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Aching arms and wrists

Posted , 14 users are following.

muirkelsi
muirkelsi

I was diagnosed with Polymyalgia last November, and my doctor started me on 15mg. of prednisilone. This was wonderful as I had no more aching arms and wrists. I saw a rheumatologist a couple of months ago who asked me to go down slowly to 10mg which I did, but now have the pain back in my arms and wrists. I told him that I was very lethargic, and he said that could be due to the steroids. I have no energy at all, and have lots of hot flushes.

Has anyone else felt like this?

 

1 like, 34 replies

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  • Marilyn2501
    Marilyn2501 muirkelsi

    Posted

    Yes when I was first diagnosed the same happened to me when I was taken from 15mg then to 10mg then to 9mg that's when all the trouble cx me back and bit me on the bum the pain was awful and like you very tired no energy to do a lot but a lot of time to think of how much pain you are in and unable to do anything about it but I have found that this site is very good for backup and support and good ideas to make you a bit wiser with this complaint take care xx
  • escot
    escot muirkelsi

    Posted

    Funny you should report this, as I too was diagnosed as having PMR July 2013.I started on 20mg of Prednislone, and now on 8mg, for the past few months since reducing the levels, I too have the aching arms, wrists,burning sensations in my feet,and also fatigue. I am not having Hot flushes. Having being diagnosed  by a Neurolgist, It was suggested that I also see a Rhuematologist and he told me that I do not have PMR but Fibromyalgia,and coming off steroids will bring intense pain, he also said with PMR you do not have pain?????? I beg to differ on this
    • marykay62062
      marykay62062 escot

      Posted

      The doctors certainly have a difficult time understanding PMR. I was diagnosed in October and put on 15mg of Prednisione and I must say it was a miracle. Had a little set back, put on 20mg, and now after a month they have me on 17.5. It is keeping the arm and wrist pain in check but not the intense sweating. Also the fatigue drives me crazy as I have a very active life style (should say had). I wish you and everyone else an eventual recovery.
    • escot
      escot marykay62062

      Posted

      The point is that the Rheumatologist was adamant that you do not get pain with PMR, which I do not believe,,,he did say that I would be getting pain like I have never experienced before when coming off the Preds.  I tried to explain that about the aches, which seems to be more prominent now. I asked him as to what I could take for the aches,and his response was that he does not do pain, I should find myself a pain clinic...plus anything other than Paracetamol would make me feel drowsy or have side effects, also Paracemol may not do anything,???? and he was shocked that I was even taking steroids. Confused...because I am
    • twigjean
      twigjean escot

      Posted

      Im from across the pond - but can you go to another Rhuematologist. Correct me if I'm wrong but fibromyalgia and PMR develop on different age groups. Did they do a CRP or sed rate or any blood testing. Yes, I had lots of pain and fatigue is terrible. Im shocked that a Rhuematologist said he doesn't do pain.
    • escot
      escot twigjean

      Posted

      Yes I have put in to see another Rhuematologist.  I also thought there were different age groups re the PMR and Fib, but he told me no such thing! you can also have them bordering one another. I am 73, and I thought that FIB was for the under 60's....Yes I did have CRP and Sed rate,but I do understand that everyone has differnt levels,so what is high for one, is not always the same for others. The point I did not like was he was adamant that he thought the Neurologist did not know what she was talking about.....telling me that they will tell you anything. When I first went into my GP just over a year ago, with the symptoms I am having now she told me that she thought I had PMR, and should see a Rhuemi, which I did, but the Rhuemi then was not sure as to whether or not it was FIB or PMR as my ESR level was not high enough, it was when I asked for a 2nd opinion, that I saw the Neurologist who confirmed that my ESR had  risen inside a couple of months, that this indicated the PMR and that I should be put on steroids.....Whist being on the higher dose of steroids my ESR came down, and now with the reducing of them it is rising....I feel that I am in a no win situation, I have put on weight with the steroids and also have now puffy ankles,
  • marilyn46889
    marilyn46889 muirkelsi

    Posted

    I don't think 10mg is enough for you. It seems more like the PMR than the steroids.   You should ask if you can go back to 15mg.  This is just my thoughts!
  • Nefret
    Nefret muirkelsi

    Posted

    Fibromyalgia and PMR can go together and there is little difference in the age groups for both.  I was diagnosed with Fibro 3 years ago at the age of 66 and diagnosed with PMR when I was 57.  I don't think that doctor is right - steroids will help in PMR to the extent where they are often looked upon as a diagnostic tool, but are totally useless for Fibro as are most conventional pain relief drugs.  Steroids aren't a pain killer either - what they do is dampen down the inflammation which is causing the pain.  Fibro is often nerve pain and that is difficult to deal with.

