More Terrible Back Stories

[Matildathecat]

This is the support thread for all sufferers of back pain. Acute, chronic, agony or niggles, we are strictly non competitive. All newcomers very welcome. (Though be warned, the language can be a little 'ripe' ).

Here are our previous threads:

www.mumsnet.com/Talk/general_health/1871592-The-Back-Story
www.mumsnet.com/Talk/general_health/1992406-The-Back-Story-Continues

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.

So come and join us for moans, advice, downright rants or just a laugh.

Good thinking, Pavlov!

I am quite cynical about the notion of no bed rest though. It's all 'get up and back to paying taxes asap' when once upon a time medical professionals swore blind that 12 weeks in bed could sort out a disc problem, with long term physio following that. And the idea of no bed rest is not because that was proven to not work, but they felt it was better to be working. It doesn't just say 'get on with doing stuff you like' or even that it says 'get back to work, get back to work'. even though it is proven sit down jobs/office jobs produce more back pain that pretty much any other day job because sitting puts a huge amount of pressure on our vertebrae which it is not designed to do.

Yes, I'm cynical about that too, pavlov. I can understand the bit about trying to build up activity levels, & doing a bit of walking if possible, but there can't be any medical justification for pressurising people to get back to sedentary jobs.

My mum had back problems in the '80s - she was hospitalized a couple of times & bed rest was the advice then, along with traction. She was thought to have prolapsed discs - don't know if they had MRIs then? - & the treatment did seem to help. She also had a steroid injection at least once, & I think there was mention of surgery, but she definitely didn't have it. I'd like to compare notes, but she's been dead for over 10 years. Don't think I appreciated how hard it must have been at the time - she was a single parent for some of it, doing supply teaching, so the stress about not being able to work must have been awful.

Anyway, am rambling on. Glad you got an appointment date, pavlov. Sorry you had a crap night, mightbe - glad the massage was good though. Oh & good luck with the MP, matilda!

Wow, pavlov you have certainly not wasted your day. Loads of great info. I agree about us having a Suggested Resource area, any idea how to get this? Hope your pain is settling. And for the record, I'm lying on my bed and have no plans to move!

mightbe yay to counselling and massage. Both amazing,I'm so glad you are getting them both. Now breathe. Sorry about you missing ds footie but it's bloody freezing out and therefore bad for backs and there will be many further opportunities . I hope Electricity Boy had a great match. In fact in all seriousness it's good to encourage team sports to AS kids because it is good for mixing and also it's socially normal to be a bit obsessed with the team/ sport. My BFF's AS son is like that.

Waves to everyone else, so much chatter and fantastic info sharing.

So, My Trip. First it was yet again rearranged from 5pm to 1.30 so I'd planned to do all my research today but time was curtailed. Wrote an accompanying letter summarising my problems. Got to the Westminster office (sadly not in a Parliament itself but still jolly interesting. Waited then frisked by men with guns and taken through. There was a big atrium with cafés all around and lots of tables and chairs. And there was Zac, sitting and looking rather bored. So the meeting was in a public area which seemed a bit weird but never mind. He then offered us coffee and gave his assistant the cash. Then there was a bit of discussion and him being perplexed as to why I wouldn't sit down and me explaining why. Then I got going and he totally changed and got very interested indeed. He asked tons of questions especially about my legal case ( against surgeon number one).

Then we had a big discussion about the uselessness of ATOS and he was very critical of them and really quite knowledgable. He was baffled and horrified that I had received such shoddy treatment. Then, without my asking he offered to write to ATOS and give them a hard kick up the bum. THEN he said that although he couldn't influence the outcome of these assessments he would again act on my behalf if I get refused. He was fab. Such a shame he's a Tory.

Lastly we agreed that Richmond Park is magic.

Then my SIL and I sat and people watched before leaving and having lunch at Carluccios. So I'm knackered, in pain and wired but it was a good day. For anyone up against it and with an axe to grind go and see your MP, at least you're doing something.

So watch this space. Let's see if any of this makes any difference at all. Let's hope so.

And he was rather gorgeous .

Sounds like a great day, matilda! Hope you're not suffering too much for it now. Yes, shame he's a Tory - we say that about our local MP too, because he is pretty good at championing local causes & is genuinely hard-working.

Is your backstory (or should I say back backstory) in the first thread? I will look it up as I didn't realize you were involved in a legal case against your surgeon.

Hope everyone has a good, pain-free night - or at least that all the drugs work!

