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So PMR sufferers usually have swelling in arms and legs?

Posted , 11 users are following.

kara33963
kara33963

Hi Everyone.

I’ve been reading through this site for a few weeks since my GP gave me a “possible” diagnosis of PMR. I will have my first Rhemy appointment later this week and am hoping to get some firm, or clearer idea of what is wrong. I’m a healthy 56 year old woman, usually active by swimming, strength training and walking. About 3 months ago, things changed where the normal stiffness and soreness after a good workout lasted 24/7, even if I’d skipped a few sessions!  At this point I am stiff and sore all the time and the swelling in my forearms  is incredible. They are tight and tender, and if I sit for more than 20 minutes, my calves are the same. I do still walk about 20-30 minutes each morning followed by stretching exercises in the pool. I am still doing strength training, but at a much reduced level to accommodate the pain. The stiffness seems to go away, not totally, but returns once I sit down to work. Sleeping is almost a joke since I get no more than 1 1/2 hours at at time, so I’m exhausted. Any thoughts? And thank you!

0 likes, 11 replies

11 Replies

  • celia14153
    celia14153 kara33963

    Posted

    Hi Kara - sounds very like Polymyalgia - inflammation of the joints. I've always been active and when I started to feel this pain thought exercise would make it better but it made it worse, and I couldn't understand it. I did a yoga session and felt that I had been in a car crash! Pain round the shoulders and neck, forearms, hips, groin and back of the legs. I had to ease myself out of the car and began to avoid going anywhere. Physio didn't help nor massage, and in the end it was my chiropractor who mentioned Polymyalgia.

    Prednisolone does work and is often used as a test for the illness as diagnosis is tricky. If you get relief then you can continue to take it which of course is wonderful - it gives you your life back! The only thing I would say is that GPS often view it as a wonder drug and tell you that you should be pain free within 48 hours on 15mg. In my case I needed 25mg for a week before dropping to 20mg for another week before I got relief. Now I'm on 12.5.

    Walking is the best  exercise and stretches gentle and not for overlong. You'll need rest as well as activity, take your time to settle in. Pred is life supporting and gradually you can reclaim what you most enjoy - it just takes adaptation and time. Good luck! Do let us know what your Rheumy says.

    • kara33963
      kara33963 celia14153

      Posted

      Thank you so much Celia!  It will be a journey, i'm sure, but it's a relief to hear back from people about my specific situation.  How long have you had this?

    • celia14153
      celia14153 kara33963

      Posted

      I was diagnosed in June 2017. I am taking it very gently using the slow method advocated on this Forum. I’d be very happy to avoid flares! 
  • andre68439
    andre68439 kara33963

    Posted

    Hi Kara. Yes the soreness sure sounds like PMR. The swelling is not always present. I had PMR for over 8 months before diagnosis. I deteriorated rapidly and had the bi-lateral soreness of the shoulders, legs, back, hips, 20 lb weight loss, anemia, night fever with sweats, I was a mess but no swelling. After about 24 months on a Prednisone reduction regimen I went into remission and stayed clear for almost 10 years. Then all of a sudden I got swelling in my ankles (pitting edema), tight and sore calves, and wrist pain as in carpal tunnel syndrome. Lab work revealed a relapse of PMR with new symptoms and none of the old ones.  Coincidentally like you I was also a workout enthusiast. I was a distance cyclist and gym rat. After I went on Prednisone I returned to my workouts and cycling at a modest level. Be patient and taper off Prednisone slowly as you will read in postings on this site. PMR will run it's course no matter what you do. Don't get discouraged, 20% to 40% (depending on the specific study you read) will go into remission in 18 to 24 months (like myself). Many more will take 3 to 5 years and some up to 10 years or more but many of those appear to have other concurrent health issues, which may or may not be a factor. So stay positive. Once on Prednisone you will be surprised how quickly you will feel better. Best of luck.

    • kara33963
      kara33963 andre68439

      Posted

      Thank you Andre. Can I ask what lab work you said confirmed you had a relapse?  Most of my blood work has been normal except slight elevation in CRP and white cells. Slightly low protein levels. I’ve had these tested multiple times in the last 3 months with little change. 
    • andre68439
      andre68439 kara33963

      Posted

      Kara, with my first onset both my SED rate and CRP were very elevated. With my relapse my SED rate was nearly normal but additional blood work showed my CRP was very elevated. Based on the literature and posts it is apparently possible to have normal SED/CRP and have PMR. However, in that case, other conditions which present with similar symptoms have to be considered by your MD/Rhumatologist such as the one Eileen sent you. 
  • EileenH
    EileenH kara33963

    Posted

    Look up RS3PE syndrome which can often be found alongside PMR-type symptoms.
    • Danrower
      Danrower kara33963

      Posted

      Hi Kara,

      I have RS3PE, and/or PMR and have had 2 major bouts.... One at 54, one at 64 years old. I'm 68 now. I have 2 Rheumatologists (it's complicated) the challenged one denies that I have RS3PE cause the swelling is not extreme, but she also denied my inflammation and my initial self diagnosis years ago because of seronegative blood work. 

      The good news, if there is any, is that the treatment is the same, low dose pred. 

      I think RS3PE and PMR are similar, if not the same affliction, with different manifestations.

      FYI, I am pred free now, but I think that this dark visitor may see me again, after significant mental or physical stress.

      A few times, when I felt the oncoming inflammation, I would start 3 mg pred/day, in an effort to prevent a "spiraling up" of PMR/RS3PE autoimmune symptoms. I read an article that suggested that may work. Seemed to for me, but who knows, with the placebo effect, and all that.

      Best of luck to you on this path.

  • Michdonn
    Michdonn kara33963

    Posted

    Kara, you might be joining our journey. I been a very active person all my life and PMR stopped me in my tracks. After blood test, results showing high levels of inflammation and starting on Prednisone for a month I started to feel normal. Prednisone has allowed me to return to my normal active lifestyle. Sure on high doses it does have it side effects, but they are less as you get to lower dosage. Good luck, stay active, positive and try to smile. ☺️
    • kara33963
      kara33963 Michdonn

      Posted

      I am encouraged by all of the comments and look forward to getting this behind me in some fashion. I am an all in kind of girl so I will do my part 😊

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