clear location. Diazepam tends to work quite quickly, certainly it has for me when I have had severe muscle spasms that stop working - firstly it chills me out and stops me worrying, so all of me relaxes (not a bad thing as when in pain, we tense everything up) and then it relaxes the muscles, takes about 1-2 days to work for me, usually some relief within a few hours. But, if your muscles are severely spasming and have for a while, maybe it will take a little longer.
3. live is right that 10mg of codiene is a very low dose. If that is not working, talk to your GP about increasing this, especially if you are not working.
4. I get some pressure on my low back, sometimes, as the pain sort of ebbs and flows I feel pressure in my bowels. Sometimes it reminds me of a contraction, that deep rolling pressing down pain (giving birth was easy compared to my acute back pain). Is that what you mean? I am not sure exactly what causes it for me, I guess it's just how the pain eminates. Docs are not concerned (but they tend not to be concerned about much ime), however, if you find that the low back pain causes actual problems with your bowels or sensation changes, report this immediately to your GP. Also, keep an eye on your bowel movements as sometimes taking lots of different painkillers, especially opiate based ones, can make you sluggish, which is typical as the pain of constipation can make back pain so much worse. If you feel things slowing down, drink more water, prune juice, ask your GP for movical to help things tick along.
5. Don't feel bad about not 'contributing'. This thread is to support everyone, and soon enough you will be giving advice to new posters, I bet you! We all have days (I have lots!) where we are in such a bad place, all we can do is ask for advice and a hand to hold and not be able to do much back. and <hugs> are actually plenty enough, especially given their scarceness elsewhere on MN!
6. matilda is right (she always is you know grin) about acute vs chronic pain, especially as you don't know what's going on. Acute pain means you must rest more than move. You do need to keep mobile, but that can be as simple as going to the loo and back again, or walking to the door and back. If you try to go back to work too soon, you will be off work again.

Phew! I said I had a lot to say!

PavlovtheCat Wed 12-Feb-14 10:33:18

ok everyone that needs new shoes, for medical purposes of course!

Amazon have 70% of shoes (not all) and handbags and, with code BONUSTEN you get another 10% off.
I have these already, but petrol green is not great with my largely black work wardrobe so, given the significant price drop, it would be slack of me not to buy them right?

livelablove Wed 12-Feb-14 11:29:58

Pavlov so glad you had a great time, and nice to think Frank Turner may also be lying down with a heatpad this morning.

Actually it is great to know people with long term back problems can still have successful careers and a great night out (and nice boots)! Or even if chronic pain prevents a career you can still have a good life like Matilda. As i mentioned above Mum is a Mental nurse and she tells me she quite often has to counsel people who have chronic pain and feel their lives are ruined. So this is good to know, even though i hope we all get better very soon.

PavlovtheCat Wed 12-Feb-14 11:50:28

live oh yes, I agree. I try to look at people with successful recoveries and think that yes, it's possible, even if not to the same standard of success as those people, with hard work it is possible sometimes to get a bit better, and for some, completely better - did you know Ben Ainsley had a discectomy in Dec 2011, prior to winning THREE gold medals at the 2012 Olympics just 7 months after, he was training again in March 2012 - i'm sure I have. And also Andy Murray has reported back problems requiring a discectomy recently, although, I am annoyed that he completely minimised it 'minor back surgery for a small problem' is pretty much what he said. I agree that lots of people ca bounce back, and his type of profession doesn't warrant taking huge amounts of time out, or suggesting to his sponsors that he is not going to make a speedy recovery by talking about the seriousness of the problem, BUT, it re-enforces the stereotype that back problems are not really that complicated or serious, and that surgery on your spine is often minor. It's never, ever minor, even if it is successful and uncomplicated.

Frank Turner referred to them as Fucked Discs and he has written a song about it! It's actually one of my faves and I didn't know til yesterday it was about when he first 'fucked up his back badly' as he put it.

I shall link it. It could become our like Mascot Song or something grin Losing Days

PavlovtheCat Wed 12-Feb-14 11:52:44

I doubt he is lying down with a heatpad. He is probably already on his way to London for his next gig tonight. Although I expect his tour bus won't be a National Express type vehicle, he is bound to have lots of lovely beds and things to stretch out on, and a physio on hand and all sorts envy well, actually not envy his tour is hardcore!

Matildathecat Wed 12-Feb-14 12:08:43

Speaking of famous people with their back problems, I'm still absolutely seething that last summer David Cameron was flown (at our expense) to an nhs hospital in Oxford from the Scottish Highlands for am MRI and spinal injections because ^ his back was too bad for him to go stag hunting^!!!!

It still amazes me that there wasn't more of a fuss when you consider the shit we have to go through to get any kind of treatment at all.

Glad it was all worth it pavlov. I'm sitting here in the evening warmth for my last night here. I fly home tomorrow night so fingers crossed for a god journey. I can't tell a lie, I am travelling in comfort so will be trying to use as many facilities and eat/ drink as much as I can stuff in my face. Then back to earth with a very hard bump. It's been a tonic. I've had such a shit two years in many respects. I needed this although I didn't realise it. I just hope I can sustain it for a while at home. Some hope...

PavlovtheCat Wed 12-Feb-14 12:18:21

shock i bloody missed that! wow! was a local hospital not good enough for him? We have to manage on the provisions for where we are when we have emergency cover and fight like tooth and nail for anything more than weak opiates and he gets an MRI and injections at a click of fingers? Where was his minimum 6 weeks before back problems are deemed to be worthy of further investigation such as MRI, before being referred into the normal NHS system of a further 4-5 weeks for the MRI appt to come through? I mean, fair enough if he doesn't want to use the NHS, that's his right and to be expected being a Tory who wants to rip it apart, but in that case, he should use his own private medical insurance (and if not covered pay his own way) to bypass the normal medical routes.

livelablove Wed 12-Feb-14 15:32:54

Well I did not hear about that either matilda but it doesn't surprise me. Only this week there have been several people on MN complaining the GP would not even give them adequate painkillers for really serious pain, one was a ruptured disc and they told her to get something from the chemist! I bet they didn't tell David Cameron it was all in his mind and take an ibuprofen.

Matildathecat Wed 12-Feb-14 16:15:26

Ok, I don't read this paper but this was the story.

Let's all hope poor David's back is better since he's shown us so much consideration. hmm

www.express.co.uk/news/uk/423375/David-Cameron-My-back-pain-is-stopping-me-from-deer-stalking

livelablove Wed 12-Feb-14 17:23:34

Yes get well soon David and does this mean we can all have an MRI if we can't go deer stalking and waterskiing? I am feeling a lot better, but still not well enough to waterski so I will have mine tomorrow, can you have me helicoptered back in.time for work please?

pavlov I like lost days I think it could be our theme tune.

I had my last session of physio today, my physio was pleased my back is so much better. She said do you remember that you said your pain was 9/10 at its worse when you first started coming. I didn't remember having said that but that just shows how it has improved. I am not 100% better yet, I still want my MRI Dave! I am still stiff esp my calf and I have those numb tingly places, and gets achey in the evenings and when in an uncomfortable chair but i hope if i keep working on it and exercising i can improve even more. i will be on tour in no time. My plan is to do the exercises they have given me, get better chair, find a back support for the car, start building up my walking and difficult one- lose weight. i might be brave an ask my Thai friend about massage. The physio says exercise is the most important thing, but i think all those little things like comfortable shoes will help.

PavlovtheCat Wed 12-Feb-14 17:41:30

live my fly boots I wore them yesterday to the gig, and they were soooo comfy. I didn't get sore feet like I have before when standing for so long, well I did, but that was nerve pain, rather than bad shoes pain, and the spring in them I am certain meant I could actually jump a bit without my back going completely. So, given they are in a sale...

magso Wed 12-Feb-14 18:38:19

Quite right to buy them Pavlov, it is after all medicinal. I do like Fly boots ( sadly Dh does not). Good you enjoyed your concert.
Matilda, hope you have a lovely evening sun soak and smooth flight back home. It must have done you a power of good just knowing that with a few modifications you can do lovely normal things despite your shiny blue badge. Life can go on with a few modifications. the first year after I became ill I got rather down ( not helped by the lack of medical support) but slowly slowly life has got back to near normal. My first longish walk in the mountains had me on a high for weeks! Ok so I had to 'cheat' with a lift to a pass, so I could walk down hill, (lungs will not allow uphill walks) but the mountains are just as nice which ever way you are walking. I do think doing fun things is so important - perhaps more so for us!
Live I am impressed with my inexpensive amazon seat pad. Its good in the car but might be problematic for taller persons as even my head (5ft1) is close to the roof with the extra height. On the other hand I can at last see over the bonnet!! I'll try and work out how to do a linky. I use a compact Putnum back rest for lower back support - have done for decades so there might be better now. Being short I find the full length ones not right.

PavlovtheCat Wed 12-Feb-14 19:09:21

magso oh, I wasn't clear...the ones I wore to the concert aren't those I linked to. Noooo. I now have <coughs. Ahem> three pairs blush

magso Wed 12-Feb-14 19:11:14

Forgot to mention that the Ikea neck rest ( the one with the sand filled counter balance) is quite good as an inexpensive slim lumber roll. I think it only comes in black but I use one on the computer chair.

PavlovtheCat Wed 12-Feb-14 19:22:21

mags you are so right about the fun things being important. I think we probably take them for granted less, maybe even enjoy them more as we have to pick and choose more carefully what we opt in and out of, and consider the consequences and prepare for those, it's much more than just flippantly going up a mountain without much planning or to a concert, being right at the front, or hopping on a plane with just two hours before flight is due.

I have some great news! Well, probably doesn't mean that much to most of you but, some I think know where I am at with my employment. I won't say too much, but, this morning I got a letter to tell me that there had been an error in sifting, and I am now assigned to the sector that will remain public. Which means I will be a civil servant etc. So, it's still a change of contract, being moved to Home Office, but government not private orgs who will cut salaries by a third. I am not sure I believe it and am half expecting them to change their mind again. but, if it is indeed correct and I will take it as correct, then it's bloody great, although they may well still go down the route of medical retirement if i don't get a grip on my pain levels so they are manageable. But. regardless of everyone at work convincing themselves that private is not worse than public, I had a sense of relief when I got the letter. So wine or brew and cake to everyone to celebrate.

LostInWales Wed 12-Feb-14 19:31:53

Pavlov that's bloody brilliant news grin. Can I listen to that song near DS'?

I've had great news too <awaits evil green eyed looks and comparison to Shiny Dave> a hospital in our trust phoned today and said my pain clinic had been in touch because they can see me quicker (a bit further away but TBH everything is far away from here!) so would I like to come in this Friday for injections to my SI joints under sedation! I am over excited and terrified and scared and worried and excited. The only problem is I have spent 20 years being the radiographer during these so I have watched an awful lot and held a lot of patients hands as they were done, it's not the nicest looking needle <wibble>. I know OYBBK has had some, anyone else? Could I get away without the sedation or shall I just go for full on chill out mode? What if they don't work? I will be devastated, I feel like I've waited so long for them. Eeeeek.

PavlovtheCat Wed 12-Feb-14 19:39:39

losty he is 14? or your younger one? well, my best friend took his 11 year old with us, for his first concert grin, actually though, he swears a LOT. And he swore a lot yesterday, both talking and in his songs! however, that particular song, I don't think there are swear words, references to anything illegal or sexual. I will have to go listen to it again to check grin

PavlovtheCat Wed 12-Feb-14 19:44:39

oops, pressed enter too soon.

That's fantastic news! I think, especially as you have been the radiographer, and have an idea what to expect, you should go for full sedation if you have enough support to help with your children. I can't answer anything about the procedure itself and if it will work, but you can only give it a try.

livelablove Wed 12-Feb-14 19:49:08

wine cake great news Pavlov and Losty! No comparisons to Dave Lost as long as you don't go by helicopter.

Love the boots but I find it hard to get a good fit on my calf. I need to stick with the diet for a bit ages. I will have to stick with trainers for now.

magso yes please do a link if you can I am short too. Can you explain how the wedge works? I can't understand it being comfortable to sit at a sloping angle.

livelablove Wed 12-Feb-14 19:54:28

I couldn't listen to the song on.my phone but found it on here losing days

lost good luck with the injections.as you can guess I am very interested.yay Pavlov staying in the warm fur lined rut of the public sector (that's not a criticism I'm a long term member)

PavlovtheCat Wed 12-Feb-14 20:28:42

denial I need slippers now. I wonder if I will be able to move about the civil service like my mother did? Currently we are not civil servants, neither are we local government workers. We are public sector employees, so that route of transferring to other civil service posts have never been open. I wonder if that will change. I said to DH for a joke that I could join the foreign office and be a diplomat. He pointed out, laughing hard, that would require some diplomacy and I probably the least diplomatic person he knows grin

Coldlightofday Wed 12-Feb-14 20:42:03

Message withdrawn at poster's request.

LostInWales Wed 12-Feb-14 20:47:30

That song is great Pavlov, he's quite easy on the eye isn't he wink. I can't quite hear all the words properly but tomorrow I might get my super dooper new bone conduction headphones delivered so I will include it in my listening to music I can finally hear afternoon. Is it a bit odd I like him even more because he had ear moulds like me? I know his are because he is a fabulous gorgeous musician but y'know, bad back, ear moulds, he's obviously my spiritual twin wink.

Will go for the full on sedation, DH is going to try and have a day off work which is tough as he is a primary school teacher but there will be a way and my parents are going to have the children over night, it's the first time in a long time I've had family around to help so it's just perfect timing. Did you know that in the fact sheet they emailed me it says I can't sign any legal documents for 24 hours after the sedation, that has made me grin. I should try and live blog it to you all as I have it done, could be worth a laugh smile

livelablove Wed 12-Feb-14 20:50:11

<spies cold creeping in and waves>

Oh dear just made an undiplomatic comment on aibu, must be listening to Frank Turner that does it.

Coldlightofday Wed 12-Feb-14 20:55:30

Message withdrawn at poster's request.

livelablove Wed 12-Feb-14 21:12:58

cold everyone is very lovely and if you need any advice on your back they are experts. Or if you want to eat cake and drink wine and chat about Frank Turner also fine smile

PavlovtheCat Wed 12-Feb-14 21:26:19

<passes hot water bottle and a brew to cold> you are welcome to join our party! Before you know it, you will not be a stranger. And, I posted on your other thread, so that's two you 'know' grin How are you feeling?

live oh link to that thread? I love to put my foot in it occasionally on AIBU myself...

losty oh yes, pleasing on the eye grin DH doesn't get it. He is Not Cool and he is a geek he says. What's all the fuss? well..he is as pleasing in the flesh as in photos, and his voice sounds amazing, he rocks a gig, something about a rugged, tattooed sweary angsty man who sings and plays guitar...what is there not to like grin

PavlovtheCat Wed 12-Feb-14 21:27:19

losty I love that you are soul mates. but remember you got to share k? I might not have the ear pieces, but I got that back thing going on...

Coldlightofday Wed 12-Feb-14 21:28:11

Message withdrawn at poster's request.

PavlovtheCat Wed 12-Feb-14 21:31:37

oh, these earpieces that you are getting losty are they the sparkly ones you were saying about? If so, then you are gonna rock yourself, you just need the guitar and some tattoos grin

PavlovtheCat Wed 12-Feb-14 21:37:45

cold do you have pins and needles or altered sensation in your saddle area? which is backside/groin area/genital area. Anywhere, not necessarily all over? Are you using your bowels ok? going for a wee> pins and needles in your leg is a sign of nerve entrapment or aggravation, which need to be addressed but, there are some red flags you have raised which may need addressing now, rather than when you next see your GP. I don't want to be alarmist. So I will link you to the NHS website for Caudia Equina Syndrome rare, but a medical emergency. Sciatica is mostly linked with disc problems so it is very likely that these new symptoms are linked to your back pain.

if you have any of those symptoms, with or without severe back pain, you need to go to A&E. now. It is much better to go there, and be sent home with proper pain relief than leave it and risk long term problems.

PavlovtheCat Wed 12-Feb-14 21:41:50

I don't know about the left arm pain though. Could be transferred pain? I sometimes get a flu like feeling in my hands, feet, lower back in particular and some of the rest of my body just before I have a 'relapse', more prior to my surgery to remove the pokey out bit of disc, and I am almost certain it was caused by a bit of the disc gunk (technical term?) squeazing out, and as it's toxic my body reacted to that. Sometimes, I throw up too with that sensation. That may be what is happening to you, if your disc has actually ruptured then those toxins will be right near your nerves. That is not, you understand a medical hypothesis, it is my own interpretation of why just before a huge flare-up, I know it's going to happen due to flu like feelings, puking, then within a few hours, my back goes properly and I am floored for weeks.

