The Back Story Continues

[Matildathecat]

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!

[livelablove]

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]

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

[GoodnessKnows]

In Thailand

[livelablove]

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

[PavlovtheCat]

losty did your ds have a good birthday?

[magso]

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]

Happy birthday to losts son. Ds is 14 too.

[LostInWales]

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 ) 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' . 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]

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.

[magso]

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

[GoodnessKnows]

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]

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]

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]

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]

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]

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.

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

[GoodnessKnows]

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]

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]

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.

[antimatter]

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 .

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]

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]

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

[GoodnessKnows]

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]

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.

(((((((((((((((((((((((((((((((())))))))))))))))))))))))))))))))

[magso]

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.