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Painful heavy calves

Posted , 7 users are following.

Bethune
Bethune

Hi, I’m a 68 F and I’ve had PMR for 8 years or so, and once diagnosed functioned very well with prednisone.  Other meds were tried to get me off Pred but none worked .  I was as low as 5mg last July but then had a bad flare and was all the way back up to 30. 😔

I’m using dsns and I’m  down to 9 1/2–10mg.  But several months ago my feet became itchy, tingly and burning, and more bothersome my calves ache and throb, sometimes tingle.  They feel so heavy I tried a diuretic, it helped a little, but not that much.  I got off the diuretic  because they are not good long term. These calves ache so much they wake me at night.  I play tennis and soccer several times a week but all day long my calves tingle throb and hurt.  Any thoughts?

0 likes, 10 replies

10 Replies

  • EileenH
    EileenH Bethune

    Posted

    Have they checked the blood flow to your feet? 
    • Michdonn
      Michdonn EileenH

      Posted

      I think someone should hire you as a medical detective! ☺️
  • Bethune
    Bethune

    Posted

    Follow up:  hope this might help others:  I think my heavy legs /calves /sore feet were not a side effect of prednisone, but due to not enough.  After reading other stories I increased my prednisone and it helped dramatically. I am discouraged that my flares now include calf and foot pain, but am relieved it seems to improve with increased prednisone and isn’t something more serious.  

    I’m interested in the experiences of others with lower leg pain in addition to the more typical pelvic area and shoulder area pains.

    • EileenH
      EileenH Bethune

      Posted

      I still think you need the blood flow in your legs and feet checked - if it is due to narrowing of the arteries because of inflammation the pred will help it. Just a thought.
    • Bethune
      Bethune EileenH

      Posted

      Yes!  I agree.  

      Thanks for your input!

       I’m having an appt with a top vascular doc next week..  he can run al the tests.. also seeing GP for blood tests to check on pre diabetes , or any other contributing factors. 

      Had gotten from 30 to 9 1/2 and sadly am back up to 20 with calves and feet still very uncomfortable( but better)  and buttocks and hamstrings burning and hurting  too.  So PMR is involved for sure, but perhaps other factors as well.  

    • EileenH
      EileenH Bethune

      Posted

      Has anyone suggested piriformis syndrome to you? That can also cause all the symptoms you mention. It is quite common alongside PMR.
    • Bethune
      Bethune EileenH

      Posted

      Thanks— I’ll mention that to my docs, and research how to diagnose it as distinct from PMR.
    • Bethune
      Bethune EileenH

      Posted

      Follow up to other response.   But because it is bilateral and also in the pelvic , typical PMR area, I’m thinking it probably is not piriformis .. but always worth mentioning to my docs.  My friend who is a  Doc says it is uncommon and hard to pinpoint.  She is sufffering from bad sciatica but with no back pain.. but she does not have PMR. Thanks for all your ideas.  It all helps!
    • EileenH
      EileenH Bethune

      Posted

      I have myofascial pain syndrome - a variant in some ways, and that can be bilateral. Piriformis is just one muscle affected, MPS can affect all the back muscles.
  • Bethune
    Bethune

    Posted

    Thanks for the seeing a vascular specialist recommendation.  

    In a few moments he was able to diagnose that I have “ calf muscle pump dysfunction. “  Multiple knee surgeries

     ( 2 ACLs and 2 meniscus) arthritic diseases ( RA and PMR) , and long term prednisone, are causative factors. 

    Good news, it does not lead to stroke or heart attack, or my leg falling off!!

    Bad news there is no real treatment.  Support hose , staying active, and staying thin help.  I can continue to have coffee and my one cocktail at night😊.  He said given my causative factors he was surprised I wasn’t worse. 

    Guess this type of thing is why the docs want us to get off prednisone.. Knee replacement might help structurally, which would improve my gait, which would improve blood flow back to the heart.  Relieved I’m not in danger, depressed I have one more chronic pain to deal with.   So if you have heavy painful calves you might want to check with a vascular specialist. 

    At least I didn’t have to see 4 docs and have the first 3 tell me I’m basically fine, and make me feel like a hypochondriac. 

    That was curative in and of itself!

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