PavlovtheCat Wed 12-Feb-14 21:46:34

just to emphasise cold that my own GP, OOH, physio etc, have all stressed that it is not just complete numbness of the saddle area that is a red flag, but any change in sensation, ie pins and needles, numb patches here and there, might not be the whole saddle area.

LostInWales Wed 12-Feb-14 22:43:57

<waves at coldlight, I'm new round these parts too. Inhales slice of lemon cake>

Pavlov, have you ever thought you might have something more like rheumatiod arthritis? It's just you mentioned the flu like feeling in your joints before it all goes tits up and that is very similar to me. Even if you have a negative test for rheumatoid factor it might be worth keeping an eye on things. Now onto more important matters, geeky angsty tattooed growly singing man, what is not to totally adore in that? I have glitter ear moulds for my hearing aids now, my favourite one is pink gel with silver glitter but I am getting some clear gel with rainbow glitter for my next pair (they need replacing every year or so). The bone conducting headphones are actually for people who like to exercise outside but the best reviews they have are from people like me who use them to hear music which isn't really very easy with digital hearing aids!

LostInWales Wed 12-Feb-14 22:45:07

I have tattoos already, see he IS my soulmate (who I will share, promise) I have one very small tattoo from when I was young

livelablove Thu 13-Feb-14 00:47:45

The aibu thread seems to have gone boring sensible so I suppose I should stop MNing and looking at shoes and go to bed.

Glad for all the good news tonight.

matilda good luck with the flight home, it is not great weather here I am sorry to say but i expect you will be sick of all that sunshine by now.

Matildathecat Thu 13-Feb-14 01:15:20

lost I had a SIJ injection just before I came away. It was fine. No sedation offered or needed. I did get a cup of tea and a biscuit afterwards smile. I think it's definitely helped my leg pain especially in my buttock. Back pain, not so much. The guy who did it said that if it did help he could offer a much longer term injection. I'm having facet joint injections next. Having seen the arthritis on my X-ray, I'm hopeful this could help my back pain. Of course it's all complicated and I don't for a minute imagine any one thing will be the answer.

cold, welcome. Sorry you are suffering. I clearly remember the agony of the early days sad. Not sure what you are taking, but for nerve pain I have gabapentin (three times a day) and amytriptiline (at night). Both work for me but they do both make you drowsy although this wears off so they are for a longer term use than a week or two. They also take a while to really work. I also have naproxen for an anti inflammatory, Omeprazole to protect my stomach (vital) and cocodamol/ tramadol. I rattle! You have probably worked out that we all love heat and lying down, too. Hence lots of time chatting here. How long has this episode lasted? Physio or anything?

Your arm thing just reminded me I had that, too. I did get checked but we concluded it was actually positional. I was lying down a lot and kind of off to one side so it was genuine pins and needles, not the sinister kind.

pavlov great news! Hope at least one of my many applications resolves soon. I'd like good news, too ( petulant lip sticks out).

Last day now. Flying home late evening so I'd better get moving. Steady? Not today!!!

LostInWales Thu 13-Feb-14 07:42:07

Oh Yes! Heat and lying down <she types whilst supine on the dogs beanbag over the under floor heating> I do worry my boys will look back on day and realise most parents don't start the day like this!

I might see if I can opt for no sedation then but I think as a radiographer I might wind myself up imagining what is going on! I hope this is the start of lots of different interventions to make things better, I don't think facet joint injections will be offered because they can only do so many and I have damage to every single one!
Have a lovely flight home, bring some warmth for the rest of us smile. (we have snow this morning, SNOW!)

GoodnessKnows Thu 13-Feb-14 08:51:22

Hi Cold,
Lovely cake! Really zingy.
And you're not a fraud.
(Quick hug before falling back to sleep - I'm on so many drugs).

magso Thu 13-Feb-14 09:38:13

Coldlight I have had the burning pins and needles you describe in my arms (right usually). In my case it is due to a problem in my upper back and compression on nerves and or vessels possibly from scarring or tight muscle/tissue gaps. I have a few unwelcome kinks in my back and when one bit plays up the compensation can upset another. Osteopathy or the chiropractor can usually reduce the problem, although it usually takes a few visits, to free me up and get me out of pain. I also find stretching and gently (slowly allowing my weight to transfer from feet to arms to half hang) hanging from a chinning bar with arms wide helpful. We have a bar (set up at the top of a doorway - used to rock climb so needed arm strength) so it is low enough to use you feet. If it is my right side playing up, I hang more from the right arm IYSWIM. I do this very gently and keep my feet on the ground - no jerking or bouncing! I would advise getting help if you can afford a chiropractor or osteopath as we are all different and yours could have a different cause.

livelablove Thu 13-Feb-14 09:49:34

Yes I have recently started getting some discomfort in a different area of my back. I am bending more stiffly from the waist and having problems squatting due to my leg pain, so I think I am now bending the upper part of my back more when picking things up. I know yours has come on quickly but maybe if there is a weakness there, do you feel any pain in your upper back or neck?

PavlovtheCat Thu 13-Feb-14 14:51:38

Back has gone. Fuck. Flu type feeling, straight down legs, through back, followed by contraction type pain, sweats as the pain shot up and horrendous back pain. And now i can feel muscles seizing up. Happened at work. Managed to finish. Got swimming lessons for kids. Fucking hell.

matilda safe journey.

losty I have seen those bone conductor headphones, there's some waterproof ones for swimming. You really are kinship with Mr T, it seems! grin I remember someone once mentioned RA, but I don't have most of the symptoms I don't think, doesn't it affect your fingers and feet rather than back? I know I don't feel right, but doc did a blood test, an mot and it all came back ok, would they Check for those markers in a normal blood test? It's probably nothing more than me being a weirdo.

livelablove Thu 13-Feb-14 15:19:13

Oh no pavlov not long since last time and weird about the flu symptoms. Very gentle hugs.

LostInWales Thu 13-Feb-14 17:13:40

Oh fuck Pavlov, I'm gutted for you (although in an aside my spell cheker now offers your NN with capital and everything!). Do you have a strategy to get better quickly of do you just have to hibernate and wait it out? I always neck soluble paracetamol as soon as I feel the fluey achey bones coming on. The only good thing is wheatbags and rest though isn't it. I hope it cheers you up that the first new album I have downloaded is our lovely Frank's most recent. I LOVE Loosing Days even more now I can hear the words properly, we should start a special fucked back Frank fan club. He'd love us the most for sure. Can't talk long because my parents are staying but I have inflammatory spondylitic arthritis which is auto-immune like RA but affects the joints in my spine/SI joints first and is only now taking out all the others as well. You can be sero-negative as well, I think one third of people are and still have this form of arthritis. Back later, going to dance round the kitchen (carefully) listening to proper music for the first time in about 10 years, it is amazing grin grin grin

LostInWales Thu 13-Feb-14 17:35:19

<boogies back in> SORRY, that message should have included 'but don't panic, having an inflammatory arthritis is good news because there are heaps of drugs to turn it off again.' Just in the kitchen thinking 'Losty you arse, don't tell someone they could have an auto immune disease without pointing out the giant silver lining.'

PavlovtheCat Thu 13-Feb-14 18:14:46

live it's called law of sod for a. Thinking it's getting better and b. talking about the flu symptom i sometimes get, although tbf I talked about it as I was feeling little signs, I wonder if the Gig took it out of me more than i realised. No plan other than to take shit tons of drugs this evening and try to get to work tomorrow, one day til the weekend.

losty I know it's sounds daft! and I worry the doctor will think I want something actually wrong but, I would quite like to be told that it's not just a screwed back making me feel like this. But the it is something that can be helped. I just don't want to go back again and say yet more things that seem wrong, I haven't mentioned the flu thing since last year when he looked at me like hmm confused (as did other professionals) I am so pleased that the first album you have downloaded is frank! You should tweet him or something and tell him he should be honoured you are dancing for the first time in years to his music!

My foot has gone numb, well, sensation has returned somewhat, not fully, but as I was driving I could feel it going numb, as my leg lost some strength, not enough I couldn't grove, but I could feel it like a band had gripped my foot, like a really tight sock sensation.

But, although I felt tearful at work, worried people would be like 'ugh. Not again' I don't feel too down, guess that's the drugs yeah? grin fucking fuck. It's just fucking never ending.

Hope you guys are ok. live how is work atm? How is the calf and foot? losty is your injection tomorrow or next Friday?

goodness how are you? And scone ? Who else has had ops recently?

denial how are you feeling too I remember your pain had increased! is it more in control ATm?

livelablove Thu 13-Feb-14 19:38:00

Had a bit of a bad day at work today, not back related though. I have never really got on with this job, but somehow have got stuck in it for years. It has very convenient hours for fitting in with looking after my dd. Dhs hours at work change soon and this may make it easier to find a new job, but this recent back problem makes me feel less confident than ever. Feeling a bit achy this evening too. Luckily only one more day till half term. Hopefully I will be able to rest my back from any lifting but also do plenty of back friendly exercise.

Hope you are all OK and if not hope your drugs are working.

PavlovtheCat Thu 13-Feb-14 19:58:35

quick question. muscles spasming. I would normally take diazepam. However, I have taken codiene, and norttripyline. diazepam has a potential sedative effect, as does the others (actually, codeine makes me wired and not able to sleep). Can I take diazepam, low dose, with those drugs? I can't find the instructions for nortriptyline which talks about what to avoid drug wise etc.

I remember once, I cut through a slow release tramadol and the effects were scary. In fact, matilda and losty you should take note. DON'T EVER do that! the slow release is sort of in rings/layers, and it breaks each lower down slowly, so when you cut it, you break all those layers at once. I had only wanted half (was trying to reduce my dose) and didn't consider that was not a good idea. OMG, I basically got a shit ton of tramadol in one hit and it increased my seratonin hugely, I couldn't stop my arms/legs/head from moving, like proper head banging, rocking, sweating, really really agitated, I was terrified (it's called Seratonin syndrome or something similar) So, I am worried about that happening if I take too much seratonin increasing drugs.

I know I can take codeine with nortriptyline, as that was discussed with the nurse, and I know I can take codiene with Diazepam as they have been prescribed together by GP many times. But, all three? I won't take any I don't think.

PavlovtheCat Thu 13-Feb-14 19:59:38

live sorry, just saw you had a bad day at work sad aw that's shit. It's bad enough to drag yourself into work when in pain, let alone if you don't really enjoy it that much. I hope your DH's change in hours means you can find a better job more easily.

Coldlightofday Thu 13-Feb-14 20:56:41

Message withdrawn at poster's request.

PavlovtheCat Thu 13-Feb-14 21:00:42

oh I had that too cold, I panicked when i couldn't get into mn for about 2 minutes! grin

Coldlightofday Thu 13-Feb-14 21:08:46

Message withdrawn at poster's request.

pavlov it was probably me saying there could be an inflammation element to your flare ups. so sorry it's really bad again. I got through the weekshock , still feel crap but off for half term so I'll cope.

thanks for all the achey people must go and download Frank

PavlovtheCat Thu 13-Feb-14 21:16:13

denial shall I blame you then grin i definitely think there is inflammatory stuff going on as it gets worse when i stop naproxen, and there it feels like it's not just mechanical, whether it's the disc spitting out gunk or what, definitely eminating from that area of my spine and outwards.

LostInWales Thu 13-Feb-14 21:18:58

Cold I bet it was such a brilliant post we would have all felt inferior and you'd have killed the thread, the internet was looking out for you. We will all remember the awesome post that never was grin.

livelab having a crap back sucks your confidence though doesn't it? I hope you can sort a better job soon.

Pavlov that is excellent advice, I will now never be tempted to cut a tramadol in half well unless I need seriously distracting from real life. Injection is tomorrow, I have been googling if I should have the sedation offered and as DH has he day off and my parents will have have the children all night I am using sedation as a good reason to ignore valentines day <spits> and lie on the sofa in my jammies grin.

PavlovtheCat Thu 13-Feb-14 21:19:42

glad you have half term off denial, will you get a chance to relax a little? I have to work most of it, training and most of my team have children so we can't all take the week off. However, on the plus side, I have over a week left to take as leave before end of march, so I am going to take one or two days a week off until my leave is cleared! how great is that?! Starting from week after next (two days off next week) I am going to think about that as I struggle at work and use it to get me through the weeks, try not to take more sickness off, especially after my new good fortune work wise, don't want them to fire me before I get the feel the benefits of being a civil servant grin

Coldlightofday Thu 13-Feb-14 21:25:01

Message withdrawn at poster's request.

PavlovtheCat Thu 13-Feb-14 21:27:22

losty normal tramadol is fine, and I had done that on occasions with no problem (although any pharmacist would be shock at me even saying that I am sure) and that is why i didn't even consider it problematic with slow release, but they are made up differently. And, so are the slow release capsules, I had been splitting the capsules into around half, those are fine, as they are little beads, and they remain slow release beads when not in the casing. But, the slow release 6tablets they are the ones that are layers. And as such, I just did as I had done before, when the pharmacy gave me pills not capsules. It took me a while, and some help from MNers to figure out what the actual fuck was going on with me and if I should beg it to hospital. So, just don't try it. Wow, I sound like some of my clients grin

I have just asked my pharmacist friend about diazepam (she is consultant level, so proper knowledgable about this shit) and she said it is absolutely fine as doses are so low for diazepam and nortriptyline. So, yey !

PavlovtheCat Thu 13-Feb-14 21:31:29

cold how old is your toddler again? 3?

Work - I took uber amounts of time off. toddler, i had to teach DS from aged 2 to not run into mummy, to hold my hand and not be carried, to not be picked up all the time. I had mucho mucho tears from him and me as I didn't want to stop picking him up (or my older DD for that matter, they are my babies), but he had to learn the tough way. Unfortunately, he was not a quick learner.

cbeebies is fabulous, as a sticker books (thanks to puddlejumper who sent me some down one time) as it meant I could do those with him while in bed. Lots of stories, nursery rhymes on the ipad, snack food when DH was not around, relying on friends, grinning and bearing.

And, MN. Oh god dread to think where I would be without the fabulous MNers who helped me through some fucking shit times. You must use us to get advice, moan, shout, cry, and when things go well, celebrate. And to share links to shoe sales.

LostInWales Thu 13-Feb-14 21:32:04

Fuck knows Coldlight, I am mostly treating life as one of those terrifying Japanese game shows where they push you to extreme limits. Hopefully my mahoosive big prize is coming very soon. grin I do love growling at children though, how do you get paid to do that? I'll be in your folk band too, when's first rehearsal?

denial I think she has an inflammatory element too, shall we write her a note for the doctors? I can do good medical words.

PavlovtheCat Thu 13-Feb-14 21:33:40

losty i love that idea! we so are in those torture type shows aren't we? get given a little bit of reprieve, before back straight into it all again!

PavlovtheCat Thu 13-Feb-14 21:34:44

my DD does growling at people. I wonder if that's what I do without realising grin she growls at her DB when she is cross, like some wild creature. It's quite unnerving as she is normally lovely and empathic!

Coldlightofday Thu 13-Feb-14 21:38:50

Message withdrawn at poster's request.

PavlovtheCat Thu 13-Feb-14 21:44:00

cold it was horrible. I cried a lot during that time, I felt like such a bad parent. it was never meant to be that way. He was meant to be carried, like his sister had been. He was meant to ram into my legs in a rugby tackle, and have sleepy cuddles from the car. And DD. it was so unfair on them. It still is, but it's more normalised for them (and me to some extent) now. DD has grown into a wonderfully compassionate child (she always has been luckily) and 'looks after me' but she is 7. I had a blog (well, still do but stopped writing on it as I was always so down when i wrote, I needed a break) and wrote some of the things I felt at the time. Maybe I will post a link to one of them. But, you might cry again. I cry sometimes if I re-read them as it was a sad time.

livelablove Thu 13-Feb-14 21:45:58

Pavlov there is a good probability that it is ok to take the 2 drugs together but you need to get it checked and check the dosage. If you can get OOH to check it out for you they may look it up if they are being nice.

