This is now gone on for 8 months and getting fed up with it.back and leg pain getting silly.on 500mg tramadol and 600mg pregabalin .my main problem is i cannot sit down if i do the pain increases 10 fold and takes hours to settle down just had my 3rd mri and waiting for results injections in back do not seem to help and waiting for procudure to burn nerve endings.keep getting told to excercise bla bla but it is agony to go to the toilet never mind bending up and down .can anyone help who has had same problem
Thanks Peter
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Peterpan1961
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I've had something similar. It was so bad to a point I could only sit for 10 minutes and my butt will start hurting. First was my quads getting sore, then legs started getting tingly, then one day my coccyx was in severe pain when I sat down on a soft sofa (as if I just broke it). Then buttocks started to burn, can't even sleep on my back without my buttocks burning. Was almost to the point where it would start to burn when i slept on my sides!
Had it since last November and it has gone away to I think to somewhat normal conditionor at least close to it .
I cannot tell u what worked but i have been doing cardio exercises on the elliptical (20-30 minutes with moderate intensity). started taking b-complex, omega 3 dha eha, and also had Chinese medicine.
I don't suffer as badly as you do, but I too have leg pain that no amount of painkillers will mask. I have, however, started doing aquafit which is basically a routine of exercises carried out in the pool. I am actually finding this helps and as your body isn't weighed down by its natural weight, it's easier than the same exercises would be when not in water. I would definitely recommend you give it a try (check out if there are classes in your local swimming pool), but start off easy so that you don't have the added pain of muscles as they begin to wake up to a new routine. Surprisingly, even that sort of aching is preferable to the sort of pain you're currently experiencing and it soon passes.
The class I go to is twice a week and, although comprises mainly of women, there is a man who goes and he swears by it as it's also helped him to lose weight.
I'm not a medic, nor know exactly your condition for which they are suggesting the procedure you mention.
But I wonder if a TENS machine may help ? I used one when I had both of my children and whilst that was transient ( well a good 24 hours plus ) pain, I know they can be useful to some people for chronic back pain. Also I think someone else has suggested aquacise - good way to exercise without the body weight being an issue.
Personally I would try never to take tramadol ever again - very addictive and added to my pain after about 5 days of useage. Weaned myself off it over a short period once I had learned of the disbenefits - and whilst I had a week of hell ( shakes, tearful, wobblyness, more pain etc ) I was SO much better NOT taking it - might be worth talking to GP about this ?
Wow i am very concerned after all your comments about tramadol as i am taking so much at the min.i was told they are not addictive if you are in pain .
Is it just sitting, or does walking have the same effect? Have you tried heat treatment and/or massage. Maybe a physio referral from your dr? Have they looked at possible trapped nerve? Maybe sitting aggravates it?
Yeh done the lot my back is now in permer frost state haha
Oh, I really feel for you! I have a very similar problem in that I spend most of my days lying down and do find it very limiting. Thank goodness for lightweight and portable tech. I didn't find the injections helped either and neither did my husband who had them for Trochanteric Bursitis. I also had one in my shoulder - spent a lot of time regretting that as the pain in my shoulder just got worse. My main problem is that I have Spina Bifida Occulta (Occulta just means hidden - some people don't know the term so I don't like to assume) which has caused Tethered Cord Syndrome. This is a recent diagnosis so I'm planning on waving the paper with the description of the syndrome under my GPs nose and hoping I'll get better painkillers as the condition is described as causing 'unbearable pain' amongst other horrors (to me at least!) and, who knows, maybe I'll get better pain relief. I never feel that they believe I'm in that much pain which is probably my fault as I don't think I've made it clear enough that I'm coming to see them on a good day - otherwise I can't get there. They suggest things like exercising to me as well - yup, not so simple when you feel like someone has shoved a massive razor blade in your spine. The only thing I can think of, if it's possible for you, is that there are some 'in bed' exercises that might be able to help. Not so much for pain relief but for keeping you as mobile as possible which ultimately might help. I do worry about muscle loss and increasing inflexibility. I get my exercise vids from YouTube - it did take some searching to find suitable ones but they do exist. On my better days I do have a gravity strider/elliptical walker (these machines seem to have a few names). I find this a good way of exercising as these exercise machines don't put pressure on joints and the movement is a gliding one. Less jarring. Can't say it's a pleasure but I grit my teeth and subsequently keep my dentist busy.
