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How did your PMR start ?

Posted , 32 users are following.

veronica81435
veronica81435

Hi Everyone, I'm just interested how people's PMR started . Just think it maybe would help the medical pros  on here . 

Mines started at the age of 44. Following a virus myopathy .Maybe before this because for six years before this suffered with bad frozen shoulders and hip pain. Thank you for your input 😃

2 likes, 128 replies

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  • febes
    febes veronica81435

    Posted

    Hi Veronica. I  am not sure what started my PMR. I was diagnosed in early October 2014, after being in terrible pain for about three weeks. I was 48 at the time. I thought I was just getting the flu as I started to ache , but over the next two weeks I woke during the night having to lift up one arm with the other to move it due to pain and no strength, I also developed aches all throughout my body and got so bad I was thinking of getting a 4 wheeled walker as I couldn't walk . My feet were so painful. My doctor put me on 25 pred for the first week and then reduced to 20 for the next two weeks. I slowly reduced till I got to 10 and then had a flare so went back to 15. I am now on 7 pred. My doctor thought it was PMR but was confirmed when my blood tests returned.  Before the first onset of pain I had not been a sick type of person, and exercised every day ( walking and yoga). I still experience pain but it is certainly not the pain I experienced before Cheers Fiona . 
    • veronica81435
      veronica81435 febes

      Posted

      Hi Fiona , i did walking and yoga , miss it loads. I walk with a 4 wheel walker as get so dizzy and weak . It's good that your down to 7 mg now. I hope your pain goes altogether at some point .  Take care and thank you for your in put , Veronica 
    • Anhaga
      Anhaga veronica81435

      Posted

      Veronica, I believe there are some very gentle forms of yoga that can be done in a chair - would something like that help you?  Also, when I was immobilized by my broken leg a couple of years ago I was told that any kind of exercise would help, including contracting muscles, even attempting to lift the affected leg while reclining in front of the tv.  I'm sure that doing this was really helpful once I could put weight on the leg again and speeded my recovery, so maybe something similar would help you regain some strength?  Just a thought.
  • robin73191
    robin73191 veronica81435

    Posted

    HI, I am 77years old, female. After dental surgery I developed an infection  that was treated at first with antibiotics and then Prednisone (which I believe was a mistake, I should have continued on high dose antibiotics instead of a medication that lowered the immune system) and began to have pains in my hips and arm discomfort at night.  I was okay with pain killers and acupuncture, but when my  SED rate became  very,very high I was diagnosed  with PMR (after 1 and a half years).  I have read that dental surgery can bring on an auto-immune disorder and I am emphatic that is what happened to me because I was a very healthy, active human being and very young acting and looking for my age (ex-ballroom dancer).  HOWEVER, i had an allergic reaction (serious) when I mixed my oral Prednisone with topical Floucinonide and Desonide (for another medical problem). After emergency treatment,  I was tested for allergies  and tested  positive for Tixicortal-Pivolate (SP?).  Now what a mess.  Had to stop Prednisone abruptly and sufferered SEVERE vascular headaches from withdrawal and thought I was going to die or have a stroke.  Started to take massive doses of Benadry and used ice all over entire head and pain subsided.  After a week doctor put me back on Predisone along with Benadryl because he thought I had a cross-reaction to the different oral and topical cortisteroids and just Prednisone alone might be okay (along with Benedryl.  He left the decision to me but also scared me when he said I could lose my eyesight because many patients with PMR develop GCA..  Now have to be tested to determine which cortisteroid I can take either alone or with another and I hope Prednisone is not a drug I can never take.
    • EileenH
      EileenH robin73191

      Posted

      It isn't MANY. One in 6 patients with PMR symptoms go on to develop GCA - but it is usually quite quickly, it is more unusual for it to take a long time although it does happen. Why scare the patient to death? It doesn't achieve anything...
    • robin73191
      robin73191 EileenH

      Posted

      Thank you for your comment.  I agree doctors like to scare you into taking medication.
  • lily58584
    lily58584 veronica81435

    Posted

    I believe mine started the moment I decided to pick up a 50lb bag of catfish food...I just knew I screwed up.  I'm 64 and small.  First I thought it was my rotator cuffs and family doc said it was old age and degenerative disc disease.  I got the diagnosis 8 weeks later when I couldn't walk and was admitted to the hospital.  It was there I had all the test.  I hate it!!  I live alone on a 33 acre farm with 5 animals to care for in a very rural area.   This has changed my life completely.  I'm going to have to relocate to make my life easier.  Want to move to a holistic type town.  I'm wondering if acupuncture, massage and yoga could help along with becoming a vegetarian.  Good luck to you!

    • Anhaga
      Anhaga lily58584

      Posted

      Lily, this is a very old post.  But your story is interesting and I hope you make a new post to tell it to people who may not be following this thread.  It is upsetting to have to change one's life so much, isn't it?  I have enough trouble managing a small house, I can't imagine what it's been like for you.  I'm not sure vegetarianism will help.  I've been a vegetarian (not vegan) for many years, and I still got PMR!  But anything which encourages relaxation should be beneficial, just make sure the people providing the massage or teaching the yoga understand the limitations of PMR.

    • artfingers
      artfingers lily58584

      Posted

      Wow, Lily I know mine also started just from picking up a too heavy boat.  Next day, bamm it started tho it took forever to diagnose.  Amazing how one thing like that can change your life.  I am managing fine now though with prednisone.  I wish you good luck on your journey and keep up with these groups, it helps?

       

  • mjhollywood
    mjhollywood veronica81435

    Posted

    54 years old. Works out evey 5 days a week. I though I pulled a muscle.  Could not walk my glutts were frozen could jut get up

    After sitting  ffor a short time. When sleeping. The leggs would not move.     Went on pred. 15 done to 10.  Now going on Acamira . I work out 5 days a week. No more kickboxing. Just spinning and yoga. And I work 10 hrs a day running around.  Work fir a major airline.   Does diet help doc say no people here say yes!!!any help on the food. And anyone taking the acamira !! Thx mj

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