PavlovtheCat Thu 13-Feb-14 21:46:34

Oh, and he is 4 now. Sometimes he forgets he can't jump on mummy (i remind him!) sometimes I forget that I can't pick him up and I do. Actually now he is 4, and as he is little for his age, he doesn't wiggle and if he jumps when I grab him under the arms, he takes his own weight into the air and then I can carry him, or he can stand on a chair and I will pick him up from there. But not too often. It's probably why he still comes into our bed though, at 4am or so every day. That and he knows I can't carry him back to his own room grin

PavlovtheCat Thu 13-Feb-14 21:48:16

live I did better than OOH grin i checked with my pharmacist friend. She said it's fine as they are low doses (apart from codeine which I have taken 60mg, but that's also fine).

livelablove Thu 13-Feb-14 21:48:29

Oh good just saw you found out that drugs ok.

livelablove Thu 13-Feb-14 21:51:03

Its good to have a pharmacist friend!

PavlovtheCat Thu 13-Feb-14 22:28:54

I forget to ask her things actually! I was about to call OOH, then thought, ah XY can answer this if she is about. And she did, and then we had a chat about our families!

livelablove Thu 13-Feb-14 22:46:41

That's great is it helping? You never know with ooh they might tell you or might be awkward.

I used to carry my dd a lot and I don't think that helped my back. I used a sling for walks but used to lug her about the house and things. Sad not to be able to carry the little ones though. I picked up my nephew when my back was really bad, couldn't resist.

livelablove Thu 13-Feb-14 23:26:19

It is good for kids to do things for themselves, so I don't think we need to worry about making them walk or even help with chores or fetching something for you sometimes. What I find hard is having the energy mental as well as physical to do things together. My dd has got into some bad ways since I have been bad watching a lot of TV and staying up late and things. Even though I am feeling a lot better it is hard to get back to what we did before.

GoodnessKnows Fri 14-Feb-14 07:42:15

Just butting in here. Too tired (woken from drug-like stuper by 3 and 6 year old. Latter seems determined to wake me every fucking morning to check if I'm here n ok by asking some inane question. Grrrr
By the way, he growls, like an animal, when angry. We actually call them 'animal noises'. I'm a teacher. Turow firm home and supply teach. My first day booked into a school is 12/13 march. I hope ok ready!

Yesterday, I didn't take my oxyNorm. Today, after speaking to the pain team lady at hospital (thank gd for her as go only wants to see me every two weeks to count my fucking pills!), I'm cutting down from 15 to 10mg oxycodone slow release. I'm treating it like a challenge. Rock on!

livelablove Fri 14-Feb-14 09:32:26

That's great goodness better to talk to pain team lady than GP anyway as she is probably an expert. I expect you will feel more normal once you cut out the really strong drugs, but don't go too fast. Go steady as our motto is!

I am feeling TFI Friday today. Hope I don't get moaned at over yesterday's work problem, it wasn't really my fault but can't help thinking it over and wishing I had avoided it. Blah. Our catering unit is an outside contract to the rest of the workplace and I am the only kitchen staff member, so you feel a bit on your own when things go wrong. Still at least it is the last day before half term. I am going to see dds class play after work also which should be nice.

LostInWales Fri 14-Feb-14 13:19:42

Listening to Frank Turner with a mahoosive cannula in the back of my hand. Nearly time, eeek!grin

Matildathecat Fri 14-Feb-14 14:29:14

How did it go lost? Hope it helps.

pavlov sorry you are flaring up again so soon. What a bummer. Hope you can rest over the weekend.

Home. sad. Made the most of my comfy bed/seat, though.grin. Oh to be super wealthy...

livelablove Fri 14-Feb-14 16:48:23

Welcome back Matilda! Although in internet world you have never been away. I guess you are already saving to go back.

Well got through my work day. It is short thank goodness and did not get moaned at. Now a week off work hooray.

How are you all getting on? losty hope listening to Frank made the injection go easier.

pavlov hope you are ok. Did you have to work?

PavlovtheCat Fri 14-Feb-14 17:20:35

matilda yeAh back safe, but boo to the weather right? Hope you are not too jet lagged. live how was the play? Glad work was ok. And Yey! For holidays. goodness good luck with the reducing! but nice and slowly! there is no race. losty hope the injection went ok! thank god for your new headphones and frank turner eh?

I made it into work. 8:30am appt due in, didn't turn up. I didn't have meds, or brekky, and was in soooo much pain! Took meds once in work and had porridge, forgot I had supervision with boss, was somewhat spaced and a bit wired blush oops! but it kept me through the day. I got up after 30mins sitting with pins and needles/numbness on my butt cheeks! Luckily that passed after 15 mins or so. But, sitting increases leg numbness, which reduced when I stand and bend forward a little, but increases, as does pain, when I walk, feels like leg is going to snap. And, still have odd viral type feeling in spine with pain. I was probably a bit too honest with my boss about how I was managing, and DH said I should not tell them too much ant things like me winging it and feeling it's a bit much to manage. He is probably right, just giving them info to suggest I can't do my job. That's what happens when you have supervision 2.5 hours after taking Codiene!

Now laying down, DH is buying nice incense and we having a nice meal.

PavlovtheCat Fri 14-Feb-14 17:21:17

My iPad has got the same illness that matildas has. It keeps adding exclamation marks. Grr.

livelablove Fri 14-Feb-14 19:16:08

The play was great! Dd was poor girl 2 and had a line to say.

Pavlov do you think you should go back to the Dr and moan about your pain coming back? Maybe he would push for further treatment or look into Lost's suggestion about arthritis

PavlovtheCat Fri 14-Feb-14 19:29:30

live how old is dd? Was it a Tudor poor girl? I ask as dd is doing Tudor stuff and they have done a Tudor dance this term.

I don't even know what to say to the go any more. I only went to see him a couple of weeks ago in person (normally talk over phone about my back these days) and told him I feel so tired, fed up bit generally unwell, didn't know if relAted to my back and just feeling rundown with it, or if other stuff as going on. However he paid attention to my thinning hair, poor skin tiredness etc, and so checked thyroid and a general Mot, checking kidney function (I only have one), liver etc, and it all came back 'normal'. I don't know if they test for inflammatory thingies etc in the normal blood test. I just don't want to keep going on about things being wrong all the time. I feel like such a moaner, trying to find something else wrong with me, and I really don't, I just want to feel ok, know what is bloody going on.

Sort of feel that everything has stopped, medical wise and not sure where to to next. Still not heard about my MRI and well given up on that. I need to have it through pals but just no time to call or write the letter needed.

It will sort itself out, it will ease soon enough. nothing that a bit of tlc from dd won't sort out she is currently putting make up on me, then nail varnish. So I look pretty for daddy.
grin

livelablove Fri 14-Feb-14 20:15:28

Aw TLC from dd is just the thing. Yes you are right they were doing Tudors. My dd is in yr 5, she's 9. I'm sorry to say she is not as advanced as some of her friends, who can speak a whole ream of lines or her best friend who has pushy "tiger mother" style parents and played a solo of green sleeves on the violin. But I secretly thought she was the best and the prettiest smile.

I know what you mean about not wanting to moan too much at the GP but its bad they (meaning medical people) won't do more to help.

LostInWales Sat 15-Feb-14 07:41:08

Morning! God sedation is a bloody lovely thing grin. I am the new owner of bilateral steroid injections to my SI joints and only on here will people understand the utter joy of someone sticking big fuck off needles into the back of your pelvis and causing you extra pain! I also have what looks like an extra large old school sanitary towel stuck to the back of my pelvis, which is nice wink. Anyway, consultant was lovely, even further away than the ones I saw the other week but he is going to call me back in 2 months and see how I am and if this hasn't worked inject contrast into my spine and see where the odd bits are and go from there. That is just so bloody marvellous, after a decade of being limited by back pain I can see a more optimistic future. Although they did say some of the sedative drugs take 24 hours to wear off fully so not to sign legal documents so maybe being happy is a side effect :-D

How is everyone this miserable weekend?

GoodnessKnows Sat 15-Feb-14 08:28:50

Love
Hope you weren't moaned at. I've cut oxy slow release from 15 to 10 but don't think I'll tell doc next week as may need to increase. Maybe. Will see. Whole week away. Off to see consultant this morning. But don't know care plan as other consultant didn't call to tell me, as promised.

PavlovtheCat Sat 15-Feb-14 08:38:56

lost yey! for big fucking needles! I really hope this gives you some of the relief that you desperately need.

goodness i think it's sensible to not advertise your titrating down in case you need to increase again, there really is no rush, if you need pain relief, definitely don't be stubborn. Hope you are feeling ok pain wise and your DH is being supportive, well more supportive?

I am not sure how I am feeling this morning - I am still in bed! I feel sore, but moving ok, and slept reasonably well, and haven't even got out of bed to go to the loo yet! My lie-ins don't consist of actually sleeping as DS gets into bed with us at stupid o'clock then when he is ready to get up he paws at my face for hours. DH finally got up, and then DD likes to come and tell tales on DS/DH if things don't go her way. Although, she has just been up for the millionth time with 'a cup of coffee tea' which is herbal tea made with the hot tap, not very hot as she knows she is not allowed to use the kettle grin yuuuuum. Luckily, DH also brought up a real coffee. He has said we are meeting friends for breakfast. I do want to go as I have not seen these friends for weeks and weeks, but, I also wan't to do nothing today. Recover from my week. I am going out tonight (2 nights with DH and no children this week, unheard of!) to a friend's for a dinner party as it's his birthday so want to be ok for that.

I now need a wee <sigh> once I am up, that's it, no returning to bed. So holding on...

livelablove Sat 15-Feb-14 08:45:03

Hi losty great to hear you got on well with the injections and that the consultant sounds helpful and will do more if these injections are not working.

Mumsnet was down last night so hope you were all doing nice valentines things or too drugged to notice grin. My dh was working night shift so I watched Despicable Me with dd. I enjoyed it, did you know the elderly Dr Nefario is voiced by Russell Brand? He also did the voice of the rabbit in Hop which was a good film, if your dcs are the right age and haven't seen it yet. Well you can see I have an exciting life! While suffering MN withdrawal I found this back website which seems interesting spinal health it also has forums, the mods seem a bit Ott iykwim but may be some useful info on there from posters. One thing I saw that might interest Pavlov is that DDD can lead to increased risk of arthritis so the two conditions maybe related.

PavlovtheCat Sat 15-Feb-14 09:00:14

I love Hop! well, I did, until probably the 50th time. I have been on the spinal health website a few times, read some interesting things, but found it hard to navigate. There info is good, but their forums are really difficult to get my head around, none of the threads ever really go anywhere. I posted a couple of times, but, I guess there are so many people positng with back problems, no-one every really replied. I do get emails from them from time to time with interesting articles but it just makes me go 'i wonder if that is my problem?' every time grin

Thing with arthritis, wouldn't that show up on the MRI? bone spurs etc? I don't know about the last MRI, but the first one didn't show anything like that, it showed damaged end plates, and the problem with the disc, but no foramen issues (stenosis), can it occur in 18 months? But, then, I also know RA and OA are different, but don't know if RA would show in the joints yet? I don't even know if I want to ask the questions. Can I just pretend it's going to get better? grin

It's funny, I now remember my mum having arthritis in her back, I mean, I always knew it, but never really linked it, til DH asked if arthritis is hereditary, don't think it is? She had it in her neck in her 50's onwards, always said she thought it was due to sitting by a window that was always open at work! She also had it in her hands, but I don't know if it was diagnosed as RA or OA, I suspect OA as she was not medicated on all sorts for it. I so wish she was about, as she may have information that I could do with knowing about.

LostInWales Sat 15-Feb-14 09:37:55

Goodness, great plan to cut down if you can but keep he prescription at the normal dose, you can always keep some for emergencies then when you would struggle to get a prescription quickly (probably goes against proper medical advice but when does proper sensible medical advice ever have sudden world encompassing back pain?)

Pavlov I had thoracic back pain for 5 years before my first x-ray (and that was because I was in a car crash!) it didn't show up until I had an x-ray at about 27 but then it was pronounced. With an inflammatory arthritis the actual inflammation in the joint causes pain first before bony damage actually occurs, I think this is why they go in hard and fast with the treatments nowadays, even if there are no good blood results, because if you can stop it before the bony damage (which is irreversable) occurs then it's a brilliant outcome for he patient (and saves money in the long term because they don't have to replace lots of joints!). I don't know if it is hereditary, my mother keeps asking me if I got it from my parents which is really helpful when you are adopted hmm. I did point out to her that it was probably too late now to take me back and ask for another one because the one she has is defective wink. Enjoy your cup of coffee tea.

I'm quite glad MN was down last night because I think I was mildly euphoric after one of the sedative drugs and I wouldn't like to be reading back the crap I had posted on them right now!

livelablove Sat 15-Feb-14 09:56:30

grin Losty I sometimes think i should ban myself from MN after about 9pm as my judgement of what to post seems to go when i am tired, but as i say dh often does night shifts and i get a bit bored here in the evenings, so i will not enforce my ban after all.

pavlov i just googled to see if arthritis is hereditary and there seems to be some types that possibly are or may be just the things that pre dispose you to it are.

livelablove Sat 15-Feb-14 10:13:27

Not that I am sure you have some form of arthritis as I don't know much about it. It is so frustrating that the Drs don't investigate more. Where is Dr House when you need him? He would have you in that MRI scanner in no time.

LostInWales Sat 15-Feb-14 10:21:03

Oooh, I dunno, wouldn't you end up misdiagnosed and given life threatening drugs a couple of times first? Mind you they always (well nearly always) leave perfectly healthy and looking beautiful and he is gorgeous so, might be worth it wink.

Matildathecat Sat 15-Feb-14 11:42:09

When I had the standing X-ray last week ( feels like months ago), there was clear arthritis around the affected vertebrae. The chiro said that basically once the discs have dehydrated and lost height, the surrounding bone inevitably becomes arthritic as the cushioning of the disc has been lost. You could see the difference between a healthy area and the damaged bits really clearly.

lost, I only had my left SIJ done and now my right side feels much worse. Think I'll ask for both next time. Overall I def think it's helped my leg and buttock pain. Having said that I haven't really reduced my analgesia other than when on hols as I didn't have to do much.

goodness good luck with your reduction programme. Steady. Are you actually feeling any better yet? Hope your consultant appt went well. I have a bottle of oromorph in my drawer. It's my insurance policy. I hope I never need it but having a standby is a comfort. I've actually got a frightening stash of drugs but I'm quite organised and careful with my consumption. I'm finding tramadol slow release quite good (150mg) but do need to top it up. GP recommended one a day but maybe 2would be better.. Anyone done that? One first thing and another mid afternoon?

My parents are fitter than me! Having said that quite a few of us in the family have had back and neck problems.

Lying down with my hottie after wet walk with friends in the park. Oh yes, I'm home!

LostInWales Sat 15-Feb-14 12:37:52

With the top ups I normally have one late afternoon to see me through to the evening dose and that's all but when I'm very sore I have one morning, one afternoon and one at bedtime! I think as long as you make sure you never EVER have more than 200mg in you at one time it's ok. I don't think GP's would go recommending this willy-nilly though because of the danger of people not being organised enough and accidentally overdosing. My GP made me promise to keep the 50mg slow release in a completely different place to the 50mg normal ones. I have the 100mg slow release for normal days but they are a different shape so not so easy to mess up! I can tell when I am having a brilliant day because I can get to 9pm without remembering my next dose, normally I am staring at the clock willing it on to 7.

I was SO pleased hat I had both SIJ done. I know that I can feel a difference in my upper back from the injections two weeks ago but that is spoilt somewhat by the pain on the other side grin My parents are WAY fitter than me but my mum can't help herself by pointing out she is older and I should wait and see how awful it is to be nearly 70. Most of the time I restrain myself from answering grin. Enjoy lying down with your hottie, I know it isn't quite Raffles but there is a certain joy to a hot water bottle on a damp cold day.

GoodnessKnows Sat 15-Feb-14 19:46:21

So shall I omit to mention to doc that I've actually cut down? I'd kind of thought of that but it's oh possible if hospital pain team are happy to have me call for advice.

Consultant appointment t was good in that he let me give him a 'thank you hug'. His actual words when I said 'I want to give you a hug to say thank you but you probably wouldn't want that!' were 'I'd not object.'
Had a teary moment. Also told him my hubby had seen him on our local village having had his hair cut. Must think I'm a loon / groupie. Lol

But very disappointing in that the other surgeon (rare tumour man) hadn't actually sent him any info on the histology or on the care plan (meeting tumour man held about that was only on Thursday). Frustrating - much. But you know what, I know how bloody lucky I am. I hope, at any rate. Dodged a fucking bullet. ('scuse my language).

First of all, to have found the tumour incidentally, to have had it removed (with a bit of bone drilled off, too), to be recovering at such a remarkably rapid pace, no 'bags' (was a real risk), no drop foot. It's as if nothing happened. Just not able to be upright for long. V sleepy, bumping into everything (drugs?) and ... v emotional at times.

