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Health Problems After PMR

Posted , 10 users are following.

merrymac
merrymac

Hello,

Thanks to all of you for the assistance and reassurance your posts provided to me as I travelled my PMR journey.

Over a five year period, I had three bouts of PMR - on prednisone for a year, off for several months, hit again, back on pred, off again for several months, then hit with the third whammy.  I've now been off pred for a full year, have no PMR pain, and my blood tests are normal.  Hallelujah!

However, I am left with a few health concerns and don't know if they are related to my PMR or not, and I'm hoping someone from this group may have dealt with similar symptoms and may be able to help me out.  I have a very tight chest which makes each breath an effort and gets worse with strenuous activity.  This problem started before I finished with  prednisone.   I'm still hit with with bouts of sudden-onset fatigue, and suffer from hot flashes (not related to menopause - I'm well past that), usually occurring in the wee hours of the morning. I also have frequent  drops in blood pressure (eg 83/42) which result in light headedness.

I've been thoroughly checked out by both a respirologist and a cardiologist - lung function and sleep apnea tests, EKG, stress test, echo stress test, and cardiac catheterization.  Very minimal things detected but nothing to worry about, and nothing to explain my health problems.

Other than these concerns, I'm slim, fit, eat well, exercise regularly, don't smoke, and drink only a glass or two of wine per week.  Can't think of any lifestyle changes I could make to improve my health.

Doctors aren't sure what's causing my problems, and I'm hoping someone from this group may have dealt with similar concerns and found an explanation.  I will appreciate any leads you can offer me to regain my health.

1 like, 16 replies

16 Replies

  • Guest
    Guest merrymac

    Posted

    I read what you wrote twice and two things came to mind. First, the after effects of PMR and pred may be much longer lasting with some than with others. Second, so much is age related...don't tell us your age! but I find weird stuff happening about every six months now that I am over a certain decade marker. It sounds like you have been thoroughly checked out. Hope the worst symptoms get better soon, Ann11195
    • merrymac
      merrymac Guest

      Posted

      Hi Ann, I should have included my age - it is 74.  I agree with you that "weird stuff" happens as we age!  I don't feel that my present health concerns are related to age, but I do wonder if PMR is responsible even though all the tests are good.  Time will tell!
  • EileenH
    EileenH merrymac

    Posted

    Is the tight chest and breathlessness all the time or just sporadic? Was the EKG at least a 24 hour Holter or just a one off?

    It is perfectly possible you have another autoimmune disorder that isn't producing PMR symptoms but doing something else. Mind you - if you have such low BP that will do all sorts of strange things!

    • merrymac
      merrymac EileenH

      Posted

      Hi Eileen, the tight chest and trouble breathing is every breath, 24/7.  Not fun and very tiring.  The EKG was a "one of" and not the Holter.  I think I have something happening that is neither heart nor lung related - possibly another auto-immune problem.  I've been treated for Lyme disease with no change in symptoms. The elusive diagnosis!
  • lodgerUK_NE
    lodgerUK_NE merrymac

    Posted

    One thing springs to mind, have you had a synathecen test?

    Just to see if your adrenal glands are up to speed.

  • angela43016
    angela43016 merrymac

    Posted

    Hi, not sure why you are feeling this way and it must be frightening for you. The only thing I can think of is that you may be worrying about something that might be causing these problems. I know that when, even subconsciously there are fears in my mind that this is how they present themselves. I hope you feel better soon x
    • merrymac
      merrymac angela43016

      Posted

      Hi Angela,  I agree with you that our worries can cause physical symptoms, but I feel quite confident that this isn't an issue with me, and not what causes my tight chest.
  • kathy67492
    kathy67492 merrymac

    Posted

    I can identify with your feelings, altho I am still in the midst of my pmr journey. I am 68...I blame everything on PMR and/or the prednisone!😊

    Even have a friend who thought she had PMR because of our similar aches and pains (she was checked out and does not have it). Hard to distinguish. Your post is a good reminder to me that when the PMR leaves me I will still have issues. Hope most of your symptoms are residual pmr!

    • EileenH
      EileenH kathy67492

      Posted

      "she was checked out and does not have it"

      On what grounds was she told she didn't have PMR? There is no definitive trest for PMR - if the aches and pains were so similar she could have it. Having normal blood tests means nothing - about a fifth of patients don't develop raised ESR/CRP.

    • kathy67492
      kathy67492 EileenH

      Posted

      I knew I didnt clarify that very well! My friend needs knees replacement and is biding her time...also arthritis. She is never tired, goes a million miles an hour, one activity to another...spin class, tennis, pilates, etc. No pain in the neck, shoulders or groin. She went to my rheumatologist. I have some arthritis too; it can be very painful...but, in my opinion, nothing like PMR.

      Thank you Eileen.

       

    • merrymac
      merrymac kathy67492

      Posted

      Hi Kathy,  Like you, I tend to blame everything on PMR and prednisone even though I've been off the medicine for a year, have no pain, and the blood tests are fine. Probably for the rest of my life I'll continue to do that!
  • Whisper2003
    Whisper2003 merrymac

    Posted

    Have you explored the possibility of an allergic response to something? Just a thought as I think the PMR and pred seem to change how our bodies respond to things.
    • merrymac
      merrymac Whisper2003

      Posted

      Hi Whisper,  I hadn't thought of an allergy - not sure where i would start to check that out.
  • julian.
    julian. merrymac

    Posted

    I'm cautious about "me too" but it was "kinda nice" to find your post about the chest tightness and breathing.

    I have mild asthma that I attribute a bit of chest pain / stiffness to. Haven't needed seretide since 2007 and ventolin about once a year. I also never smoked, not overweight (just heavier than I liked), lots of "steps" each day, but lost a lot of fitness with the PMR.

    For unrelated reason gp suggested coronary calcium count. Which led to stress echo test which led to angiogram. This is my second day after stent for fully blocked artery.

    Between stress test and stent I did have a couple of days of really struggling for breath. No matter how deep I tried to breathe it was never enough. Horrible feeling.

    The stent seems to have done its job. The seretide and ventolin are helping and I'm breathing normally this morning.

    But still got the bit of chest pain and stiffness, to a bit of puzzlement for the doctors.

    It never ends though, I feel the beginnings of sore throat and chest infection, which normally knock me about. Just what I needed.

    Rehab from stent will be interesting as I try to juggle activity, heart, pmr and pred.

    • merrymac
      merrymac julian.

      Posted

      Hi Julian, It's comforting to know that someone else with PMR has the chest/breathing problems and understands what I'm dealing with. You hit the nail on the head with your expression "horrible feeling".  I'm not alone!  In my case however, the angiogram came out fine, and no stent was needed.  When I think "poor me", I always take the time to appreciate that there are people dealing with much more serious and painful health problems than I have, and I just get on with keeping on.
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