Thanks hun sorry to hear you in so much pain,isnt sad when we hear other people have got it makes us feel better🤔hope you feeling better soon.and yes i am the same when i am telling docs and consultants how bad things are i can see in there eyes they dont believe us haha thats my winge for today thanks for replying hun
Lots of useful info there.....I do have OA in lower back and find a back brace helps. You can get them on line and they don't cost an arm and a leg, although you cannot wear it all the time or else you lose muscle power in your back....Hope you find the right thing for you very soon....
I totally sympathise the majority of my pain is in my hips and legs exercise is all well and good if you can actually walk to begin with. I was taking duloxetine 60mg and 200mg tramadol and still suffering feeling lucky at the moment as my pain is at lower end of scale so have decide to cut out all meds as I feel they are not benefiting me I am just becoming tolerant. I have not been offered any other treatments at all and had to fight for 1 mri let alone 3, do you think physio would be of benefit to you I have an appointment that I am paying privately.
Yeh i am private through work so its east yeh have done physio 10 sessions and i was ill aftet every one haha tried acupressure/puncture didnt help good luck with yours thanks for reply
So sorry to hear that you are in so much pain. That procedure sounds awful. my heart goes out to you.
Obviously I don't know your mobility or medical status.
But as i understand it, you have to work out if the pain is caused by chemical imbalance eg a side effect of the tablets or lack of Vitamin D ect or whether the pain is caused by an actual physical thing eg shortening of ligaments.
I understand that you can't exercise. Actually many Fibrowarriors can't. we all have heightened pain receptors, causing us to do less, in time causing an unfit body, causing more pain. And the circle continues.
So its not really exercise for many of us. It's staying mobile. It's standing in a room and bending our neck and feeling the stretch all the way down our back. Doing that for 10 seconds four times a day for a week. Then bending our back the next week. It's slowly slowly slowly.
My personal experience was I was virtually bed bound for a year. Then I pushed myself to walk around the living room for a year then up the garden path for a year. Each timed I'd go back to bed with a migrain but I knew I needed to and slowly it became easier. It took me another four years to be physically able to get a dog and walk it for half an hour and I still have to be careful but I'm glad I did it.
My latest tablets Gabapentin (which is the cousin of Pregabalin) caused muscle cramp all up my legs into back, neck and arms. My Doc told me to doubled my vitamin D and that pain is well under control now.
I hope this helps.
One day there will be no more pain. The former things will pass away.
Hello Peter pan, I know how you feel our friend, I,m waiting for anMRI scan on my lower back coccyx area I too have trouble sitting even lying on my back! When I am in so much pain I call my daughter she will go to local swimming pool with me, she swims and I sit in the hot Jacuzzi and soak....no pain in water...do you have a shower in your home? I stand under mine every morning and gradually turn the heat up and let it run down my back,I gently lean fwd slightly holding grab rails and I rub voltarol gel into the affected areas using it in small quantities like a shower gel, whilst the pours are more open in the heat it really helps..as for nhs intervention I swear by hydrotherapy if you could get some near you...good luck to you the waiting is so unfair!!!
Had the same prob last two years nothing relive the pain seeing a back consultant in dec working on your core muscles seems to help a little very easy palartise nothing to heavy or it would be to much. Good luck if u find what it is I would love to know angela
I am so genuinely sorry to read this and I sincerely hope that you can find some resolution and relief to this issue. I can truly sympathise as I do not have a coccyx and I also have arthritis in my spine and so sitting is uncomfortable at best.
I can see that you have been given some amazing replies and advice so I will simply and sincerely wish you all the best of luck my friend.
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Vit d deficiency 
have been coping for a while now come crashing down
so down
Feel like I'm in a battle ground for having fibro as I've Been turned down by DLA for fibromyalgia. 
Down but not out... just asleep