Should I drop the amatriptaline or whatever next? Don't like the idea of being on anti depressants. Although was told they are for nerve pain. If they are anti-Ds, they don't bloody work! Lol
I've been really crying on the odd occasions. Like... sobbing. Feeling terribly sad (not pitiful but deeply upset) that other people aren't as lucky as me and are faced with a limited recovery or further nightmarish emotional and physical nightmares - either with back problems or cancer.
Just shit.
Gonna do a money raising thing when I feel up to it but doesn't feel enough.

People say, just focus on yourself, your own recovery, be grateful, blah blah blah. Just can't. I'm grateful but ... as I've said.

livelablove Sat 15-Feb-14 21:05:50

goodness I think you are already being positive thinking you are lucky. I think something like that does focus your mind on doing something worthwhile with your life, which is good. But you do need to get better first. I'm sure your experience has already helped others in that the surgeon and medical staff have learned from it. How about starting to write your story and when you are ready you could share it in some way, maybe online, and this would educate people about your condition and help anyone with a similar problem to know how you coped and how it all happened. Also sometimes helpful to write about things if you are down and get it out of your head.

helibee Sat 15-Feb-14 21:53:24

Hi Goodness, I've been following your story, you are amazing. Amitriptyline is not used as an anti-depressant, it is used for nerve pain. I was put on it after I slipped the disc in my back which pushed on my sciatic nerve. What dosage are you on?

I was hoping I could join you guys. I've had a constant back pain since September. I slipped the lower disc and had sciatica, then dislocated 2 ribs. They have all healed however I have been in agony where my kidneys are since August they don't know what's causing the pain. I have to have blood tests on wed as they think I may have a parathyroid tumour.

I have fibromyalgia and CFS and I suffer chronic back pain from that too. I'm taking tramadol, co-codamol, topomax & diazepam at the moment but nothing is touching the kidney painconfused

GoodnessKnows Sat 15-Feb-14 22:03:36

Helibee, welcome aboard (being a bit ahead of myself as I'm a newbie here, too). Here, I'm moving up on the bench. Squeeze in!
I am on 25mg amitrip
Forgot to take my 8pms so just downed my 8s with my 10pms. Hey ho

Am wiped out today!

An also intrigued. Without wanting to seem like I'm digging for compliments, I'm intrigued... how am I amazing? I'm bloody lucky and the surgeons are beyond words in their skill. But I'm a scaredy cat who has had no choice but to show up for the theatrics. Don't mean this in a brush-off or defensive way (coming across all wrong) but I've been whinging n whining, running into MN rooms (including this one - sorry) blurting stuff out with my eyes closed tightly, running out again, leaving nothing of use to anyone else. Amazing? Selfish n scared, I think.

GoodnessKnows Sat 15-Feb-14 22:06:28

And here's another dump-n-run: by gd does my bum hurt tonight! More of an a he than a hurt. But feels like muscles being torn back again. Yukky. I know that they cut them away to get tumour out. This feeling just makes me envisage it happening again. Surgeon says Physio can't harm even though I told him about it. But I keep overdoing it by trying to do all 10 of each exercise. Numb n tender. Ewwwww

Andro Sat 15-Feb-14 22:44:55

I'm bloody lucky and the surgeons are beyond words in their skill.

No argument there, they've clearly done an outstanding job.

But I'm a scaredy cat who has had no choice but to show up for the theatrics.

Wrong! As long as you are mentally competent, you have the option to refuse treatment.

Don't mean this in a brush-off or defensive way (coming across all wrong) but I've been whinging n whining, running into MN rooms (including this one - sorry) blurting stuff out with my eyes closed tightly, running out again,

Better to blurt your emotions/fears/pain out and have a safety valve for the pressure, then bottling it all up - talking/writing/moaning are all ways of coming to terms with what's happening (whilst you're whinging, your brain is processing).

leaving nothing of use to anyone else.

I've been following your story enough to know that your threads have almost become a support thread, not to mention that the next time someone arrives on MN with a similar journey ahead of them someone will point them in the direction of your threads. Sometimes just knowing that someone else has faced something similar and made it through can be invaluable.

Amazing? Selfish n scared, I think.

Scared is reasonable (you were facing a big op and potentially nasty results), selfish is reasonable (a bit of selfishness in a situation like this is what gives you the impetus to push for what you need in order to get though) - neither of these factor make you less than amazing, they make you human!

LostInWales Sat 15-Feb-14 22:55:35

Goodness you are amazing because you have got through a shitty run of luck which must have been scary as fuck and yet you can still see the good bits and are mega proactive in sorting yourself out. This means you CAN get through this, so pleased you have no bag or footdrop, even more pleased that you can list these positives instead of go poor me. I will join you on the sore buttock bench (or shall we just have a row of massive beanbags so we can get comfy and alter our positions every so often?).

<waves at another newbie>. Welcome but sorry you are here.

Had to laugh today, was still sleepy from the sedation (or the adrenaline wore me out from worrying about yesterday, one or the other) so I had a sloppy day today in tracky bottoms and had a nap on the sofa all cwtched up with my dog. I have to take my hearing aids out to lie down or they whistle. I woke up and put them back in to realise the room was noisier than before, sat up (slowly!) hair all over the place to see the room was now full of DS1's friends all half men half teen watching the Olympics blushblushblush. They didn't seem bothered by the ogre rising up in their midst though so I guess we are ok grin.

LostInWales Sat 15-Feb-14 22:56:43

<cross posts with andro> SEE you are so cool grin

GoodnessKnows Sat 15-Feb-14 23:25:44

Aha. See what you mean. You know, it's mumsnet that's helped with that (not bejng 'poor me'). Reading and being in direct contact with (PM and text), MNers who held my hand and who are actually worse off than me. Really can't explain how that's made me feel. Anything but 'poor me'. Just so lucky n want to help. Feel so bloody useless. Any ideas? Seriously.

Bean bags not helping as can't sit vertically. But pass the fat cushion for between my legs! Lol
At least I can turn myself these days. No leg straps, back drain or catheter. I'm a free woman.
In many ways ;)

Planning a sunglasses sale as someone I know wants to sell from my place. I'll contribute what's earned (my side) to a cancer charity.

GoodnessKnows Sat 15-Feb-14 23:30:47

Andro, aww. Speechless. You've both made me accept my panicking, doggy-paddle reactions.
I really hope that this 8 and a half week roller coaster, is going to give Somekne else hope. Even if they can accept their own journey and the 'natural' path of emotions along the way.

And I did nearly run. All the way up until 30 minutes before the op.

It's all just a literal pain in the arse now ;)

livelablove Sun 16-Feb-14 00:17:39

goodness do you think you are feeling that pain in the bum because you have reduced your drugs.

livelablove Sun 16-Feb-14 00:26:35

Hi helibee sorry to hear you are in a lot of pain, I hope they find out the cause soon and it is something not too bad.

PavlovtheCat Sun 16-Feb-14 00:50:37

heli welcome. As said, sorry you are needing to be here, but you are very welcome <passes hot water bottle, comfy recliner with somewhere to put your water bottle, painkillers, Frank Turner CD, and the pain transfer device> Did I miss anything there? How long will it be until you know about the cause of the kidney pain?

How are you amazing goodness? because, you have just gone through a horrific, traumatic experience, not knowing what your future held, with bravery, dignity and a fucking great sense of humour.

I have been out for my second night out this week. Literally unheard of. And fuck me I am feeling it now. In fact, i feel in more pain having spent an evening at a friends, playing Articulate and some other fun game, sat down and getting up constantly, than I did at the Frank Turner gig!

All my muscles in my back are now seized up, right up to my shoulders. Like one solid spine. So I have taken diazepam. I only drank two glasses of wine (not even big ones) and last glass was at 10pm latest, but don't like drinking and taking diazepam so i've only taken the 2mg. I have heard some shocking things people do when they mix alcohol and diazepam, although their mixing is more like a bottle of wine and 20mg diazepam grin but still cautious is best I think. I used to love drinking wine and would quite happily drink several glasses in the evening to wind down from work, in the week. Not every day, but maybe every other day, it was what got me through the day, evening, bedtime routine etc, that big glass of wine waiting for me. Now, i don't enjoy it so much, and don't look forward to it in the evenings, I can give or take it. It surprises me and I actually miss looking forward to it sometimes, but most evenings, I just don't fancy it any more, tastes wrong. Fucking drugs, mucked my wine taste buds up!

losty how are the SI joints feeling now?

livelablove Sun 16-Feb-14 00:59:16

Losty funny to wake up from your nap, in a room full of lads. I guess you will have to get used to that now your DS is 14. Hope the injection site is ok and not sore. Is it another of those that takes a few days to work?

PavlovtheCat Sun 16-Feb-14 01:02:12

oh yes I meant to comment on that! how embarrassing! and shock that they weren't even bothered?! or, could they have been talking to you and you didn't hear them ? Did your DS say anything when you woke up amid them, hair all over the place? grin shock

livelablove Sun 16-Feb-14 01:09:34

Pavlov you certainly have to pay for your social life these days! What you need is a roman banquet style meal where you can recline on a couch. Get your friends to organise that next time.
Your missing enjoying wine reminds me of when I was pg and went off coffee. It was weird.

helibee Sun 16-Feb-14 01:58:57

Goodness, as the others have said, you ARE an amazing woman. You have have been honest, brave and I know you haven't had a choice about the situation but you did about the manner in which you faced it. You have inspired me and as Andro said, if others are ever in the same boat as you, your threads will be where they will be pointed to.

Pavlov, I can't imagine 20mg diazepam and wine are a good mix, although floating on a cloud maybe grin

I'm waiting for 2pm so I can take some more painkillers, which is about now I guess. I think anxiety is adding to my insomnia this evening!! That and my 22 month old son reading Peppa pig to me with his Lego light in his cot, apparently he can't sleep either and "Peppa no like 'leep mummy" grin

GoodnessKnows Sun 16-Feb-14 09:15:32

I'm blushing n emotional.
D'ya know, I didn't have much of a soh before all 'this'.
Appears that we all have one installed in our steering wheels. Inflates suddenly on impact. I was a right old misery guts working hard, loving it but feeling sorry for myself

GoodnessKnows Sun 16-Feb-14 09:23:25

Live, I felt this pain in the arse (muscles) straight across the back of my bum when I do the squat things with one leg forward, one back. I'm
A fool, really. RNOH physios showed me a couple of each of the exercises just before I left - to check that I'd be able to do them independently she go for home. I then sank into my hospital bed. I was packed off home with a sheet telling me to do 10 of each. So I did the full-on 10. Nuts! Can't seem to trust Physio I visited. She told me to scrap my RNOH routine and just so 4 'pansy' ones. So now, nutter here is doing the originals (5-7 vs 10) PLUS wanky ones.
But get this: my nunny machine has just arrived.
(Tumour was near nunny nerves). So, I'll be visiting my nunny doctor again tomorrow to learn how to programme my, erm, dildo.
My life just gets more n more exciting. Lol
DH thinks it's hilarious.

Things could've been so very different.

I'm on happy-path.
I think.
Waiting for care plan, still.

livelablove Sun 16-Feb-14 10:14:17

Lol goodness that brings a new meaning to doing your physio exercises!
You are right when things get tough having a laugh with friends (or a cry) gets you through.

PavlovtheCat Sun 16-Feb-14 10:39:39

heli unfortunately diazepam and alcohol can have a very unpleasant interaction and can increase violent behaviour, loss of control, completely blackouts, during which time behaviour can be completely chaotic. But you have to use a lot of both for that to happen, not anything like the levels we all drink and use meds. I don't know anyone that takes 20mg diazepam at once for pain relief!

GoodnessKnows Sun 16-Feb-14 10:42:57

Feeling lonely this morning (exhausted n trying to sleep). Not up to visitors but have sen what a beautiful day it is outside.
Thank goodness for MN... and ebay.
I'm a naughty, naughty girl.

PavlovtheCat Sun 16-Feb-14 10:46:37

heli your little boy sounds lovely, even if he should have been asleep at 2am!

Hope everyone has a relaxing, low pain day. If the sun is shining, enjoy it if you can.

PavlovtheCat Sun 16-Feb-14 10:47:08

ooh what have you done?!

LostInWales Sun 16-Feb-14 10:58:43

We're here goodness. The best sort of friends because not only do we know how fucking annoying being limited by your body is you only have to 'see' us when you want too and if your want to ignore us we won't even notice you are here wink.

I SO want to go to the beach but DH is off to visit his family a couple of hours away and I don't fancy trying out driving with my new back in his crappy car with three boys and two whippets on the back seat! I have consoled myself with a stroll round the garden, sun was lovely and warm on my face, I filled all the bird I feeders and noticed a few little blue forget me nots flowering. Lovely. DS1 was totally unphased by his mother emerging from sleep in the midst of his friends. He is ASD and total cliche of a brilliant science/maths brain with not much of a clue about social skills! He has an ace group of friends who grew up with him and love him as he is smile. He's a lovely gentle giant of a boy.

LostInWales Sun 16-Feb-14 11:00:11

YY goodness what have you bought?

Morning Pavlov, how's your muscles? Did the diazepam do the trick?

helibee Sun 16-Feb-14 11:05:33

Wow, goodness, you sound like you are going to have buns of steel and kegels to match wink I hope the gynae can help you with your new machine.

Pavlov, I don't drink which is probably a good job from what you describe!! I did try and lift DS2 at the beginning of November and my back seized up completely, it took 12mg of diazepam before I could move again. I wasn't allowed to lift him again until the middle of January!

What did you get on eBay goodness?

livelablove Sun 16-Feb-14 11:05:59

My dsis once got up to 60mg diazapam for anxiety, it didn't work for her and they kept upping her dose. But this shows how low dose is for back pain.
How is everyone this morning. Its sunny here but not doing anything right now. Debating taking dd for a walk. This afternoon my mum is coming over and we will compare bad backs and have a roast chicken. It is the easy roast I have started doing since my back went with one of those roast in the bag chickens and frozen roast potatoes, but better than nothing.
Have fun on eBay goodness. What are you shopping for?

LostInWales Sun 16-Feb-14 11:13:30

<looks sadly at her 2mg's and feels a bit of a wimp>

I just spotted I put DS1 one is ASD, no no no he has ASD before I get drummed out of MN for getting it wrong grin

It must have been so depressing not picking your little boy up, he sounds so lovely.

PavlovtheCat Sun 16-Feb-14 11:17:33

live 60mg shock wow! It is known as Mother's Little Helper though isn't it? grin

losty sensible to not want to risk messing up your shiney new back. Is it feeling 'ok'?

I am sore today, but the diazepam took the edge off enough that I slept well, and my entire back doesn't feel like a board. Just got to get on with it as I DH is working and I have a children's party to take the children to. Luckily, host is a good friend so I will mostly eat party food and drink coffee.

PavlovtheCat Sun 16-Feb-14 11:19:05

I have read and heard that 5mg for back pain is better. And the Back Sufferers Bible recommends at least 5mg if it is needed at all, she talks about taking enough that you are fit for nothing, as the point is, do nothing, relax those muscles. My GP won't prescribe me that much, I did ask him! he said if I need more than 2mg, take 2.

PavlovtheCat Sun 16-Feb-14 11:20:42

live that roast sounds perfect to me!

Oh, I found another thing I can't do with a bad back...I can't scoop out ice cream from a tub with an ice cream scooper! It hurts my back ! how about that!

GoodnessKnows Sun 16-Feb-14 11:25:44

Pavlov, let the scooper/ spoon sit in boiled (kettle) water for a couple of minutes, first.

GoodnessKnows Sun 16-Feb-14 11:28:20

Helibee, I'm gonna have a tight arse and fanny when this is all over with. Lol
Don't mess with this kitten!

Going for Von Furstenberg dresses and Kennel & Schmenger shoes on ebay.

Matildathecat Sun 16-Feb-14 12:22:00

Hi everyone,

I've already managed to turn today from a good day to a fairly bad one. How annoying is that? I have the rare luxury of the house to myself for a few days so house is now nice and tidy and will stay that way smile.

Pavlov, hope your day goes ok. That's so difficult trying to carry on for the dc whilst longing for a lie down and some strong drugs.

Hi, Heli, sorry to have to meet you here but welcome. Having a tiny child must be sooo difficult. Sending you commiserations. Hope you get plenty of help and sympathy.