I wrote a huge long post to you matilda, and DH took the iPad out with him while I was sorting the children out for bed, before I finished posting it! the cheek! Anyway, I was going to say well done you for raising awareness of the ATOS shite, and for hopefully speeding up your own assessment. TBF on the Tories, they need all the help they can get following the shambles of ATOS and other corrupt organisations they have allowed to be involved in deciding the future of so many people, which might explain his niceness. pleasing on the eye is always helpful

DD showed me something today that made me feel a bit shit for being so moony about my lot. She has been watching a documentary about a girl called Joanne who has no limbs, born without them. She has made an impression on DD, who has shown me and DH the documentary separately. She is amazing - happy, clever, bubbly, fun, enjoys her life and her attitude is you only get one shot at life, live it to the full. She recognises her disability means limitations but she also acknowledges what she can do and concentrates on working on those things. Such inspiration. Reminds me of my luck, health, my fortunes and that actually my life is largely very good. My health problems should not dominate my life.

I said lots of other stuff in response to some other posts to. But on my other post. DH might even post it later when he finds it . So sorry for those I missed. I'll re-post when I remember.

The children are in my bed. Asleep. I have like an inch of room, they are sprawled. I feel very blessed today. DD and DS both said they were looking forward to having a baby brother or sister some day I told them that won't happen, but actually, I think I might be feeling a bit broody [shh don't tell DH]. We have no space, not enough money, and there is no way I could handle it physically, not just my back problem which in itself will likely cause huge problems, but also I suffered from mild HG with DD, severe HG with DS from like 10 days post conception (literally that soon) to like 2 hours before he was born (2 weeks late). I could not handle puking 5 times a day for actually 9 whole months with another one. But, I look at the babies i have and I think 'we did well with those two, maybe we should have more'. I do think part of it is that i love them so so much and would like to keep loving little ones, I actually thought today, I don't want them to grow up, but then realised i do, so maybe that means I want more and that's what it's about. It's only a little pang a notion that makes my belly flutter a little where it used to make me feel slightly scared

thumbwitch - thanks for that input. x.
Yy to SPD still being odd I think. They did an X-ray 3 years ago and said pubis symphysis now no longer separated but when I lie down on my back, my pelvis doesn't lie 'flat' iyswim? Its all curled up like a half open clam shell, instead of a fully open shell, if that makes sense?

Well, - drum roll - I asked for a gp phone call and - ta da!
have been given co codamol 30/500.
Collected the prescription at 5.58. Local chemist closes at 6.
Gp advised me to 'shoot off round the corner' - ha! couldn't shoot off if life depended on it. Next nearest chemist is 16m round trip. She said: 'if you miss the local one, then just drive to Tesco's.'
Yeah, like I can drive atm

Still, we'll see what the 30/500 do, once I can get them....

thank you for all good advice, I am really grateful.x.

first well, that's a bit better. I can't remember, are you able to take anti-inflammatories? If so, remember to take those alongside the co-codemol, they work best all together. Also keep using heat.

Does anyone take aspirin? Is that an NSAID? I have never really used it except when my mother would give them to us before the risks of complications in children was known. I think you can take it alongside co-codemol instead of napraxen? I might go look that up. Don't go taking it anyone unless you know, i am not offering a medical opinion here .

My feet have gone purple they are swollen and hot and red and purple and I am not impressed as my lovely sparkly silver nail varnish looks silly now! Anyone know what that's all about? I have had it before, but not as bad as a short while ago. I felt them hot and burny as I stood waiting for DS to finish on the loo (he still needs my help, little love) and looked down, to see them almost flouresent purple! Hands go the same sometimes. Possibly meds? tramadol?

Didn't realise there was a 'back' thread, hope you don't mind me joining in, I have had lack pain for several years, have had various pain killers and other medications, last year I had a X-ray which showed thinning of my lumber spine ( lower back ) but gp said 'nothing to worry about', I have now been sent back to physio which doesn't seem to be helping. My dad suffers with bad bones and has had a lot of surgery so I'm worried I will be the same . My gp just doesn't want to do much, I havn't had a scan even though physio thinks I should have one done, I'm in a lot of pain at night and when I wake in the morning I struggle to get dressed, the pain is worse when I am still, I can walk for miles on level surfaces but can not jog and am in pain going up and down steps.

marne you will see a theme with GPs if you read through the thread and the old one too you have to be pushy, and you have to cry and you have to make it clear how much it is damaging your life, and you have to be persistent.

If your physio thinks it is needed, can s/he write to your GP and ask? I know they can make contact, as my physio went to her boss as she was worried about my walking, and he wrote to my GP asking for spinal pathway referral. I had asked, he was reluctant, said he would do it following physio and they wrote and pretty much insisted. Or, ask for pain management or osteo referral - one of my MRis, my first one, was requested by a back pain osteo that my GP referred me to.

welcome btw, you will also see another theme here - we talk a lot.

