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Does anyone else have knee joint pain?

Posted , 16 users are following.

Guest
Guest

I was diagnosed about 8 months ago and I have pain in my shoulders, neck, back and hips.... Also in my knees. My rheumatologist says the knee joint pain must be some form of arthritis not PMR.  Does anyone else have it in their knees? Anyone care to weigh in? I would sure appreciate it.

1 like, 31 replies

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  • MaggiGrace
    MaggiGrace Guest

    Posted

    Knees for me too.  My rheumy says it's still the PMR.
  • karen28161
    karen28161 Guest

    Posted

    It's my lower back for me ,such pain .Rhumy says nothing to do with PMR proberly arthritis 
  • kathy67492
    kathy67492 Guest

    Posted

    I just had a SynviscOne shot in each knee...had arthritis before and after a meniscus repair in both knees..started before the PMR. However, I think the PMR makes everything feel worse!....just my opinion!

     

  • gillian_25383
    gillian_25383 Guest

    Posted

    At present my knees are so bad I have problems getting out of chair.If I forget and sit on the footstool have to crawl till find a bit of furniture to pull myself up ☺Am off steroids (long story)and now on methotrexate.Blood markers improving.Hope increase to 25mg/week will give me relief or they say I might have to have injections (but they will teach me how to do it).Hope you get your knees sorted
  • pauline36422
    pauline36422 Guest

    Posted

    My knees to could not do going up and down steps. Very painful, but after bowers tech it's gone 
    • EileenH
      EileenH lucy82013

      Posted

      Bowen therapy or Bowtech is a sort of osteopathy for soft tissue - for muscles and tendons/ligaments. Tom Bowen was an Australian who worked out a hands-on therapy that helped relieve muscle problems and pain - it is an "alternative therapy" but the evidence is it works, Tom Bowen himself said if he couldn't sort it in 2 sessions you could go away and save your money.

      Google "Tom Bowen Bowen therapy" and read about it for yourself. 

      There are a lot of people on the forums for whom it has made a massive difference. I haven't met anyone yet who didn't feel it was worth a try - and worth every penny for those for whom it did work. If it doesn't make a difference after 3 sessions you need not go back for that complaint - but you may need more than 3 sessions in the long term, especially for a chronic complaint.

  • constance.de
    constance.de Guest

    Posted

    I think a lot of us have knee problems.  I have had PMR for nearly 4 years and have had painful knees the whole time.  I never had problems there before PMR.  

    Now gout has set in, knees and ankles excruciating if crystals get stuck.😡  But the good thing about gout attacks is that they disappear after a few days.  Wouldn't that be wonderful with PMR??

     

  • EileenH
    EileenH Guest

    Posted

    I had knee pain right at the start, a rheumatologist dismissed it as "just osteoarthritis, I can feel it". I don't know what she could "feel" but the knee pain had gone altogether after a couple of years of pred. 

    Add to that, if you are walking badly it can put a lot of strain on your back and lead to all sorts of problems - which can result in pain into the thighs and even down to the knee. 

    And now comes my usual suggestion. Much of this back/knee pain can be caused by something called myofascial pain syndrome which is often found alongside PMR and forms trigger points on either side of the spine in the shoulders, at rib level and in the lower back. They can be felt as hard knots inthe muscles and are due to concentrations of cytokines, the same substances that cause the inflammation in PMR. They often improve a bit with higher doses of pred but return as the dose is reduced. They can be dealt with much better using targeted local steroid injections in addition to the oral pred and something called manual mobilisation which can be done by physios or sports massage therapists My pain specialist would also have a go with her thumbs when she had time! Since that therapy finished having sorted it pretty well I go for occasional sessions of Bowen therapy - and I'd really recommend you at least try it. If 3 sessions haven't made at least some difference it probably isn't for you - but even removing some of the pain can result in needing a far lower dose of oral pred.

    I had been told my back and leg problems were due to wear and tear and I'd have to live with them - I couldn't stand for more than about 10 mins without having to look for a seat, walking for longer than 15mins was even worse, I felt sick with the pain. It wasn't due to bones or discs - it was all problems due to spasmed muscles. They ache, they can pinch nerves leading to referred pain - and it can be helped a lot when approached properly. Quite a few people on the forums have been helped by going for Bowen therapy - one or two haven't but even some relief is worth it. I like the session because it is as relaxing as a massage but so gentle that it is fine with PMR where massage is sometimes a bit risky.

    • EileenH
      EileenH

      Posted

      PS - forgot to ask: have you still got all this pain despite being on pred? Are you sure you are on a high enough dose? 
    • Guest
      Guest EileenH

      Posted

      Thank you all for your kind words.  I have been reduced to 3mg of pred. I am caught between a rock and a hard place because the less pred I take, the more pain that comes back.  I am 56 and I was told it is pretty rare for someone in their mid fifties to have this, however I have seen ages of some on this forum that are my age.

       Doesn't it make a person feel old? But the more I excersize the worse I feel.  Do you feel worse at night or in the morning?

    • gillian_25383
      gillian_25383 Guest

      Posted

      Good luck.As for age I was upset too when diagnosed at 45 as the booklet I was given stated average age of onset as 72.Mind you that was 12years ago (back under rheumatologist as pretty ropey again).I suppose there has to be exceptions to the rules.
    • EileenH
      EileenH Guest

      Posted

      Any dose below 7mg is considered low - in your case if you feel good at 5mg then stay there. The idea is not to get to zero pred - ultimately yes but only when the disease causing the symptoms has gone into remission - until then you need the lowest dose that keeps the symptoms at bay, that's all that can be done, manage the symptoms acceptably. By the right dose of pred and pacing on your part.

      Too much exercise will make you feel worse - your muscles are intolerant of acute exercise - they are unable to tell you you are doing too much and will take much longer than normal to recover after. You have to pace yourself and rest intermittently WHILE exercising and then rest properly to recover afterwards. Then you will achieve far more overall. Do too much on one day and the next you will feel awful. Split that activity over the two days and you will probably be able to do more. But you are better not exercising on consecutive days.

      Night/morning - everyone is different. The morning stiffness is because the cytokines that cause the inflammation are shed in the body every morning about 4.30am. Until that has been dealt with you will be stiff. The optimum time to take the ordinary white pred pills is 2am - that catches the cytokines as they emerge, no inflammatio is created. Otherwise, take it as early as possible and settle down for another couple of hours. But the stiffness can return during the day - either if you sit in one position for too long, it is called myogelosis (geled muscles) or if you do too much.

      Google "The spoon theory by Christina Miseriando" and contemplate what she is saying to you. You have a new normal - and overdoing it will leave you in pain and feeling ill. Pred is just part of the management - you have to do your part too.

    • EileenH
      EileenH gillian_25383

      Posted

      Average means just that - there will be some older, some younger, some much younger. Since there are loads in their 70s and 80s with it there have to be a lot under 70 to balance it out.

      But there are many people under 60 who have it but not labelled with it - if you believe only over 70s get it (and many doctors do) then you won't look for it in a younger patient with the right symptoms will you? And younger patients also tend to be what they insist on calling "atypical" - not raised blood markers, slightly different symptoms. Though at what stage the number of "atypicals" becomes "typical" I'm not sure. By definition at least half of people could be said to be "atypical"...

    • Guest
      Guest EileenH

      Posted

      Wow lots of good info here! Thank you. You must do a lot of reading.lol
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