Goodness, well done with your progress. I think I've said this before, but my Pain Group physio was absolutely adamant that you should exercise under the pain. Much better to do even three reps of the exercise well than just going for volume. If you exercise to pain then you move less freely and no progress is made. It made sense when she said it! I wonder if exercising in the water would work for you, when you are allowed, of course. It's my favourite way of doing my physio as both warm and non weight bearing.

I've been considering this subject of telling people in our situation how amazing/ good/ wonderful they are in relation to their injury, operation or whatever. It happened to me a lot. I'm Mrs Cheerful Braveface. I hate moaning to friends or mentioning pain or other miserable subjects. In response I frequently got the 'oh, you're so good / wonderful' etc. this actually ended up with me feeling very conflicted and upset. I felt like I was living a lie. I'm not ok sometimes. I'm furious, heartbroken and deeply traumatised but I hardly ever show it. I'm scared to, actually. On the surface and indeed often really am, smily flippant and positive but it's hard to maintain. Seeing a psychologist has helped to identify these feelings but I haven't really addressed the issue. Thing is, I honestly feel that after a while everyone gets fed up with a misery. Who wants to spend time with a moaner? It is vital to me to see my friends very regularly and I'm scared to truly show my feelings for fear of being boring.

Sorry, I'm rambling. This is one place I really do moan so thanks for listening! And also, I'm doing my lovely friends an enormous disservice, I'm pretty sure they would stick around. Just trying to articulate why 'amazing and wonderful' aren't easy labels to have.

Enjoy the sun, everyone.

GoodnessKnows Sun 16-Feb-14 12:56:42

Matilda, that makes sense. Water makes sense too. Will try when I'm allowed in a pool. Prob won't get to one for 4 weeks (or just under) as not driving. Want to join a very naaaaiiice gym then, vs a posy one. Will feel more comfy around oldies and those who've 'been through the wars'.

Why has your day gone to poop?

livelablove Sun 16-Feb-14 13:05:48

Matilda did you mean you have been doing housework? no wonder you are feeling a bit down.

But seriously I know there was a thread recently about someone who hated it when people said I don't know how you cope, I couldn't, when the person had been through a traumatic time. My mum also said she hated that when people said it to her after something awful happened to her.

LostInWales Sun 16-Feb-14 13:06:37

Matilda that makes an absolute tonne of sense. As a family we have had an incredibly, impossibly hard year, I know exactly what you mean about 'who wants to spend time with a moaner' I think the exact wording of that goes round my brain so often. I'm very much a 'well at least the tramadol keeps me smiling' and 'there are so many options for treatment, aren't we lucky to live in the modern world'. When actually I want to go, 'fuck this, I am SO miserable, not only have my bones stolen my ability to do nice things whenever I want and look after my boys, they have taken my hearing and that sucks big time. Plus the world has conspired to break a lot of other people I love in even worse ways so I don't have anyone to support ME when I need it. This is horrible and worst of all IT'S NOT FAIR.' (I think the it's no fair needs a big foot stomp but we'd better watch our backs wink ) But we can't and we don't, we just keep on and paint on a smile. Although speaking of which I have become overly invested in the Clinique counter recently blush but I find the morning ritual of painting on layers of happy face really helpful. Plus I pay a woman to sit in a room with me for an hour a week and just spill it all out to her which is just the best thing in the world. Everyone should have one, whatever is going on. It's like the valve on a pressure cooker grin. Such a conundrum because it is human nature to say 'you are doing so well' 'you are so brave' when actually someone going 'fuck me, that's a right bastard, you poor sod' would probably be more helpful.

Pavlov I don't know how my back is feeling because I am resolutely Not Thinking About It. If that makes sense? I don't want to make it worse than it is by concentrating on pain? I don't know, it's an idea in my head but I can't really articulate it! I also have to admit that I have a prescription for diazepam from my GP because I have booked myself a holiday for my 40th birthday and I am scared stupid of planes blush blush blush.

GoodnessKnows Sun 16-Feb-14 13:22:43

Matilda, just rads rest if your post. I can only retain snippets of info, so respond bit by bit.
I completely understand where you're coming from.
I really do.
I find that even without trying, I put Mr Smiley face on around friends because, 7 times out of 10, I'm genuinely pleased to see my visitors (friends). But they know.
I made a Facebook group. I dragged friends and acquaintances into it. It's a secret one. And I spilled. I told them exactly what you have just said AND that I was scared that they'd not stick around to support me - as I needed them like life rafts. I did. Still do, even though I feel like I've approached, fallen and am now on the river but in shallower, smoothe-flowing water vs rapids.
They stuck. A few didn't. I felt terribly hurt by a couple who never posted even a 'xx'. Those who sent messages like this and never contacted me again (will now copy n paste for you):

Hi Karen, the text I sent u was not delivered. very strange, so sorry for delay. I am very sorry to hear what u r going through and my heart goes out to you. I can only imagine the pain u r in. Just stay positive and believe that everything would be fine and it will. Thinking of you. X

And this:

I will surely make a plan to come to visit. Take care.

Me: lovely. Just let me know which day you'd like to come.

Them: nothing. Ever. Again.

Back to me: but despite the odd hurt and non-'friendship' realisation, I've been overwhelmed. I added to my group everyone who expressed concern or said the casual 'let me now how it goes'. I went against (with all the mental strength I could mister( those insecurities/ little voices into head that said 'she won't care', 'I'll look needy / selfish/ whatever'. My need for 'life rafts' kept me grabbing on.

I was absolutely overwhelmed. I've learnt so much. I used to think that I was alone. No friends. Just acquaintances. Turns out I owed more credit to those acquaintances, that people do care. That I'm not alone. And that scary fucker of a black hole I was falling into, was closed. The hands seemed to mesh together under my (achey) bum.
Brought me up again. I was able to face everything I was going through.
I had MN and this secret FB group.
Damn it, they even got to know about poo-gate!
Lol

I held nothing back.

And humour popped out. Surprised me. I became me. Warts (emotions and, literally, shitty stuff too). I became 'brave' on there as I thought 'what the hell. If they can't handle it, they won't read it'.

I did get a bit freaked out a week or so in when only very few responded on the group. I posted that I was hurt. (That was scarily honest for me) and that I would remove anyone not interested or who couldn't handle it, that I'd possibly not be able to were I them, etc.
I had a number of texts and FB PMs to say 'please don't remove me. I care but I just don't know what to say'. I was touched. So I left it. I carried on blurting my stuff. And it's actually reeeeeerrally helped me.

Anyway. I've no idea whether this is of any interest or help. It's not a suggestion as FB isn't for everyone and, I suppose, it did take some guts (not that you've not got guts). I was pretty desperate for support n scared of falling in that black hole.

Just thought I'd share it.

Back to Breaking Bad now, and soup before druuuuugs.

helibee Sun 16-Feb-14 13:36:59

I completely understand how you feel about the feeling crap and falling apart on the inside but feeling like you have to smile on through. Ever since I've had fibromyalgia I've had that because I don't look like every part of my body hurts and I like smiling, people tell me how good I look. I also put on weight with the amitriptyline last year, so when I came off of it, I of course dropped the weight and again I keep getting told, "oh you must feel wonderful"!! I wish my body worked that way smile

My DS1 has just bought me some yummy soup and we are snuggled up to watch a movie whilst ds2 is napping with DH.

DS1 is 6 and has been at referred to an immunologist as they can't work out what's causing his pain and fatigue. His consultant is next to useless and she thinks I'm a pushy mum. Well yes I am as I don't like to see my 6 year old fall asleep at 4 pm or not able to go to school because he can't stay awake. He often sleeps for 14-16 hrs!! He tested positive for CMV, so they think he may have developed CFS from it. Last year they thought he had bowel cancer so we are at least in a whole better realm of diagnosis! It's very draining though fighting for a diagnosis constantly.

Sorry I'm rambling. . . Off to eat

GoodnessKnows Sun 16-Feb-14 13:43:21

Helibee, so worrying re your 6y old. Stuff what they think (pushy mum). Mummy's instincts are so important and your 'evidence' / his symptoms are clearly not right. ;(

helibee Sun 16-Feb-14 14:18:19

What you posted there goodness is what I admire about you. I've become quite introverted but I'm finding I'm needing peoples support more and more otherwise I'm falling apart. Well done to you for asking for it and for being brave enough to post the gory and vulnerable parts too.

Thank you for your message about DS1. I will fight for him. DH and my in laws are amazing too as is our GP. His first consultant at Yorkhill was fantastic too but now that they have ruled out cancer she is just so laid back. She also really upset ds by telling him that he needed to cut out his pain relief angry last time we tried cutting it down on her say so and he needed to be put onto the dihydrocodiene!!! Thankfully our amazing GP is an amazing advocate for him and said no way, so she upped his ibuprofen and paracetamol again and his pain is back under control. He has swollen lymph noes in his bowels and in his neck which seem to cause him a lot of pain. The consultant says, well other children don't normally need pain killers. Well I don't care what other children want, my child does and I'm so fed up of seeing him cry in pain. I think I need to film him to show her next time.

We have been filling out the frenchay activity chart and she was looking at Christmas week, when he had a bad week. But of course DS says, I definitely was the first one up on Christmas Day, nice try buddy, but we have video evidence of us waking you up after you being asleep for 16 hrs and the first words out of his mouth were "please can I have 5 more min". So his consultant looks at me like I'm lying blush thank you child!

GoodnessKnows Sun 16-Feb-14 14:24:22

Film it of you need to. Just sounds so clearly poorly.
Someone once said to me about their own DC, 'if I don't stand up for him, who will?' That statement has always stayed with me. Isn't it true! We mummies are the only people who will fight (if necessary) for our DC's rights to be healthy, happy and as well educated as possible. Professionals and relatives either forget, loosen the reigns or stick their heads in the sands of denial. It's natural for them to do so. As natural as it is for us mummies to stick our necks OUT. Ignore those 'pushy mamma' labellers. Ask them the question: if YOUR child had (list symptoms on your phone for long n lengthy symptoms), would you sit back and let it be?

LostInWales Sun 16-Feb-14 18:44:01

My internet went awol <grabs everyone to her chest> that was horrible.

helibee Sun 16-Feb-14 18:47:23

<strokes Lost whilst talking in soothing voice>
That must have been a very scary moment for you!

GoodnessKnows Sun 16-Feb-14 19:34:56

Yeowch. Let go! Easy. We're here now, honey ;) how you doing?

LostInWales Sun 16-Feb-14 20:03:36

Good, it's ok, I think with a bit of counselling and a vat of wine I can get through this! I actually went out of the house in desperation, I spoke to my children and played Grand Tourismo with the giant teen. It was ok but I'm glad you are all back with me now grin.

Helibee you go fight for your baby, poor little thing. What is CMV? My DS2 had an auto-immune thing called HSP when he was 7, it was horrible seeing him ill for months.

Goodness that's really interesting about your private FB group and how friends react. It is very weird how other people react when you are vulnerable. I love that you have found a sense of humor through it though. It's been a hell of a roller coaster for you.

Maiziemonkey Sun 16-Feb-14 20:11:36

Hi I have been lurking for a few days because my prob is not a back one but it does result in back pain. I had spd with my first pg and after when he was about 6 months i still had hip pain so they did scans and found a slight hip dyslasia. I didnt get the surgery done because i was still into my career (chef) and it didnt fit into my plan- things got better and I had a second child and more spd, alot worse this time but never had to use crutches thankfully. Things improved slowly again and i saw a chiro as well as the nhs physio but when i went back to work i had a bad flare up and it didnt really "go back", just stayed achey. I had been taking alot of codeine, paracetamol and ibuprofen in the months before it flared up but only taking them on and off when it was bad.

Over christmas time it settled into a chronic pattern and the doc (not my usual one) took the codeine down to just 500/8's when i had been used to taking about 30-50 codeine at a time (with either paracetamol, diclofenac or both)and sometimes still getting some pain. I saw my usual doc again after xmas and he put me on amytryptyline (i take 50g/night) and gave me a small prescription of the codeine but stressed that i had to bring it down or if possible come off it all together. he also gave me diclofenac and omeprazole to protect my stomach. I am now waiting for the op to fix my hip- it will be about 4 months but i will prob have to wait til june because i am currently going to uni to retrain in Psychology- and boy am i glad i am now because the whole cosmos is deffo teling me not to be a chef any more. I had foot issues too- plantar fasciitis but got orthotics through nhs and it has gone away since i was signed off work in december. Sorry for the massive post but it has been a rather drawn out path to now.

I dont ever get the sciatica-type pain you guys mention alot, and it doesnt stop me moving, it just hurts while i am. I feel my pain in my low, low back as a dull ache and feels like i have a heavy weight attached to my coccyx , pulling down. I seem to get worse pain on my period ?? I used to get little achey pains through my muscles in my bum and thigh but the amytryptyline has seen them off. The side effects of that wore off quite quickly but lately I am getting super-vivid dreams- sometimes good of flying etc but other a bit disturbing. My little boy is 4 now and has ASD, we found out when i was 7mnths pg with his sister and my spd had just ramped up so I didnt really take it in until a lot later. He has a staement underway and we arehoping it'll be finished very soon so he will go to a resource base school in sept(not special school but have extra support). He doesn't talk much but it is coming along and I think Robyn will help him as she is strting to talk now- she is 20mnths.

I felt a bit of a fraud to post here but you all seem a great bunch and so much of what you say i recognise- hot water bottles, the drugs (i'm rattling), the mental arithmetic to work out what you can do without going over the top and ending up in bed. This week has actually been lowest pain for ages but it because I had gastroenteritis and a uti and so spent a butt-load more time lying down. I can feel the ache coming back last couple days so am gonna have a lie down couple times a day now. please excuse mahoosive post again and nice to meet you all <hands round cake>

Matildathecat Sun 16-Feb-14 20:34:58

Yes, illness and disaster really do sort the men from the boys in terms of friends. I worked at the same unit for 25 years and had many friends there. Only one has stayed in touch ( more than that, actually. She's been great). Others texted once or twice did the, 'oh we must get together' thing then nothing. I think for some of them they left it so long it just got embarrassing for them.

On the other hand there are some people that I didn't class as especially good friends who have shown real friendship and solidarity.

Others, close friends have almost literally saved me from going under. They have been there for me every step of the way. Amazing people.

goodness, I noticed you were thinking of dropping your amytriptiline. Can I say I felt just like you and really didn't want to take it. However, that's a tiny dose and it works. If you stop your nerve pain might increase, you will then need more opiate and that isn't as good for nerve pain. As an antidepressant you would be on approx 150mgs. So you see, 25 mgs is not a therapeutic dose for depression anyway.

lost I want a weekly therapist. Trouble with my sessions is that they are spread out and I kind of feel I need to show I am making progress so I'm kind of faking it there, too. I'm so used to saying it could be worse etc I never get to say just how shit it feels to be in too much pain to get up for a wee in the night, to need a wheelchair at the airport, to have reduced pelvic sensation blah, blah. I have a legal case now in action and am sick to my stomach with fear of having to meet or even discuss the person who did this to me. I can't even say his name. The very thought off him makes me shake with anxiety. That's not like me. I guess this is just my tipping point. We all have one.

Enough. I've actually had quite a nice day. Hope you all have, too.xx

PavlovtheCat Sun 16-Feb-14 20:42:34

maizie <stuffs face with cake, talks with mouthful> you are welcome and thanks! <passes around the 'pack' of stuff to all those new to thread who don't have one>.

This bunch of people are fab. I can't imagine where I would be without them.

some of the posts recently, completely resonate with me. the putting on a brave face, smiling, pretending it's all ok, when in fact you just want to say 'it's not fucking ok! it's not! It sucks, it's not fair, it should NOT be this way. I am not meant to be like this and you Do Not get it, as otherwise you would not be telling me how well i look, when the reason I am this skinny is because my drugs stop me eating. I am walking straight but that does not mean I am not in pain, or in a bit of pain sometimes. Every fucking step hurts, sitting hurts, standing hurts, it always fucking hurts. And no I don't know what exactly is wrong. And just because I am smiling it does not mean it's all better'. I am also fed up with feeling like I have to explain myself, why I can go to a concert, but can't sit at my desk, why I can dance and have fun, but there is a payback with that. Why sometimes I walk ok and sometimes I can't and that can change within hours. My friends mostly get it, some of them have back problems to a greater (one) or lesser (the rest but of a kind) degree and they understand. Though I then wonder if I shout louder than they do and maybe they feel as bad as I do. So I stop going on about it. At work, I think my boss doesn't even want to know, he asks and regrets it when I am honest about. but I think well dont fucking ask if you want me to say it's ok, because it's not, and I won't lie. DH thinks I am too honest and it might cost me my job, he thinks I should hold more back. But, i just can't.

