Burning back: Well been to see GP today... - Fibromyalgia Acti...

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Burning back

kazhodluckymilo17 profile image

Well been to see GP today because can't stand the burning sensations in my back anymore been going on solid for over a week now non stop can't even bear my clothes or bed clothes touching my skin..... sleep deprivation is not my friend.....I told him it had become more of an issue since upping the amitriptyline to 20mg advised to reduce back down to 10mg.....been on these for about 7 weeks now with no real noticeable difference....... reacted to pregabalin so doctor they not an option.......going to reduce but dont want to keep taking medication that is making no difference to me....my other news is rheumatologist has written to GP to ask for referral for surgery regarding carpul tunnel .... test shows both wrists and elbows affected with the right one being worse.....I thought they tried splints first or physio but I suppose that depends on how bad the entrapment is.....have agreed with referral just to see if I can see if they can try physio or something first or am I being to hopeful.....saying that if the surgery stops me from waking up every 20 mins with numb and tingling hands it may be worth giving it a shot.....its getting harder and harder to do 12.5 hour shifts at work on so little sleep....also got an appointment with occy health at work tomorrow not really knowing what to expect from this but my team manager thinks it will be beneficial to me that I see them....sorry for the long post feels good to get things off your chest every now and then :)

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20 Replies
rosewine profile image
rosewine

Yes it is often good to write things down and get your thoughts out there as I think sometimes it can help us come to decisions. My OH had the same problem as you with the Carpel Tunnel Syndrome and was getting very disjointed sleep and at the time he had a very long commute and worked long days and he was really struggling. The first week after the op. was very painful but he has not regretted the decision in fact he was back at work within a few days after the op. (his work was admin based not manual might I add).

It is difficult when you are sensitive to drugs I do take Pregablin and it has helped with the burning sensation I still get it but not nearly so bad but I cannot stand the maximum dose as it makes me feel I am on another planet. I therefore balance between feeling quite human and having the worse of the burning sensation brought down to a mangeable level the majority of the time. it is worth trying to see whether reducing amitriptyline works for you.

Hope the appt with Occupational Therapy at work is productive. Please let us know how you get on and what you decide about the operation.x

kazhodluckymilo17 profile image
kazhodluckymilo17 in reply to rosewine

Thanks Rosewine....I am going to reduce my dose of amitriptyline see if it helps....will keep u posted :)

ALKT profile image
ALKT

the burning sensation in your back may also be a reaction to amitryptline. if it is only on one side it might be fasciitis inflamation of the part that attaches the muscle to your ribcage had that for nine months before it settled. best wishes

kazhodluckymilo17 profile image
kazhodluckymilo17 in reply to ALKT

Its all over my back ALKT :(

TheAuthor profile image
TheAuthor

I am so genuinely sorry to read that, and I sincerely hope that you can find some resolution and relief to these issues. Carpel tunnel can be painful enough on its own without anything else intervening. I want to genuinely wish you all the best of luck with your Occupational Health appointment tomorrow.

All my hopes and dreams for you

Ken

kazhodluckymilo17 profile image
kazhodluckymilo17 in reply to TheAuthor

Thank you Ken

stumpedok profile image
stumpedok

Commiserations on the burning sensation...One I am all too familiar with across upper back...Over the years I have found redirecting my focus away from thoughts about pain to anything else just to distract my brain from reminding me every second of the burning sensation, has helped. Doesn't mean pain goes away only that awareness of it gets shoved to the sidelines and it loses its dominance over me. I've found that if my focus is on my pains I feel as if I am nothing but a ball of pain. Can't really explain myself any better at mo but hope you get idea.

Would be interested to know what tests you have had to diagnose carpal tunnel? From my own past experiences I am cautious about whether symptoms in hands, arms are because of problem actually located there or whether it is really referred pain from neck, upper back? The muscle knots of Myofascial Pain Syndrome can cause referred pain in limbs.

I hope you find your answers and some relief.

kazhodluckymilo17 profile image
kazhodluckymilo17 in reply to stumpedok

I have had a nerve conduction test at the hospital stumpedok and I understand what you are trying to get across regarding the burning and I am trying very hard not to let it take over my every thought but when you cant even stand your clothes touching the skin its very hard

stumpedok profile image
stumpedok in reply to kazhodluckymilo17

I do understand....These pains are the opposite of trivial and demand so much from us in terms of trying to deal with them.....I sincerely hope you find relief soon.

Thanks for info on nerve conduction test......I'm trying to make sense of my own symptoms, present and past and in so doing hopefully work out some credible questions to ask of the medics!

kazhodluckymilo17 profile image
kazhodluckymilo17 in reply to stumpedok

My rheumatologist organised the test for me stumpedok

Sorebones profile image
Sorebones

I can sympathise with everything you said. I've been there. I used to be woken up several times a night, if I got to sleep that is. My hands were unbearable at times. In the mornings just stretching my fingers felt like they were breaking. I had carpal tunnel release on my right hand three months ago. I was meant to have my left hand done next month, but I have decided against it as it has made no difference to my right hand, pain or stiffness wise. It has stopped the pins and needles in my fingertips to be fair. I asked for splints instead. Like you, I thought that I would go through the splint, physio etc before being referred for surgery and was surprised I wasn't. I had the nerve test and it showed mild compression, but my surgeon told me that the nerves were severely compressed and that the nerve test was used as an indicator.