    Steroids can be responsible for the flushes, but then so can PMR so we often get a double whammy.  The same can be said for the fatigue.  All I can say is that it WILL improve, just not yet.

    • escot
      escot Nefret

      Posted

      The  point is, The Rheumi has told me that you dont get pain with PMR,but I am sure that this is not so!!!!both my GP and the Neurolgist claim it is PMR,then along comes this Rhuemi who tells me that you dont have pain with PMR,and that he thinks it is Fib, and also he told me that Steroids will help with any inflamation!!!!!

       

    • debbie27473
      debbie27473 escot

      Posted

      I have had to read your post several times to take it in! No pain with PMR? Is he for real? How does he think most of us were diagnosed in the first place? My arm and shoulder pain and weakness has never completely gone away, even after starting pred. Hanging out the washing now takes twice as long as it used to and even reading a book/magazine has to be done with a rest every minute or so or my arms/shoulders kill me. As reported last week I have also been getting dreadful chest pain which creeps up to my neck, then my face/teeth. I reported this to my doctor yesterday. She check out my heart which thank goodness was fine and said she thinks it is acid reflux caused by the steroids and other tablets I have to take, so....another one is now part of my daily intake (Omeprezole). Apparently, nothing can be done about the hot flushes, weakness, tiredness etc. She smiles sympathetically and says 'It's probably the steroids. Perhaps you should reduce them now!' I'M TRYING! No wonder I've got high blood pressure. Still, at least now I know there's no pain with the pmr lol! Hope you can get some real help very soon. Take care.
    • EileenH
      EileenH debbie27473

      Posted

      I do wish they wouldn't assume it's the pred - it is just as likely to be the PMR! 
    • escot
      escot debbie27473

      Posted

      I am now on 8mg of Preds, my arms feel like lumps of lead,everything I do nowadays takes  me twice as long as it used to, Whilst on  higher dose of Preds , I never had to look at a painkiller. Now I have to make sure that I have Paracetomol in my bag,even taking just 1 makes me drowsy. I have had this problem for a long time,Paracetomol does not take the pain away,it just takes the edge of it, Taking steroids has increased my weight and made my face rounder. As I also have COPD I have to take inhalors and  puffers,which contain a small amount of steroids, My GP suggested that if the pain is really really bad,is to take condeine.

      I have asked to see another Rheumi and I am waiting for a respone, also I have sent in a letter of complain about this current one, so far I have not had a response, (it is 2 weeks to-day that the letter went in)

       

  • tam1272
    tam1272 muirkelsi

    Posted

    i was diagnosed with pmr and gca in feburary 2014 and im only 42. i was on 60mg but down to 20mg at the mo. i get terrible hot flushes andi  am hot most of the time. i still have lots of pain in my arms wrists and hands which shake all the time and i get mussle spasms and cramp in my fingers. i also still get burning and very sharp pains in my knees and lower legs which are very weak. not sure if the steriods are helping. they just keep telling me that these things take time? 
    • muirkelsi
      muirkelsi tam1272

      Posted

      Thank you so much for your reply.

      My doctor kept telling me that these things take time too, but to be honest I don't think she knew very much about PMR. It has been a huge difference being seen by a rheumatologist, as he is very knowledgeable about it, and has given me a suggested predisolone reduction regime which I am following. I started on 15mg, and am now on 10mg, but still get aching arms and wrists, but nothing like it was a couple of months ago. My biggest problem is that I am so lethargic, and hoping that I will feel more energetic soon.

      Hope you feel better.

       

  • marykay62062
    marykay62062 muirkelsi

    Posted

    I don't know about everyone else but it is getting annoying. I no longer see the Doc but his PA instead. Have jaw pain....go to your dentist. Extreme fatigue.....maybe you have cancer. Get you off the pred for it isn't good for you.....too many side effects. I'd switch to a different Doc but it would probably be the same thing all over again. How does one deal with this?
    • escot
      escot marykay62062

      Posted

      Dear Marykay,

      Could it be that these Drs just have no clue,possible that they specialise in one field and do not have any clues or ideas for other problems.

      How many people do have pain with PMR this is what I would like to know becuse, according to the Rheumi that I have been seeing he claims that PMR does not have pain.... I am a total loss

       

    • marykay62062
      marykay62062 escot

      Posted

      Believe me I had pain and could hardly walk. 15mg took care of that instantly. Oh what a relief!! The doctor group seems very good but the pysician assistant is my problem so if it continues I will have to make a complaint.
    • EileenH
      EileenH marykay62062

      Posted

      Find some reading matter for the PA - jaw pain could be GCA, fatigue is normal in autoimmune disorders, pred might not be good for you - neither is PMR and it is the only option in PMR - and he/she needs to learn about their patient's illnesses.

      It is less of a problem in the UK - you might have an NP (nurse practitioner) but they are rheumy specialists and not substitutes, you still see the doctor.

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