And yes to feeling like I am a moaner, all the time. I don't want to talk about it any more with my friends and colleagues, as it feels like it's all I ever think about, talk about. Back pain, it has consumed me and it has become my identity. It has become what defines me. Pavlov the person with a bad back. Not Pavlov the bodyboarder, kayaker, the festival goer, the one always out with the children doing active stuff, Pavlov the mother, the lover. No. I am Pavlov the one with the bad back.

Which is why you are all so fucking great. As you all get it. You don't tell me to stop going on about you might think it you all understand that I CAN go to a gig, and enjoy myself and dance, as my back does not stop me from doing those things, but that it comes with a price, and you know that price and I don't have to explain why I can do one thing then be in bed for days afterward. You know what it's like to take so many drugs you can't be sure if you appear 'normal' to others.

And you know what. I feel quite tearful now blush

Matildathecat Sun 16-Feb-14 20:47:33

Hi maizie, sorry! cross posted. You are very welcome. I actually was born with quite bad hip dysplasia. I had plasters, traction and eventually surgery. I really, really don't think these things are a coincidence. If you look up thread a bit you will see my recent post on a chiro appt. our bodies are essentially wonky and as the song says, the hip bones connected to the back bone or whatever. Doctors are remarkably tunnel visioned, they only ever focus on one tiny portion of the body instead of looking at the whole person.

You sound as if you've had a lot of pain and not a lot of answers. If you are studying psychology you might find a Pain Management course helpful. It's not for everyone but I found it enormously helpful.

Thanks for the cake. anyone for a wine grin

LostInWales Sun 16-Feb-14 20:53:03

Holy crap Pavlov, yes, that. Exactly that. <NOT tearful at all, NO>

PavlovtheCat Sun 16-Feb-14 20:55:16

goodness re amytriptiline. Agree with matilda I am only on 10mg of Nortriptyline which is similar to amytriptyline (i never get it right, and spell it differently each time!), so 10mg of mine is about the same as 25mg of yours. I didn't really think it would do much, but it has helped so much with my leg pain. I don't think it has done too much for my mood, but if it did, no bad thing grin, but, I missed several doses this week due to wanting to drink some beer, and I am really feeling it today, my nerve pain has increased a lot today, which is likely in part due to my increased pain generally, but I think the reason i was feeling my pain largely in my back not legs is due to the nerveblocking drugs, and the stopping it has increased the leg pain too. It's probably the one I would suggest reducing later rather than sooner if you are managing the side effects ok.

Matildathecat Sun 16-Feb-14 20:59:10

pavlov, now cross posted you. Seems like I've triggered quite a few of us on here today. Hope that in some way it helps that we all have these very difficult emotions. I so get the bit about being defined as 'Matilda with the bad back'. bad back? Please? It's a bit more than that! I'd prefer another reference point actually.

Grin and bear it...someone came up with that one.

Yes. I'm glad I started this thread. It's fun, we laugh but sometimes a f*ing good misery fest is needed. Chronic pain does grind you down. We all need outlets to release the pressure. It might be music, dancing, shopping or anything. It might cost you in terms of deferred pain, but only you can decide if it's worth it. We do these calculations all day, every day.

And yes, do tell it as it is to your boss. It's his job to listen to you.

Maiziemonkey Sun 16-Feb-14 20:59:47

Totally understand the worrying about moaning thing pavlov but then you also worry you arent being honest withem too, bollixed either way! I have a small circle of friends but all are quite close so they have been really understanding. I have just studied a bit of health psychology in our last module matilda which did make me understand it a bit better. although the irony of learning about pain while being in pain was not lost on me. But psychology is already a bit ironic because you are trying to learn about brains by using another brain! crackpots! My GP said if it doesnt improve in another 2 weeks he will refer me to a pain management clinic. It has been alot better while i've been ill so who knows it might come back lower level than before. I have been going to pilates- helps alot

PavlovtheCat Sun 16-Feb-14 21:03:34

losty <passes a hanky> it's clean, I have my own one <blows nose>

PavlovtheCat Sun 16-Feb-14 21:09:52

One of my close friends, she has had back problems for, well for all her life, but it was always put down to xyz, never had any correct diagnosis. She has one leg markedly longer than the other, curvature of the spine at her shoulder level, but nothing was ever done about it. She has had pain for years and it has messed her life up. She was told that it was actually all related to her hip, which she found out has a problem with (can't remember what). Anyway, she spent years with this before, aged 40, a different doctor suggested she had an MRI (yep, that's right, no MRI in all that time). She has Spina Bifida shock, so, has obviously always had that! Not diagnosed til 40 years old! She got so feb up with being fobbed off as it not being so bad that she self medicated with drugs when younger, then alcohol and stopped going to medical professionals until she met the partner she is with now and he encouraged her to explore it again and be pushy. Even then it took 3 years of fighting and everyone thinking it was in her head/due to alcohol use and not looking after herself.

Matildathecat Sun 16-Feb-14 21:17:08

Tbh it wasn't until I had the standing X-ray just last week that the root of all my troubles became apparent. One leg longer than the other ( ? Due to hip dysplasia), spine therefore pushed into abnormal curve and disc squashed out.

Problem is, there isn't much to be done about it. I will be looking at orthotics and maybe chiropractor.

Thing is, I'm just sick of doctors, treatment and the whole thing.

pavlov, what has happened to your friend? Is she getting any help?

livelablove Sun 16-Feb-14 21:17:13

Hi maisie welcome, sounds like you need the pain transfer device for your Dr. Its stupid to suggest you reduce your pain killers before your op. Its not like your pain is going to reduce. Unless you can be given an alternative medication of course. I know codeine is bad for you and can be addictive, but why not wait until after the op, then reduce? did you read that Pavlov has been taking nortriptaline instead of amytriptaline and I think it has less side effects, might be worth looking into.
I work in a kitchen, mostly reheating I am sorry to say and washing up. It is hard on your back. But the only advantage is not having to sit a lot. Luckily my job is only pt so that makes it much easier.
<eats yummy cake cake>

GoodnessKnows Sun 16-Feb-14 21:19:34

Can these drugs account for the fact that I can't retain any info I read in even HALF of ONE person's comment - let alone read a few n then reply. Actually, I never could! Haha
But whoever game the amatriptaline advice (a couple of you - and I can't spell it either) thank you! I'll leave it for now. Just don't completely trust gp is interested in anything but how much is prescribed. It's odd. Not right kinda odd. Prefer the pain team approach.
In those ways, it's easier being a l'hopital. Gd forbid I ever need to do that malarkey again! Gd forbid gd forbid

GoodnessKnows Sun 16-Feb-14 21:20:18

I neeeeeeed cake. Slimming world cheese cake. It's late but I want some NOW

PavlovtheCat Sun 16-Feb-14 21:22:09

matilda She has been paying privately for chiro and sports type massage, she has hydrotherapy, acupuncture on NHS and some physio and she has been given pregabalin. But, there is no op that is available that will help.

livelablove Sun 16-Feb-14 21:23:38

slimming world cheese cake? Does that count as cake?

PavlovtheCat Sun 16-Feb-14 21:25:08

goodness best that I don't tell you that I have just had thorntons chocolate parcles and some peppermint chocolate balls for my dinner? I found them in a bag, from Santa as stocking fillers (he bought too much to fit in the stocking) and I was not hungry, so they did the trick!

LostInWales Sun 16-Feb-14 21:26:22

Ta Pavlov <has a big blow> better now grin. You don't know how bloody lovely (and crap obviously) it is to see someone write down exactly what you are trying to say. Plus I have lost about 4 stone (I'm still not slim but I do look bloody lovely compared to how I did) but I am sick of people wanting to know my secret and being a bit jealous of me when it's because I am a bit poorly and a lot miserable and taking bloody awful medicine which kills my appetite and makes me feel sick. I have rheumatology on Tuesday and I never in my life thought I would be going to a doctors to put my case for a small dose of chemotherapy! Actually that makes me grin, it is all so bloody ridiculous isn't it? So anyway, to put it better, YES that is just it, and it is amazing to have people who understand to share it with.

You have made me think Matilda but in a good way and dear god I could shoot the next person who says I have a 'bad back'. My dad had a bad back last year and keeps telling me that Voltarol pain gel is the way to go. I don't think he really gets it. "We do these calculations all day, every day." That is perfect, it really is. I coach and U8's football team and that is the only reason I haven't applied for a blue badge. I plan my whole day around evening training once a week, extra drugs, coffee, no moving in the afternoon and food prepared for tea after well in advance. I love my little footballers so the pain is something I am prepared to 'take' as a pay off for the happiness they bring but if people saw me with them and then saw a blue badge they would be straight on to the bastards at the daily fail. You lot understand the equations we do to LIVE not just endure. I'm going to stop talking now, I've had a lot of extra tramadol this weekend and a glass of wine, I am getting a bit over excited and waffly blush. I would totally recommend paying someone to brain dump on as well, it's not free but I have taken it into the family budget as an essential because otherwise I would just go to bed and cry.

Hello as well lots of you are newish and I don't know you yet but after the sedation on Fri and extra tramadol to get through to the injections working I am a big woolly head and can't quite manage acquiring new data, give me a couple of days OK?

LostInWales Sun 16-Feb-14 21:27:15

^^ that is in response to something about 20 mins ago but I am woolly and slow!

LostInWales Sun 16-Feb-14 21:37:19

<slots professional head on> Actually spotting spina biffida (I can't remember how to spell it, see 'tramadol and alcohol') later in life isn't that unusual. There are a few people who don't have it badly enough for it to be an obvious problem in childhood and maybe have a slightly furrier lower back (although a lot of people just have furry lower backs too, nothing unusual in that itself). Sometimes it shows when an adult has an abdominal x-ray because of tummy pain and it turns out there is a mild abnormality of the spine which makes an awful lot of other things suddenly make sense. Not that that excuses Dr's who ignored your friends pain and didn't spot it, that's a bit crap!

PavlovtheCat Sun 16-Feb-14 21:45:27

losty I can see that, in low symptom cases, but honestly, my friend's symtoms of back problems, although might not have pointed to spina bifida (i can't spell it either!) has been so significant, you can see the curve of her spine, one shoulder blade is higher than the other, and she used to dance for a laugh simply by standing on one leg straight then the other, that I cannot believe they let her go for so long without investigations. i mean, yes, actually I can. I never really quite understood fully what was wrong, I thought she had her diagnosis, nothing could be done, but she had given up as she was so sick of being fobbed off (like we all have been at various points), but her issues were so clear for a medical professional to see enough to say 'shall we go do some checks on a few things?'

PavlovtheCat Sun 16-Feb-14 21:46:28

and, oddly, she doesn't have a furry back! She has had tummy pain in her lifetime though, it was diagnosed as endometriosis. Maybe it was not that (or just that) after all?

GoodnessKnows Sun 16-Feb-14 21:50:36

My mum took me at about 8 yrs old, to the doc. GP have my back lump a name and called it 'common and harmless'.
My mum took me to the British School of Osteopathy when I was 14 as I said it aches a bit (trying to get out of games, probably). They said it was 'hairs on the bone'. Hairs on the bone?!? Even at 14 years old, I questioned why it was a bit hard. They drew a pencil sketch of the hairs standing upright under the skin - making it hard. Erm (scratches chin while shaking head and looking toward ceiling).
Turns out, at 41, it was neither common, harmless or... hairs on the fucking bone. Lol-ish!

LostInWales Sun 16-Feb-14 21:53:34

No I agree, for her it was utterly crap! I really don't think medics want to hear people properly a lot of the time. Plus as Matilda points out, everything is linked.

LostInWales Sun 16-Feb-14 21:55:20

Seriously Goodness shock. That is just astonishing, well no that's just old school patronising medicine tbh. Lol-ish indeed!

livelablove Sun 16-Feb-14 21:56:14

Wow goodness so you have always had this lump, and it was missed before. I didn't realise it had been there so long.

PavlovtheCat Sun 16-Feb-14 21:56:56

right, got to go to bed. I not only have to brace myself for work, but I am properly snowed under All Day until 2pm. FFS. I am in quite a lot of pain today. How many more years til I am 70 and can retire? grin

PavlovtheCat Sun 16-Feb-14 21:57:58

goodness wow! that is shocking, so much is missed!

livelablove Sun 16-Feb-14 22:02:11

Goodnight Pavlov, hope you feel a bit better tomorrow, and get through work.

GoodnessKnows Sun 16-Feb-14 22:18:53

But it didn't really hurt. I do feel for those who've been suffering and for whom it's been missed/ misdiagnosed. Thankfully, mine was recently (and incidentally) found and kicked the hell out of here. I hope theirs is, too.

I see a gap out there. It's huge and the scariest, most miserable hole pf a place for anyone to be: knowing there's something wrong. Feeling in pain but not knowing why. Having to wait but not yet being td whether it's the Big C. Who is there to counsel these people? These people whose club I was in just 6 weeks ago?

Maiziemonkey Sun 16-Feb-14 23:04:49

It's true about things being missed- they only spotted my hip dysplasia because the physio took my x-ray to a friend of hers working in st thomas, the person who originally assessed it had written "normal", then they did mri and pet scan and they found it. It would probably be unfair to say they should have spotted it when i was a baby because it was slight and that was bleddy yrs ago. That is awful about your friend with spina bifida pavlov - i had no idea it could be missed. Wrt Amytryptyline (maybe we should call it Amy- cool drug slang) - the side effects wore off quickly once i had titrated up to 50, it just took a while to do it and was when i had to do some essays for uni- bad timing. I think maybe GP's are more funny about codeine, tramadol and diazapam because it's inner london boroughs, my mum suggested i ask for diazepam just for the night time to relax muscles as i have felt a slight spasm feeling if i do too much, kinda creeps up my back, ( she has a long history of major probs with her back- slipped disk, but other stuff too, so knows about meds options) and the dr said he would be struck off! Hope you all have a good night's sleep grin

GoodnessKnows Sun 16-Feb-14 23:20:51

My bum hurts.
Thought I'd share that with y'all, now that we've gotten to know each other a bit better ;)

Liking the cool drug slang (that helps to avoid the spellos)!

I've been lazy as hell today. Left room only for brief visits to my friend Fridge. Did venture down when invited by DCs (6 and 3) to play Duck, Duck, Goose. I still don't know which I looked more like as I attempted a hysterical-looking 'run'. Duck or goose? Lol

livelablove Sun 16-Feb-14 23:42:27

The problem is we have educated ourselves about drugs, but sometimes it doesn't look too good to be asking for strong drugs by name (or even worse nickname!). But don't give up if you are still in pain, go back and pester, try a different doctor, ask to be referred to a pain clinic, its not fair for you to struggle on in pain just because some people abuse these drugs. Also explain how it is affecting you and important things you are not able to do rather than talk about pain only.

LostInWales Mon 17-Feb-14 09:16:28

I had to be really pushed to take tramadol (thank you new young GP and Pavlov) because I thought it would make me a scary drug addict. I'm a bit scared of trying to stop them one day but as that doesn't look to be happening any time soon, I won't think about it.

My bum hurts too Goodness, well my right bum anyway. What are you up to today, I've got lost in your progress a bit, are you up and about with the help of masses of drugs or are you mostly supine with a bit of hard core physio when you can manage?

I'm going to order a Tesco delivery, try and do a bit of homework (doing an OU degree in IT and Maths, just SO easy on tramadol wink) they ship in another top up pain relief and lie on the sofa. I'm supposed to be driving to the hospital and back tomorrow for rhumatology and I'm not sure how that is going to work right now!

GoodnessKnows Mon 17-Feb-14 09:22:07

Lost, today I'm off to see my Nunny Doctor (combo of tumour near nunny nerves & childbirth tearing them).
This time is set to be rather exciting.
I'm taking The Machine.
She recommend I buy it. So I have. Don't know which I will find more strange. Her fingers or my new, erm, metal proves.

GoodnessKnows Mon 17-Feb-14 09:25:09

I am quite mobile BUT get as excited as a toddler at a tea party just to be out n about - then come home and literally feel like a lead weight, fall asleep on bed and can not move for rest of the day with exhaustion. I'm a brave chick. I don't even take my OxyNorm with for the ride.

I'm getting a bit 'relaxed'. Not taking meds on the dot of the hour (or next hour). Didn't do ANY Physio yesterday.
Think there's a ickle bit of depression lurking. Probably always has been.