Hi marne, nice to meet you. Hope you can get some support here. Sounds like you need an MRI and an actual diagnosis. How are you now and what meds are you taking?

first, well done! Try taking all your meds for a few days plus heat and rest and hopefully you will be in charge of your pain rather than the other way round. Does the pharmacy offer prescription collection and delivery? Might be worth asking.

pavlov, I remember that yearning???it did pass eventually but hard to resist. But, really?? Sounds a bit of an ask on your poor back never mind the vomiting. I've got a feeling aspirin is even harder on the stomach than NSAIDs so not much used. It's true you rarely hear of it being used for pain these days.

loon if you are sleeping with the amytriptiline I would def persevere. It took me a week or two to lose the comatose feeling. I still have to drag myself awake but once awake I'm ok. Am I right these weren't actually prescribed for you? I'd honestly have a chat with your GP. It makes me a bit uneasy self prescribing just in case there's any reason against it.

Waves tiredly to everyone else. My back is so achey and my leg gone dead but other than that I'm just fine.

Hi
Too tired to read or post
But don't forget me
And 'Hello!' to New Friend.

New Friend Marne.
Night night
Wish me a good one, y'all!
Wish you all a pain free n sleep-filled one.

Sleep tight, hon.xx

matilda Not surprised you are achey! rest well tonight.

you are right, I can't look after these two beautiful babies as well as I would like. 3 is such an odd number i would probably want to go for 4 It makes no sense to have another one - we are happy as a family of 4 (the children love each other, fight each other but that's to be expected and not as much fighting as there is love), it would be so much harder to go away for holidays or weekends, everything is geared toward 4 not more. It's a completely irrational pang, and I am sure it will pass with some active ignoring

sleep well everyone. I am off to listen to some calming music and try to sleep better tonight.

Is anyone watching Rev? It's great. Set to record if you can't stay up!

Pavlov, are you still up? Are you feet swollen as well as hot, purple and burny? Is there any blotchiness around the ankles?

WElcome Marne - I'm new here too, but it's very easy to settle straight in. :)

I believe aspirin is a NSAID, but yes, is generally harder on the stomach than the newer incarnations.

Bugger, just read back and seen that yes, your feet are swollen as well.
It's probably not the case, but you should really get your self checked for a blood clot; as you have it in both feet, it's not likely to be a DVT in one leg or bothe legs, but you might have thrombophlebitis in your lower legs.

You might not either, of course! But blood is puddling in your feet for some reason. I hope you're sitting down with your feet up - they only need to be an inch or so higher than your hips - and I hope it's not a clotting issue at all, but I would strongly recommend you get a check to make sure.

hiya all, have had a pretty sit day, dh has a sinus cold and maybe start of a virus- he has slept since about 5 and is still now.
So much for studying today! Dh asked me to take ds to nursery because he feels ill, it wouldnt have been to much really on another day (just a slight increase in achey-ness) but today I was getting a pain across the front of my hip- in the crease between hip and leg, every time I stepped onto it. This is new, I am worried i have done too much crouching down( sort of "remembered" I'm not supposed to do that about a week ago but how else can i change dd? on the floor) - also worried maybe the shag was bad for it too, surely theyd tell you not to if it was v important.
Have got low on di-hydrocodeine and morphine- have to wait for a doc appt tomorrow at 7.45, bit worried he will be difficult but hoping to have slightly diff situation because i am technically still post operative and alot of the pain at the mo is not just back but leg as well- deep hip ache and front of hip as said earlier, so sounds ike healing pain from the procedure I actually only take between 1 and 3 morphine pills per day- just when it gets too much or ive done too much, or in a gap between the other stuff and not 'covered". just generally fretting about it- any advice if any of you are still up about how to approach it? i think in this situation it is actually better NOT to cry as they seem yo put that along with "addictive behaviour". I am going to ask to be referred to pain team anyhow. I really need to be able to function as I have exams weds and fri and then research school in may which wil be more physical and i have to attend 100%. My mum suggested asking uni for a better chair so that is prob good idea, I havent gone to see the disability dept yet as i felt like i shouldnt but it may be getting to that point.
I still feel a bit of a fraud because the type of pain is never stabbing or sciatica like but an ache- but it slowly builds and builds and if i dont take pilss on time or do too much I feel like its in my head and my whole body and i cant ignore it- like toothache or migraine.
sorry having a moan but got it off my chest now.
I was goint to ask th doc to mri my back but after looking at your post pavlov, do you think he will not want to- not sure what i count as because they have found a "reason"- hip dyplasia but to investigate the back would be alsmost to go against that finding ho hum, i can only ask.
Hello, hello to Marne, well come. I can relate to the worry about parents' issues as my mum has long term probs and chronic pain with her back and hip and had a slipped disc about 10 yrs ago. she takes meds every day and there isnt much more they can do to make it better, i worry i am going to be in the same postion albeit for diff reasons. She relies on regular chiro too. I felt bad because she is in much more pain than i but funnily she has been the one person to take my stuff more seriously and puysh me to go back to the doc and ask for diff things.
hang on ds is up, will contin a mo

