1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Pain in neck

Posted , 4 users are following.

carol16456
carol16456

Dropped 1/2 mg pred yesterday so am now on 11 1/2 mg . For many years before diagnosis  have what I have today severe nerve pain in neck through to top of skull into top of left cheek .Nothing notable through my eye.My doctor put me on amatriptalin about 4 weeks ago to help with this .it helped as I have had nothing senifigantup until this last reduction .Does any one else get this .Co codamal hasn't touched it today .Have just taken my Amatrytolyn 10mg ,would it be ok to take another ? I see my doctor Tuesday re blood test result and this pain will have hopefully have gone away .I did Ask her at the start of my PMR journey about GCA and she said my blood test results were not high enough for this otherwise she would have started me on a much higher dose .Has anyone helpful comments out there as am,bit desperate .Just going to try ice pack .Hopeing itis just a withdrawal Carol

0 likes, 10 replies

10 Replies

  • tina-uk_cwall
    tina-uk_cwall carol16456

    Posted

    Hi carol, what a frustrating journey this PMR is? I cannot help you as I do not suffer from this problem, but I assume if you are on 11.5 preds you are a relative newbie to PMR. I sence that you are worried that it might be GCA related but you say that you've suffered from it for many years, so maybe it's not. Hang on in there and hopefully a member of this forum with more experience will be along with better advise. All the best, christina 

     

    • carol16456
      carol16456 tina-uk_cwall

      Posted

      Thanks for your reply .Was diagnosed last November via different doc to normal .She had a blood test done . Have been complaining of this particular pain and shoulder pain for years ,so at last something is being done about all ad it . Pretty sure its a nerve pain and had come because of withdrawal fro red but don't like to up the amatryptolyn without speaking to doctor first . Theses things always happen on a saturday or Sunday .never mind have ice pack on head hot water bottle back of neck , thick wrap round shoulders, my husband never new what a godess he had got himself to warm his latter years .
  • EileenH
    EileenH carol16456

    Posted

    There is no-one on the forum who is qualified to advise on doses of medications - how to reduce pred is a different matter. You could try calling 111 in the UK for medical advice from an out of hours doctor (OOH).

    Do I understand you have had it for several weeks? In that case it isn't necessarily associated with the pred drop. If you are really desperate though, the OOH service is the place to ask.

    If you have had this and neck/shoulder pain in the past it might be worth seeing a physio. Myofascial pain syndrome (MPS) affecting the shoulders can cause neck pain and referred pain because of trapped nerves - I kept mine under control with Bowen therapy which is something a lot of people have found helps with the add-on pains in PMR. MPS often occurs alongside PMR, is helped by the higher doses of pred and then reappears as the dose is reduced - it is caused by trigger spots of inflamed and hardened muscle fibres with concentrations of the same substances, cytokines, that cause PMR when they are spread through the whole body.

    • carol16456
      carol16456 EileenH

      Posted

      Thanks Eileen , I have had neck face pain since I was in my 24 .Had concussion prior to onset also I beieve work related as worked as a draughts woman in the day of old when we had drawing boards the size of double beds . When I was 24 had 8 good teeth out because the dentist hoped it would cure it .Then put on diazipam for 10 years Didnt cure taken of in 2 weeks .Much to quick . On antidepresants to get me over that for two . Any on time diagnosed with atypical trigemminal neauralga , then they change that to something else , when in 40 s spread into neck shoulder and down right arm and when it started down left shoulder I had blood test 4 months ago that's when they decided I had now got PMR . It's been a long journey to get to this stage . The pred took about a week to kick in but I now realise what I had put up with all these year . When I saw doctor 5 weeks ago told her I was still getting this awfull nerve pain and she then put the amatryptolyn into the mix . I see her soon for latest blood test result so will speak to her then . I One thing I would ask you , I was sorting out the preds and talking at the same time 'we have visitors ' and wondering if I took the 5 mg ones . If I didnt would I notice much today , am normally so carefull . Use to give out medication at vets where I worked part time recent years . Taking 11 1/2 tabs at moment
    • EileenH
      EileenH carol16456

      Posted

      You mean you possibly missed 10mg? I think you might notice that yes!

      Never sort out medication with other people around! I have a dossett box which I fill each evening with the next day's pills since I have 3 lots. The only one I don't put in unless we are going somewhere away from home is the nighttime lot - I always take 24 hours-worth of pills with me. If you just have the pred to worry about then you can get boxes for a whole week, put the pred in on Sunday night and it doesn't matter if you have visitors - they are there and right with nothing to worry about! No fiddling about with cutting tablets and stuff. 

      My neck and shoulder pain also sometimes affected the back of my head and I'd had it since I was in my teens on and off. I had an accident as a 4 year old that probably didn't do my back much good. After a whiplash injury in my early 30s it was utter hell - but a combination of Pilates and Bowen therapy every few months made a big difference though it never went away altogether. I also had a single wisdom tooth that had been growing squint for the last 30 years removed a couple of years ago - miracle! Neck and shoulder pain pretty much cured!

    • carol16456
      carol16456 EileenH

      Posted

      Would it be ok to take 5 mg Incase i hadn't taken the just for today  ?
    • carol16456
      carol16456

      Posted

      would it 

      be ok to take a5 mg pred Incase i had not taken the 10 mg

    • EileenH
      EileenH carol16456

      Posted

      Won't do any harm I don't think - one day of too much doesn't matter. If you forgot/took too much you won't be the first or the last! One lady was thinking how well she was feeling - then realised she'd been taking 5mg tablets instead of 1mg ones. 
    • carol16456
      carol16456 EileenH

      Posted

      Thankyou Eileen , rang 111 but they say if I havnt heard by 2 pm to phone them back , but would rather take now than getting nearer to next dose . You deserve an honour or something really nice for all the helpful advice you give to us all
  • LisaCACO
    LisaCACO carol16456

    Posted

    I have GCA with nerve pain. my docs opted to give me gabapentin instead of amitryptyline but my cats take it, lol.  both are good for this nerve pain thing. I just dropped in to express my sympathies about the pains. Nothing like nerve pain. hope it has improved for you.
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.