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Polymyalgia pain ..........

Posted , 14 users are following.

karen28161
karen28161

Hi William ,I am a 54 yr old female ,had PMR for 2 years now ,started on 20 now I am on the reduction and on 5 mg of pred .like every one else I am still in lots of pain ,especially in the mornings and after tea time when I tend to sit down and relax .every day my pain is some where different , but most commonly in my hips,knees ,arms and shoulder and neck .some days it really hurts when I sneeze or take a big breath in ,like my ribs are going to crake ,.oh and my husband says I have this funny little waddle like walk in the morning till I gat used to the pain .My rhumy is pleased with my reduction .......but just keeps saying to me well !you will still have a little pain as you cut down on your PRED ........wish for just one day only he could experience all the pain some of us on here suffer .rant over xxx merry Christmas to all of you wonderful people on here xxx

1 like, 63 replies

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  • susan07411
    susan07411 karen28161

    Posted

    I hate being on the prednisone. The pain was so bad that I succumbed to taking it. I started on 20mg and almost immediately the pain was manageable. I reduced over two years to 5mg. I found that there are withdraw symptoms, much the same as the polymyalgia pain without the prednisne. I persevered and found that the pain eventually disappeared. I have not taken prednisone for 4 weeks. I was almost pain free after two weeks off the meds. It is into the 5 th week and the pain has come back quite severely and suddenly. I am going to try to ride this through. I have found that my rhumy does not help too much she just prescribes more drugs. I think that you must understand the complications and side effects of the meds, and do what you think is best for yourself. I feel that I am off prednisone for now at least. You must make your own choice. I hope that I can get through this flare up without more drugs.
    • teenyjeeny
      teenyjeeny susan07411

      Posted

      Hi Susan I wish you luck with that I  have tried doing that a few times but the pain got so bad that I had to give in and take the pred in the end . I didn't want to and tried really hard but it made me to ill and my Rhuematoligist told me it was stupid to do that , she doies not want me on the pred but does not want me ill as it can cause other things to flare up. like my GCA came back  wich can make you go blind so please be careful good luck and a very happy pain free Xmas x
    • pat38625
      pat38625 susan07411

      Posted

      Hi Susan, like yourself I hate being on medication like steroids.  Having said that I have never experienced pain like PMR untreated.  Lost  my mobility and had to struggle to get in and out of bed, shower.  Everyone is different and you must do what you think works for you.  Good luck
    • susan07411
      susan07411 teenyjeeny

      Posted

      Thank you for your concern. I use gigung/tai chi as a form of help through the pain. It has worked for me so far. I have tried many forms of alternative medicine and this one is the best for me.
    • EileenH
      EileenH susan07411

      Posted

      I don't think anyone WANTS to be on pred. The withdrawal symptoms you had can be avoided by reducing very slowly. The pain you have now is unlikely to go away in the same way the steroid withdrawal did, it is more likely to increase and possibly get to a stage where you are immobile. I had PMR for 5 years with no pred, it wasn't particularly severe but I never had a day without pain and put on a lot of weight because I couldn't move properly to exercise. After that 5 years it suddenly hit like a 10 ton truck - I couldn't get out of bed - and I know several people whose PMR was misdiagnosed or missed who experienced the same thing. Some of us developed GCA - and then there is no choice, you take pred or you risk going blind, something that possibly happens to more than 3,000 people per year. Some experts think not treating PMR promptly makes you more likely to develop GCA, they are very closely linked.

      In addition, it is not a clear cut case of "pred is bad", "no pred is good". If you don't take pred to control the inflammation in the blood vessels then in time they are also damaged and other vascular illnesses can occur - including in some cases aortic aneurysm. Longstanding levels of inflammation in the body also increase the risk of developing certain cancers. Being immobile as a result of the pain predisposes you to weight gain, increased BP and raised cholesterol levels as well as being a risk factor for osteoporosis. The autoimmune aspect of PMR itself can lead to depressive mood and the pain and isolation that tend to go along with a "no pred" approach make that worse.

      It's a bit unfair to say your rheumy "does not help too much" - there is a very limited amount she can offer besides pred. If you reject that, there is precious little else she can offer. And while you may be "off pred for now at least" - if you yoyo with the dose it becomes increasingly difficult to get the inflammation under control. Last time 20mg worked the miracle, next time it may need more - and if you are so unlucky as to develop GCA (1 in 6 or so PMR patients do go on to do so) then it may take even more pred to save your sight. 

      None of this is meant to scare you into doing something you obviously don't want to - but not only do you need to understand the complications and side-effects of the DRUGS, you also need to be aware of the complications and side-effects of the disease. They are no banal either.

  • susan07411
    susan07411 karen28161

    Posted

    I am constantly being told to exercise. I know that it is good for polymyalgia but knowing and doing do not help when one is in full pain mode. Hot baths, acupuncture, massage, they all help but can become expensive. I have taken up qi gung a form of tai chi. I find that I can do it anywhere at any time. The breathing, and smooth gentle exercise helps when the pain is high. I have done this for two years and can recommend it for polymyalgia sufferers.
    • EileenH
      EileenH susan07411

      Posted

      If anyone is interested - google "Tai chi for arthritis Paul Lam"

      Fascinating - but there was a lot I couldn't have done when the 10 ton truck arrived! Not even sitting.

    • teenyjeeny
      teenyjeeny susan07411

      Posted

      I agree I cannot excercise as I have OsteoArthritis and Osteoporosis  and Spondylolisthesis which is very painful so I have Acupuncture and go to a Chiropractor it is very expensive when you are pensioner. I also have Glaucoma and just been told I have type 2 diabetes. the pains of getting old!!!  I was well untill  I got PMR then followed a heart attack and all these other things have followed they told me that happens because they are all related. But they didn't tell me that when I was diagnosed with it though.not till I got these other things then they tell you oh well Etc!! Thats life I guess I know there are a lot of people far worse than me but that does not help you when you are in pain all the time . I will look into qi gung see if I can do it thanks .
    • pat38625
      pat38625 EileenH

      Posted

      There is no way I could do any form of exercise even gentle exercise.  Actual walking at a slow pace tires me out.  But sure it's early days and I agree with you about the 10 ton truck.  I felt I had been beaten all over my body with baseball bats.  

      Never as glad to get pred it all my life.  

    • Nefret
      Nefret pat38625

      Posted

      Don't confuse exercise with 'exercises'.  I have very little mobility, but have been given a whole series of exercises which can mostly be done lying on the bed and they have given me a lot of help.

      If you think you could do this, you can self-refer to a physio (in the UK) or be referred by your doctor.  They really do help with core strength and ultimately to improved stamina.

    • pat38625
      pat38625 Nefret

      Posted

      Thank you.  I am enjoying the absence of pain and getting my mobility back. I am still very weak though.  I do believe I will be referred to a physio because I have very little strength in my right arm.  I have my first hospital appointment at Endocrinology on 8th January so I will see what happens then.  
    • susan07411
      susan07411 teenyjeeny

      Posted

      Medical qi gung would probably help you more. It is a program specially developed for the individual, many acupuncturist, physiotherapists can do this for you. Once you have your program all you do is follow it. I started with medical qi gung progressed from there to qi gung and now tai chi. Already I have taken control of the new pain from not being on steroids. I have found that the exercises must be followed whenever any pain is in the forefront. For me it is better than more drugs. I am working with my GP she believes that I can do it too.
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