Hiya to thumbwitch as well, I was wondering if the name was due to you doing massage just before you posted that it was- haha, good one. I have only had 2 massages in my whole life and both were last summer, a month apart, boy i cant wait till the next one- i am deffo a convert. It was like a freaking out-of-body experience for me, fe;lt like stuff was being puled out of me, iykwim. do your clients usually stay quiet- I was told it was unusual to chatter all the way through as i did. I really tried to stay quiet for the 2nd one, but only partially succeeded. afetrwards i feel like i would tell my innermost sectrets to the masseuse!

pav have you ever been investigated for rheumatoid arthritis?

Symmetrical swelling in the extremities can be a symptom

Another thing for the list!

My legs are absolutely killing me today

Normally it's only the right but my back has been tweaking in the left today and both legs feel like hot lead!

Movable symptoms I don't like!

Maizie - I was a chatty therapist. I found it helped a lot of patients, often while they were chatting about stuff they would release muscles more easily, partly because they weren't "paying attention" to what I was doing, and partly because I do believe that people store their worries in muscle tension around the body. One lady in particular - I was working on her back muscles between her shoulder blades and said something about her carrying everyone on her back, and she just dissolved, wept that it was true, she had no one else to help her and her muscles relaxed like magic.
This doesn't work for everyone of course!
But another client, we used to chat away, and one session she seemed particularly stressed and tired so I thought I'd keep quiet and try to get her into the limbo-like trance - afterwards she asked me if I was ok, and had she done anything to upset me?! So I learnt to at least tell clients if I was changing my MO, and explain why - but most of them liked to chat, tbh. :)

Have any of you (particularly you, Pavlov) been tested for ankylosing spondylitis? Just wondered, when Maizie mentioned RA - the feet thing might be a symptom of that too. It's another autoimmune condition, linked pretty specifically to a cell marker in the body, called HLA B27.

loonvanboon, pavlov has said it but i can second that the symptoms with amitryptyline do take a while to go away- we're talking up to 2 weeks. I take 50/night which is max chronic pain dose and I dont think I get much symptoms at all now, as long as I take my pill around 10- if later I feel a bit tired/hungover in am - but this will dissipate if `i get going, have shower, go to uni and have a coffee etc. I deff think it's worth it. A whole section of my aches and pains disappeared as soon as i started taking it.
in other news I have sent off for the pre-payment cert, just 3 month one coz might be able for dh to clim income support when i leave my job. keeping all my receipts with the spec form for getting refunds- major hassle!
well done on your meeting with the MP matilda - sounds like you charmed the proverbial pants off the guy . seriosly. though, I hope he helps you get sorted. When are you sueing the surgeon?
my routine is so fucked, it's 11am and i am starting my studyind NOW, i know he cant help but why does dh get sick when i have an exam the next few days- happened last time, shit timing cosmos! weds exam is on concsiousness. ironically my fav subject and i'm going to do shit because of underprepareedness damn
thumbwitch please post the spelt scone recipe, would love to try your one. I m also wonderring about trying a 50/50 spelt and rye scone- could be tasty. want try spelt muffins and scitch pancakes nesxt.
ds (for newbies he has asd), said "no" twice to stuff I said today, and when i took him to nursery he said "hello" to the teacher at the door- massive
unfortuneately she is leaving soon (made redundant).
I really need to ring up someone and find out why the svhool for next yr is NOT ON HIS STATEMENT like I expected it to be- like the senco said it would be. ho hum, dh has visited another school (special, not resource mainstream like the one we put on the "preferred schiool choice form") and he is wondering if they would be the better choice. We have always thought to avoid special schools if possible because ds doesnt have a learning disability so can potentially learn new behaviour from other models and in special schools these will only be teachers- but he is insure because they seemed very good and they have been successful in aiding some kids to go on to mainstream school for either part or full time, I will visit and get a feel for them i guess, Ther are a few of us with these issues, I wondersd how you all decided what kind of school to try ? because i think all you others have kids older- already in school system i mean,
better go study fr a bit