LostInWales Mon 17-Feb-14 10:08:23

I think you just have to relax into that, accept that this is a situation that is going to exhaust you mentally as well as physically but that it is OK to feel like that, it's a normal reaction and you are doing the best for yourself that you can. Things will look up soon, everything is slowly getting better. Does that make sense? My DS2 has been very down, he has had a very hard 12 months which included one of his good friends dying, last week I took him out in the car (good older child talking zone) and told him it was fine to be down, it was normal to be down in his situation and that we would all stick together and it was going to be ok. I think giving him permission to be sad with knocked confidence really helped, for the first time in an age this weekend he took his football and went to look for people to play with in the village. I hope that makes sense. Accept it for what it is, don't worry about it just tell yourself it will be better and it is easier. Then get down the doctors for some AD's if you want to as well, they are bloody marvellous things and will keep you together until you are well enough to mend yourself (your amitriptaline doesn't count, it is too low a dose really). From the sound of it you were working yourself very hard before all this happened anyway so your reserves were probably getting a bit low anyway.

Have fun with the nunny doctor, my friend had a 'device' once to help down there and she said it clicked when she squeezed it right. Sounded hilarious grin.

Matildathecat Mon 17-Feb-14 10:27:18

Arghhhh! Just lost longish post. sad

goodness good luck with the appointment do hope your Machine does as advertised. grin. Re feeling low think that's both normal and inevitable. I certainly did. I wrote before about my little notebook I think. Anyway, I made lists of nice things to do the roped in friends to put the things in our diaries so I had things to look foward to or work towards. It really helped. Some of it was pitifully normal like go for coffee.

I tried to exercise where poss and maintain routine and normality. Also to allow the sadness because frankly it is/ was pretty rubbish and depressing. Counselling good. Might your insurance cover that at some point?

lost re Blue Badge, I have one as does pavlov. Useful things and for me not so hard to get because we are disabled. I use the local (large) park a lot and sometimes park my car next to David Weir the Olympic Gold medalist. I feel a bit 'under disabled' then grin though he is of course a million times fitter than me! Just different circumstances. Having a BB might enable you to keep contributing to the football training for longer...

If you want any info on the process let me know.

Hoe you all have a good day. I'm being lazy. I guess if it's half term for anyone here that's not an option smile. I kind of miss those days but not so much wink

Matildathecat Mon 17-Feb-14 10:31:10

Sorry should have said * paralympian*, David Weir is the wheelchair racer in case anyone wonders. Otherwise that post doesn't make a lot of sense. Duhhh!

LostInWales Mon 17-Feb-14 10:45:33

I know who he is, he is awesome. I don't know about a Blue Badge you see, some days I can't walk hardly at all and it would be wonderful but it's almost like admitting I'm broken, I don't know, there's a psychological barrier and then there's the stupid judgeyness from people who don't know like we do wink. I hate the world disabled. We need to find a better one. Although how I think I am able bodied after I drove DS3 the 500m up to school and am sat here trying to ignore shooting pains in my leg and order Tesco online because I can't go to the shop, I have no idea grin.

Matildathecat Mon 17-Feb-14 10:50:05

Oh yes, I totally know what you mean. I refused to use the bloody thing at first! Such a head fuck ( excuse the language it's just true).

It does help though and nearly everyone has good days or rather less bad days and bad days. Some days leaving the house is a miracle.

LostInWales Mon 17-Feb-14 11:08:31

Do you ever get over the feeling that you are just making A Fuss, that other people just suck it up and are fine and you should not be malingering on he sofa? (this is from someone who has seen her scans and x-rays too, I know what they show I just can't help feel I should stop being so bloody wan!) Urgh, I'll inbox you about getting the bloody thing!

GoodnessKnows Mon 17-Feb-14 11:22:45

Matilda, I'm hoping that Machine does more than advertised. Lol
Only kidding. Now that WOULD be embarrassing!

Quick question: they said to wear hospital socks for 6 weeks post op. Do I really have to?

LostInWales Mon 17-Feb-14 11:30:34

I know they are grim but I would rather that than having a blood clot which could go for a wander and make even more trouble!

Maiziemonkey Mon 17-Feb-14 12:53:43

oh yes Goodness those socks are so sexy! not! but they are worth wearing to avoid clots. I had them on for weeks at the end of my last pregnancy. Some even advocate them for anyone staying in bed alot due to back pain etc.

like should I say to my doc " come on doc the Amy's not enough, slip me some dizzy mate?" - probably not the best tack- you are right not to sound TOO knowledgeable sometimes but i usually just quote my mum as she has extensive history, back issues up the wazoo etc. She also has one leg a bit shorter than the other- it obvs causes problems.

lost so sorry to hear about your son, how sad for him to lose a friend so young. I would find it terrible now as an adult. My afore-mentioned mum also has never gotten a blue badge even with all her daughters nagging her to- she says she would feel a fraud but she has limited walking and doesn't do long distances of walking without it giving her alot of pain.

I think people with ongoing stuff get so used to coping that it becomes normal. Her epic problems have also made me feel like i should't complain as it is nothing compared to hers. Saying that she has been a big help and support over the phone because she does understand all the issues we are going through- just hers are more major. But then i am only 37 so it is relative i guess.

I am rather achey today but it is totally my fault for picking up my little girl too much this am- it's really hard to keep saying no sometimes. Massive spoon-management fail i'm afraid.

goodness sorry to hear you are feeling down, it does gring one down and this time of year doesnt help as it seems to match how you are feeling. Hope you find something today to make you feel good. It's something diff for everyone but for me i will put on comedy shows sometimes. Exercise used to be a big way to keep me on the right keel emotionally but that is no good right now apart from swimming and pilates. i used to in-line skate but that is out now really, might fall over!

GoodnessKnows Mon 17-Feb-14 17:18:38

I have had a great day: physio appointment meant dad took me out in his car. Managed to get him to stop on way home for fruit, a peel in fave clothes shop next to grocer and doctor's, mini Tesco and pharmacy -all in a row next to each other. Am now paying for it in fatigue. Came home and did nunny machine and ALL usual Physio exercises. I'm an idiot. Ate. Now in front of the depressing breaking bad that I now have to finish watching seeing as I've made it to Season 5 -wasting hours of my life I'll never get back--.
Pharmacy told me that I vs. get hideous stockings in prescription. So, went back into doctor and asked receptionist roads some as (drum roll) my 12th item on my list of repeat prescription meds.

LostInWales Mon 17-Feb-14 17:53:12

Yay, hideous stocking win grin. Glad you have had a good day though, sometimes you just have to enjoy yourself and just take the pain and tiredness to pay for it. Sucks but there you go. (Sorry, I am in a grump, there must be a nicer way of putting that). Is it worth getting started on Breaking Bad then, we were given the boxed set but I was so horrified by the violence in the first episode I had to stop watching. I am a wuss.

Just back from rheumatology clinic with the awesome news that there is no way of making my back better just ways of 'managing' the condition, I don't know why I was optimistic enough to think there would be really, just thought maybe reducing the inflammation would help somehow? Anyway, I get to keep taking the foul medicine because it keeps the associated irritable bowel disease (the glamour) in check and has stopped me being so tired and maybe possibly will start helping with the hands and feet and wrists and ankles. For the back and the SI joints there is only pain management. Happy happy joy. I may be feeling a tiny bit sorry for myself, somehow I hoped there was a magic wand that would make it all go away. Bollocks. Cwtch up Matilda we can grow crunchy and old together.

lost, did they mention anti tnf? maybe they reckon too much damage already done? that's shittier than shit but probably what I am going to hear on next appointmentthanks wine hello and welcome to the newbies, goodness you are really doing great don't underestimate it.

PavlovtheCat Mon 17-Feb-14 18:50:25

losty I Always feel a fraud, and that perhaps it's not so bad and that I just don't cope with it as well as others. I remember though when I first had sciatica, but no back pain, before my back problem became 'problematic' just went every few months for a couple of weeks, I remember thinking then, that it's just living pains, that everyone must have pain of some kind or another and that I was Making a Fuss. I didn't go to hospital when I couldn't feel my leg at all, as I felt like I was making a fuss. And I don't see myself as disabled, although, at the moment I am, as I don't want to be. I have a blue badge. It is marvelous. It has meant that sometimes, I will pop into town as I don't have to park miles away. It means I can go to the Eden project or other places that have long walks to the entrance, with the children, as I can park in the spaces closest, things I had started to avoid because it as all too much to get there with pain. I can sometimes take myself to work without relying on DH as I can park at work (like today, children in half term, didn't need to drag them all out to take me to work as I can't use the bus easily, it jolts and then I have to walk miles) It means sometimes I can do a little bit of shopping.

But, I still feel a fraud, and if for example there is only one space available, I won't use it, as there may be someone who is 'actually' disabled who needs it. On the days when I walk ok, I just don't use this spaces at all. But, actually by the time I have done the shopping, I regret that as then I have to drag myself to the car!

It is ok to do normal things with a blue badge, just because you are working hard to have a life it does not mean you don't need, or will benefit hugely from the badge. You can also apply to your local council for free bus pass if you qualify for the badge, so for those who use public transport, it is worth applying for a blue badge even if you can't drive or don't usually drive.

PavlovtheCat Mon 17-Feb-14 18:52:10

happy happy joy that's Ren and Stimpy!!

GoodnessKnows Mon 17-Feb-14 19:35:39

Aaaaagh
Brain exploding. Was hiking to respond to parking fraud bits n now my mind has diverted to 'worth starting breaking bad' stuff.
Well, your DH will prob get hooked on it forcing him (and u) to buy the rest. At this point, consider subscribing to Netflix who have all series on there. I think that netflix also have a one month free thingy. Not sure about any tie ins with that so, be prepared to become enmeshed in violent and dark world of drugs n swearing (swearing may b nothing to do with BB - but all of my own making as result of my own recent experiences).
Anyway, and I'll get roasted for this, see my recent BB AIBU post I think it's been a hugely dark n negative waste of time BUT it's wasted a huge amount of time that needed continuous distraction (the op). Pros n cons.

I sent form for blue badge off before op. At that stage I didn't have too much pain at all but on occasion was reduced to tears of frustration held back only because had kids in car who were almost always late for their wotnot classes because I couldn't face shlepping them all the way to the entrance from the car. Think I just didn't realise how hard it was n how much I was struggling from years n years of 'achey hip' (since diagnosed as chronic nerve pain).
There you go.
So now, if I need the space, I'll use it. If there's another one at manageable distance, i will use it. But I don't LOOK like I need it which is embarrassing if I care to consider what people might be thinking (less so of late). Then again, I don't look like I need to go to slimming world, either (keep going cos I'm a pig who can put a stone on in two weeks).
There you go. More drivel from me.
I also feel a fraud on here cps I don't think I've got it bad compared to those who have ongoing stuff n I hope (like hell) not to.

LostInWales Mon 17-Feb-14 19:57:03

"hugely dark n negative waste of time" lovely, that is a perfect answer, if I am going to waste my time I will do it with something lovely and wafty grin.

Denial, I don't know about the anti-tnf. I cocked up with my appointments (this is my third appointment in two weeks, I'm a bit mixed up!) and only realised I was supposed to be at an appointment 45 minutes away 10 minutes before the appointment, they were awesome and said come anyway we will juggle things and see you when you get here, so I jumped <carefully wink> in the car, pegged it there in the pouring rain and wasn't organised with a list like I planned to be. Plus there was the whole IBD issue which threw me, so when they said they weren't expecting the sulfasalazine to help with my spine and SI joints, there would be no cure just keeping things as good as possible I went blank. Bugger bugger bugger bum. The damage to my spine is visible on x-ray for the whole of it though so there is no mending that and no injection pain relief for that many different spots either. Fuck. Sorry, I am a self obsessed muddle head his evening.

GoodnessKnows Mon 17-Feb-14 19:59:33

Big hugs from one muddle-head to another.
Can't count the things I've bodged up including having arranged for my parents to have DCs and DH to take time off to look after them all at the same time.

LostInWales Mon 17-Feb-14 20:12:11

Anyway, ignore my ramblings. It's all good, that is a known so I can get to helping myself with good pain relief, physio and injections, it's a focus. The other bits and bobs (peripheral joints as the radiologist called them on the report when I think she had got bored of naming them all grin) will probably eventually be helped by the Sulfasalazine and if not I shall start making a list for the next appointment in my phone so I am not caught out again.

I love that you doubled up on babysitters, getting one at any set time seems like a miracle!

Matildathecat Mon 17-Feb-14 20:14:20

Well, I was pottering around this morning before getting really sore so took my slow release tramadol then rested on my bed to allow it to kick in. Next thing I knew I'd fallen into a drug induced coma fast asleep and felt utterly stoned when I woke up and the thought my planned swim a poor idea so had a bath and watched Call the Midwife instead. Oh dear, another day wasted (!!!!). It's annoying, though cos sometimes I'm fine on it and it's good then other times it knocks me out hmm anyone else had that?

Yes, yes to am I making a fuss. In fact if I have even a few hours feeling okish I think I must be imagining the bad times. That's after two solid years of severe pain! Slow learner huh?

I agree about looking perfectly ok yet needing disabled facilities. It's weird. And I insist on hair, bit of slap and halfway decent clothes so tend to look rather well. All very difficult.

goodness wow busy day. You'll need a quiet one tomorrow.

Steady, ladies, steady.

LostInWales Mon 17-Feb-14 20:30:49

I think I'm making a massive fuss even though I have seen with my very own eyes the bone scan I had, I seem to forget it the minute it's not in front of me and think I'm making everything up! Deffo good call not going swimming when you were feeling utterly stoned though grin. My best ever thing was finally getting a new up to date TV this Christmas with a sky HD box. I can search for things I like and everything. If you like Call the Midwife did you see Bletchley Circle when it was on, that was brilliant.

PavlovtheCat Mon 17-Feb-14 20:42:10

matilda that's the problem isn't it, we are expected to look like we have disabling pain. And not look like we might enjoy any aspect of life if we are to get any tangible support from it such as blue badge. No, if we are to utilise benefits for us, such as a disabled loo, parking spaces, having a till opened for us (that happened in M&S, forgot to mention that, when I had my crutch and a Really Bad Day, and there was a queue on all the other tills), then we must be visibly, undeniably, and badly suffering more than others, in order to be deemed worthy. Well, fuck those who think we should, i try to add a bit of slap too, do my hair nice, hide that I am on shit tons of painkillers, smile.

I can't sit. It's painful. The nortriptyline is clearly dampening it down, as I have numb patches on foot, and occasionally leg sort of stops working/feeling for a few seconds, but the pain is not as bad as it possibly should be! But sitting is. And, as I almost found out, there is a tiny section of bending/leaning where if I do it, I drop what I am holding due to sudden pain. That position is when I holding a cup of coffee and that tiny bend/move to put it on an office table. I almost dropped a whole coffee onto someone's paperwork as I gave them a cup of coffee as my back gave way! Oops!

Matildathecat Mon 17-Feb-14 20:47:16

Oh, and called the ATOS dept responsible for my nhs ill health retirement application today to find out what's going on. It's been a few months now. So, nice lady in charge of my case and she actually seems very familiar with my case. So, she says the assessing doctor is minded to approve but needs further report from my London hosp pain clinic. Trouble is the consultant who assessed me has left ( they have a copy of his letter summarising my meeting with him). The new consultant has ignored their request and after numerous calls the ATOS lady has been told they won't provide a report. WTAF?! I'm practically a colleague. So I'm asked if there is anyone else I can ask. I have given the details of my nice psychologist. I know she would be supportive so hope like mad they ask her.

Sorry, that's very boring but sooo frustrating. Why does it all have to be so hard? Isn't life like this bad enough. Methinks the pain consultant who won't do reports needs a visit from the Mumsnet Pain Device. sad

Matildathecat Mon 17-Feb-14 20:52:10

pavlov can you increase the dose? I know with amytriptiline I had to increase the dose as my side effects decreased. Sorry it's so hard. Not being able to sit is such a bloody drag. I actually can't bear to think that I will never sit down comfortably for the rest of my life.

PavlovtheCat Mon 17-Feb-14 20:59:11

He is minded to approve - so just bloody approve it then! FFS, if he is minded to approve, it means that from what he has seen from what information he already has that there is enough to make a decision to approve, or else he would be saying 'i'm not sure, need more info'. So, why the fuck doesn't he just put the stamp on it angry i mean, if he is thinking of approving, surely the pain clinic can't give him more info to say 'well, i did think this was appropriate to approve as clearly all the evidence suggests this woman is not fit to work, but, now the pain clinic have said blah blah (which is not going to be anything that conflicts with what has already been proven to be true), then, oh, I have changed my mind?' The only way that would be the case is if they said 'matilda? oh yes, she comes in, skipping rope in hand, positively beaming, and while waiting, skips to pass the time, or runs up and down the corridors to keep fit'. All this bureaucracy drives me nuts.