I was then diagnosed with Fibro. Before my main diagnosis was OA. My neurologist has me on amitriptyline. I started on 10mg upping it by 10mg a time up to 100mg. I am at 70mg and now sleep like a baby. My hands don't wake me up, my legs may jump or may not, I haven't a clue. The stiffness that used to take me 2 or 3 hours to shake in the morning has reduced. I realise that this may be temporary as so many of the treatments for Fibro are, once my body gets used to the medication. The downside is that my eyes won't stay open after 9pm.

I hope you find some relief. This is just my story, you have to write your own. Your carpal tunnel release could be the best thing you have done. You don't know until you try.

stumpedok profile image
stumpedok in reply to Sorebones

Hi sore bones. ...always much to learn from other people's experiences. Would you mind telling me if whether at the time anyone investigated your neck, upper spine and state of your muscles, connective tissues in those areas to rule out any possibility of 'referred' pain to hands? On different occasions consultants have opted for different conclusions on me and gone on to treat differently! Did you see an Osteopath or Chiropractor with your hand problems?

Any info welcome. All best.

Sorebones profile image
Sorebones

Thanks for asking. I have foraminal stenosis of 4 nerve roots in the cervical spine due to severe OA so it may well be referred pain. (Also 2 in my lumbar sacral spine). My neurosurgeon won't operate until the radial nerve pain becomes unbearable. Since I was medically retired the pain is under control and I know how to avoid it in my normal day. I have asked my hand specialist if it could stem from my neck but she dismissed it. You have spurred me on to ask the question again when I see her next month.

I am interested in your question about muscle and soft tissue exam. Do you have any further info on that?

stumpedok profile image
stumpedok in reply to Sorebones

Hi sore bones. ...Thanks for reply. In answer to your question I have used both chiropractic and osteopaths in the past. In the end I found osteo suited me better because of their strong focus on muscle/ connective tissue in addition to joints. I don't understand the approach of some disciplines who seem to make diagnoses without looking at the body as an inter connected whole and without actually in depth hands on physical examination (pressure, massage type prodding etc) of the state of my muscles/connective tissue. If these are messed up not only do they cause pain in the primary location but frequently elsewhere by referred pain. Sometimes by releasing eg the neck problems, referred pains in arms / hands can be vastly improved or disappear completely. I have experienced this for myself many times. Perhaps next time you can ask your specialist on what basis she has dismissed the possibility of referred pain from neck?

I only realised I had multiple knots across my upper body etc through physical therapy of someone actually massaging muscles/connective tissue but I find too often that NHS staff simply don't seem to spend enough 'hands on' contact with my body to find these things out! Although no one ever used the term ' myofascial pain syndrome' to me I am increasingly convinced they should have done!

I also have some OA but at mo I have more questions to ask medics on that one!

Sorebones profile image
Sorebones

I am really interested in what you are saying stumpedok. I apologise to kazholuckymilo17. I don't want to hog your post and hope that you can get some answers from the conversation.

The system doesn't provide for looking at all the symptoms under one umbrella so to speak. It has been my bugbear for a long time. I ended up asking my GP if it was possible that I had Fibro after reading an article in the Arthritis magazine Inspire. I researched Fibro, made my own notes of pain, fog etc every day for a few weeks then asked the question once I was sure in my own mind. I felt like a hyperchondriac (spelling?). My GP wanted to refer me to the rheumy dept at our local hospital, but I had been there before and had been sent for carpal tunnel tests and referred on to the hand specialist. I had researched private health care and found a rheumatologist who had Fibro as a special interest so I chose to pay to see her instead as I hoped she would be able to give me an answer. She certainly did, and was disgusted that it hadn't been picked up before. I was referred to the sleep clinic. Still not been due to waiting lists, but as the amitriptyline is knocking me out I think I'll pass on that.

Getting back to your Osteo stumpedok, I couldn't let anyone touch my neck or across the shoulders. It is just too painful. I used to get a massage every two weeks which got rid of the knots but it had to stop because of the pain. Not muscle pain. My knots go to the bottom of my rib cage and I would love someone to get rid of them. I just can't stand anyone touching me there.

Read a bit about myofascial. Am I correct in thinking that it's like Fibro pain but just on one side? Is there any other differences?

stumpedok profile image
stumpedok in reply to Sorebones

Hi again. ...I can relate to problem of couldn't bear being touched. .....but now I think I needed a physical therapist who understood MPS and FMS and am considering restarting occasional massage IF I can find the right knowledgeable person!

For info on Fibro versus MPS I found the following link really informative and helpful

chronicfatigue.about.com/od...

Helped me also understand difference between Fibro 'tender points' and MPS 'trigger points'.

Good to know I'm not alone in wondering why there isn't more 'joined up' thinking between symptoms. ...like you I'm doing my own 'detective work! All best.

rosewine profile image
rosewine in reply to stumpedok

That is an excellent link thank you for posting it as it has answered some queries of mine.x

Newquay profile image
Newquay

I was like that on amitriptyline but got chanced to nortriptyline and was much better.

I belive its only diffarant because it how it's made up.

Take care hope you feel better soon.

G

kazhodluckymilo17 profile image
kazhodluckymilo17 in reply to Newquay

Thank you for the reply newquay I was getting the sensation before I started the medication but not every day and certainly not so intense I am giving it a bit more time on reduced dose...... may try a few days without as well just to see if it helps so I can go back to doctor and say I have reduced but didnt work....to be honest I dont feel any benefit on this medication anyway

Newquay profile image
Newquay in reply to kazhodluckymilo17

Your very welcome I burn all over I find if I sit on stool in shower

It helps as well.

I burn that much some times my husband moves away be cause I am to hot to handle! That's what I like to think any way.

all the best G

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