I am taking a step back from the bloody lot of it. My lot are clearly of the opinion 'well she's had the bloody op, what more does she want?', like my hairdresser, did what she could, but when it didn't work as planned, did not know how to fix it, so left it as it was and ignored the problem. I have no energy, or time to fight anymore. I am either in too much pain to drag myself forward to see medical professionals again, or call them, or I am back at work trying to rebuild some professional standing, or I am being taxi to the children. No-one's listening anyway, so what's the point.

PavlovtheCat Mon 17-Feb-14 21:05:45

matilda x-posts - I expect GP will suggest that, I need to get a repeat prescription so will call him and ask what he thinks, I just don't want to go higher, as the side effects are manageable now, groggy in the mornings and I forget most things before I can write them down at work, I lose track of what I am doing, like, opening Word 3 times when it is something else that needs opening, and looking like this confused at the screen when it's not what I wanted. But I am managing that ok ish, just looking like an airhead and talking to myself a lot as I realise my errors.

It is easier, and the last episode last week has eased enough that I can be at work, but, I know it's going to go again as that flu feeling in my back has not really stopped, just subsided. It feels like it has not fully recovered from the one after Christmas, just kept at bay. Oh I would give anything to have that post-op pain back! When there is no nerve pain and all I can feel is everything 'recovering' grin and that small window when I felt good! I don't even wish for 'back to normal' really now. I can't ever see that happening.

it sucks doesn't it. it's just one poxy disc. messing up my entire life.

GoodnessKnows Mon 17-Feb-14 21:26:07

Here's a grrrrrrrr for Pavlov

LostInWales Mon 17-Feb-14 21:30:19

The whole ATOS thing makes me weep. My fabulous Fil lost a whole leg from above the hip yet every so often they try and change his disability levels back to relatively mobile, as though by magic he grew an entire leg back. It baffles me. Had similar with Dr's not doing letters for a friend too when it would be done and easy and sort everything out. Madness.

I know Pavlov, one bloody disc, I suppose we could just focus on how cool the human body is keeping so much together for so long but it's no help is it when one bit goes wrong and screws everything up. If it's only one disc how come they are hanging back on injections, surely you would be an ideal candidate?

PavlovtheCat Mon 17-Feb-14 21:41:01

losty left hand/right hand etc. pain clinic guy didn't want to do injections without mri results (he didn't even ask the doctor/consultant, like he said he would), then next person I saw was nurse who saw he had said wait til mri results. She took this to mean 'no' and gave me some cock and bull story about not being able to do injection as pain is bilateral and the injection is one side only. If mri comes back they can reconsider blah blah. She didn't respond to 'why don't you do two injections then?' and I know that can be done <you are the proof!>, I don't actually think she really knew the answer as to why so gave me something she thought I might suck up as the truth. and, seeing as it's clear I am never going to get any actual result from my mri other than what my GP can't fully dicipher, they are not going to consider the injection any time soon. I haven't even had the hydrotherapy that I was promised before Christmas, and that the nurse was shock about in my appt a month ago. it's all so fucking slow, no one is responding to my calls anyway, the last call to neuro consultant had his secretary lie to me and tell me she would call me back. That was over two weeks ago. it as been like 10 weeks since my mri. and they haven't lost it, as my GP has the results he just doesn't understand them enough to tell me more than dehydrated disc, another 'bulging disc' at a different level and some other things I don't understand, but possibly not a 'prolapse'.

I think I am going to ask for all my notes and just diagnose myself.

PavlovtheCat Mon 17-Feb-14 21:41:43

that's shocking about your friend and ATOS shock btw!

PavlovtheCat Mon 17-Feb-14 21:46:06

you know what? I am going to be more fucking cheerful. I vow to write 10 posts without swearing, without complaining. About ANYTHING. Not including this post as clearly I failed that in the first sentence. 10 posts! Can I do it?! hell no I can barely talk at all without an expletive coming out of my mouth these days

Matildathecat Mon 17-Feb-14 21:51:29

Ok, I'll kick off with one cheerful post. Just been playing catch with my schtoopid goldendoodle. I throw, he catches. Lovely boy.

Also, family away skiing so I've had marmite on toast for breakfast, lunch and dinner grin. Cheap date, me!

LostInWales Mon 17-Feb-14 21:56:29

I have decided to be fucking cheerful too grin it's the only way forward, especially as I am watching a program about people being 'cured' by the placebo effect and it is making me unreasonably angry! Bastards wink Such a shame you are not on my system as my work and I could accidentally send your report and films on somewhere, not that I would ever to that but it's tempting sometimes. I think you can have up to 4 injections at once, after that you are having trouble with excess local/steroid, I think, it's been a while since I was the one in the lead apron not the one with her bottom on show on the table.

I love fucking swearing, I do it cheerfully as well as grumpily, is that ok?

LostInWales Mon 17-Feb-14 21:59:02

I love goldendoodles, they are just the most cheerful looking dogs, plus I imagine you could ride one in an emergency wink.

PavlovtheCat Mon 17-Feb-14 22:03:36

you are absolutely right losty, I love swearing too, that is perfectly fine, and I may well have to edit my previous post and continue swearing, but happily grin

matilda snuggling with your pooch and eating marmite on toast all day is fab! I skipped brekky, had two bars of chocolate for my lunch blush but made up for it with 3 mexican tortilla stuffed with a ton of refried beans, guacamole, chicken (a little, not keen on it), red peppers, onions, cheese, soured cream, lettuce...lovely!

My cheerful post is: I have both my gorgeous children in bed with me, fast asleep, gently snoring. I can't take them to their own bed, and DH is out (mondays are going out nights for him) and so I am going to curl up with them! I have been looking at them as they sleep. DS still does the clicking of his tongue from when he was breastfed, DD sleeps with her hands in prayer, always has done. They both look so peaceful, and at times like this, life feels good.

LostInWales Mon 17-Feb-14 22:30:10

I've just checked on my three, DS1 would kill me if he knew I still went in every night when he was sleeping and said 'I love you SO much' but I can't sleep without it smile. They are all beautiful and perfect and yes, right now I am happy. Sleep well you lot, in the morning we are going to be positive and get stuff done and lie down when we need to without feeling guilty grin.

livelablove Mon 17-Feb-14 22:47:55

Hi Pavlov I don't think you should feel you have to be cheerful on here, as people said earlier, you can't be constantly moaning at friends and family so you need somewhere to have a moan. But it is good to focus on the things that are good and enjoy them when you can. Just little things like nice food or sleeping babies makes a difference. But moaning and swearing is allowed! I am still finding it difficult to walk a long way, but managed to get all round town today with a few strategic rest stops. I was getting tired on the way back but we stopped to look at back friendly chairs so had a sit down in those. Still haven't decided on one yet.

GoodnessKnows Tue 18-Feb-14 10:35:11

No more forced-cheerfulness, please! I'll not feel I belong any more.
I am The Official a Grouch - with added sense of humour for 'you've just got to laugh moments / days'. Like now, for instance. I'm unashamedly using my 'new machine'. Programme 9. Had to whack it up to 46 whatever they are (Hz?) to feel ANYTHING. Nunny doc thought I'd be around the 20s.

cowmop Tue 18-Feb-14 16:53:37

Bloody hell you lot have got the gift of the gab. I've been out of action for a few days and ended up with 7 pages to catch up on. By the time I catch up I'm too knackered too write and end up back the next day catching up again!
So hi, I've been doing a massive amount of nodding whilst doing my catch up. I feel like a swan most of the time. On the surface people at the school gate, clubs, PTA, shops etc see me smiling (although limping a lot) and carrying on as normal floating around serenely, but under the surface my legs are going like billy-o. Frantically paddling to try and keep afloat, manage the pain, stay upright, fight just to see a doctor and convince myself that actually I just need to stop.
Having said all that I've got too go out now but will be back later/tomorrow to update you with my next installment. Don't have nightmares y'all.

PavlovtheCat Tue 18-Feb-14 20:20:57

ok. I am not entirely sure I can go 10 posts being only cheerful grin but, maybe I will start my posts with a little cheeriness for 10 posts...

So, little Ray of Sunshine is - er - er - grin I managed to get through work, having worked almost a 'normal' day 9am-4:00pm with no lunch. Non-stop, standing for a bit, sitting for too long, standing for a bit, sitting for too long, the lift was out of action for the morning so I started with 6 lots of stairs (is that 6 flights, or 3 flights, never know, anyway a lot), followed by a child protection meeting where I sat til I couldn't take it any more and even my clients said 'oh stand up!' and said to the others around the table, in a protective manner 'she has a very bad back, she had had an operation, sometimes she even has a crutch' aw bless!

Unfortunately, that is probably the end of my Little Ray of Sunshine. As the consequence of that is I am in a LOT of pain. I didn't take painkillers stronger than paracetamol and naproxen as soooo much to do. My workload is probably around 140% on paper, so maybe more than that, added to the fact that I am slower, not hugely, just enough to have no wriggle room. I keep getting these weird mind blanks which I think is related to the nortriptyline? -

I will give you an example. I used the disabled toilet at work, not for any reason other than it was the closest to me. I turned to flush it. It uses a long white cord flush not a button flush. White flush on one side, red emergency cord on the other. I went to flush using the white flush, then looked, puzzled and thought I was about to flush the red, then saw the red, confused again, looked at the white, and forgot for a moment what one I was meant to pull! I pulled the white one, with logic saying it was right, but as I pulled it, I felt it was wrong. It was like I saw white, but my brain registered red? I had to actually shake my head to try and sort it out! I am also tripping over some of my words. Not much, not quite a stutter, it sounds like I am nervous with what I am saying, but it's just not always coming out right. And, I have the shakes. Quite badly, feel it in my legs, but not noticeable, but in my hands, if I pick something up, or use grip of some kind, the shake is visible. I presume it's drug related.

I am meant to be taking the children to a place called Pennywell Farm tomorrow, but, I am not sure I can. I have told them I might not be able to do it but will try my best. Their little faces sad 'ok mummy, that's ok if we don't go' but so sad about it.

Oh, and DH has buggered his knee up! He is not a complainer when he is hurt or poorly, not really, so it must really be hurting. He was helping someone get their car out of the mud, didn't hit it, twisted it I think (wasn't there) but it's now swollen and he can't really bear weight on it. What a fucking useless pair we are grin

PavlovtheCat Tue 18-Feb-14 20:25:09

cowmop sorry things are still a struggle for you. And apologies for talking too much grin live take it steady remember, don't do too much. town is always a good excuse for a pit stop of coffee many times I find, but it tires me out so i don't do it often at all now. Are you able to get a good rest before tomorrow?

Oh. Oh. ! I remembered a positive - my patent leather black Fly boots arrived. I am going to rock up to work on Thursday for training with them on and my Frank Turner t-shirt on! They are well cool. And I have decided I love the feeling of new boots, so might have to buy more wink

How is everyone with younguns managing half term?

GoodnessKnows Tue 18-Feb-14 20:36:47

Shit, Pavlov. Holding your hand. I can identify with the drug-stuped confusion. I tried to pick an almost-empty bowl up while holding a phone. Soup-wall ensued. Thank goodness for dark carpets and wipes.
I hope that you manage to be kind to yourself re trips out and red/white loo pullies.
Hugs

livelablove Tue 18-Feb-14 20:44:29

Hi guys cowmop nice to see you, waiting for next installment.
goodness hope you aren't overdoing it with that machine!
pavlov that sounds a bit worrying about the "mental blanks" and having to limit your medication in order to work is not very good as you may have trouble going on working if you can't take all your meds, also some like the Norty(nickname) may work better if you take them regularly. Hope you are feeling better in time for the farm tomorrow. It sounds nice, i love kiddy farms.
I like the sound of your cool work look!

livelablove Tue 18-Feb-14 20:50:13

Pavlov hope your dh knee is not serious, at least you have lots of a stuff there like icepacks and things.

PavlovtheCat Tue 18-Feb-14 21:00:53

live I heard one of my lovely clients, who abuses drugs of many different kind, and refers to them by their 'street' name, say he was taking 'pregabs' and 'codies' (he claims for a bad back hmm) I know that codeine and other opiates are sometimes abused by drug addicts, but I didn't consider that pregabalin was. I was sat there like this shock I am not saying he was not being truthful in the reason for it ok, I am as he has form but the casual referral to it suggests it has an street name which means it is abused! wow! why would someone want to feel like that? shock grin I guess some people will just take anything available if they can.

I know much of the slang for prescription meds that are abused, which is why it surprised me - Diazepam is known as 'Vs' or 'Blues' (which is 10mg) or 'yellows' (which is 5mg, but they don't bother with such a low dose!). Tramadol is known as 'trammys'. Not sure who said Amy as a name we could use for amytripyline, but that has a street name close to that 'ammies'. So now you know what not to ask for at the docs! I always make a point of saying the medical or brand name when I ask for particular meds, such as diazepam.

I have had weird memory shit with amytriptiline, pregabalin and gabapentin, It was not even like I couldn't remember, but that I would recall the wrong information. And I would somehow know it, but still couldn't work it out. I don't have it as bad this time, but worried that will increase if I up the dose. I am getting better at taking it!

PavlovtheCat Tue 18-Feb-14 21:03:15

he has an icepack, I have given him some naproxen and some of my codeine. I am a bit worried about it, as I looked in NHS website and it seems to be one of two things that it might be - cruciate ligament, but don't think it hurts enough to be that, but time will tell, or, something else can't recall the name of but is the padding in the knee, which might get better in time, but often requires surgery to fix the padding. No!

Matildathecat Tue 18-Feb-14 21:07:02

cowmop, nice to see you. Sorry you've been suffering.

pavlov that sounds a very tough day. I used to take my boys to Pennywell when they were little! Have lots of lovely photos. Hope you manage it ok.

I'm a bit worried. For the first time since all this started I've got very definite indigestion/ gastric pain. My naproxen is enteric coated and I take my Omeprazole religiously. Am I being paranoid to be worrying about an ulcer?

I'm meeting my Pain Group chums for coffee tomorrow. They are a nice bunch. A bit of a random set of pals but we always have something in common to discuss!

Then my lovely friend is taking me up to London to meet my ds2 to see around his uni on The Strand. Feel ashamed I've never been. Then we are going to Isabella Blow fashion exhibition at Somerset house just next door to uni. I'm super looking foward to it. I'll be wrecked but it's a big day out for me.

I've been with people most of the day and am exhausted. Why so knackered just staying sentient? Early night for me.

livelablove Tue 18-Feb-14 21:09:56

Oh dear I hope not the bad one! This just confirms my motto that is "no good deed goes unpunished".

Lol at all the drug nicknames. If only there was an alternative that really worked when your pain is bad.

Matildathecat Tue 18-Feb-14 21:10:56

With the memory and speech problems I also find that in conversation I will think of something and if I don't butt in and say it immediately I lose the thought. It just sort of floats away so I know it's there but can't quite reach it. Does anyone understand what I mean? Or am I senile? sad

livelablove Tue 18-Feb-14 21:12:48

That last post was about pavlovs dh knee.

Matildathecat Tue 18-Feb-14 21:14:18

I suffer with my knee (I'm a wreck). Firm strapping really helps if I need to walk etc. in the meantime yes, ice, elevate and analgesia. Fingers crossed for Mr Pavlov. We need our DH's in good nick. wink

PavlovtheCat Tue 18-Feb-14 21:21:57

matilda I get that too, I would love to blame the drugs, but I suspect it's lack of sleep for years grin I would definitely keep an eye on the indigestion/gastric pain. I think it is possible to get stomach problems even with coated NSAIDS and acid reducing meds, but takes a long time. If it continues for more than a couple of days, take a break and see if it eases? i would say talk to GP, but, then they will just stop it! What is your poo like? is it very dark?

Matildathecat Tue 18-Feb-14 21:25:04

No, I don't think so but will inspect! Oh what fun. Could just be the rather delicious Greek salad I made for lunch with a friend today. Pity, it was bloody tasty.

PavlovtheCat Tue 18-Feb-14 21:50:42

Oh I love greek salad. My MIL was married to a Greek man once upon a time (before when she met DHs dad), she can make amazing greek salad, and spanakopita (sp), and pasta flora, and my absolute favourite Baklava! She sends some over most years but stopped this last year as it takes her too long now. Now, they will give you indigestion grin