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Question regarding morning stiffness....

Posted , 11 users are following.

marthatidbit
marthatidbit

I previously posted that my rheumatologist doubts this is PMR due to my age, 56, and lack of elevated inflammation markers.  My symptoms seem to be spot on, which is why my GP referred me to rheumatology.  After following this forum for the last month, I tend to agree with my GP - my symptoms seem to be match, except for the morning stiffness. 

While I do experience some extra stiffness following inactivity, I don't feel that I have worse stiffness and pain in the morning which eases in an hour or two.  Mornings seem to be best for me.  My stiffness gets worse throughout my busy day, and pain increases the more active I am.  Or maybe the pain gets worse, which makes me tighten up more?  Whatever, I am best in the morning, deteriorating throughout the day.  

Does this sound like PMR to any of you?  Have any of you experienced this?  Your feedback is appreciated.

Thanks,

Martha

1 like, 18 replies

18 Replies

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  • audrey80537
    audrey80537 marthatidbit

    Posted

    Hi Martha

    I've had PMR FOR A LITTLE OVER A YEAR.

    At first my blood markets were normal and several months later elevated. Before taking pred I had excruciating pain in the morning before and after getting out of bed. It wasn't stiffness but real pain

    After pred like you my best time is in the morning. I have lots more energy and less discomfort. Very seldom have pain from PMR but pressure in my lower back. I also have some OA so any pain I experience I think comes from that. It's hard to tell the difference.

  • Anhaga
    Anhaga marthatidbit

    Posted

    I have to say I've questioned that "morning stiffness" thing.  I had great difficulty getting out of bed, it's true. But I also found it painful getting out of a chair if I'd been seated for even a few minutes any time of day, or up off the floor if I'd attempted to do increasingly difficult exercises in the evening.  I got so I began to think I'd have to give up driving as I couldn't turn my head enough to see out the back window.  I had trouble washing my hair for heaven's sake.  I was stiff, but only because the pain made it impossible to achieve full range of motion, and it certainly was never limited to an hour or so after getting up in the morning.  I honestly can't remember if it was worse in the morning.  I think it was the same level of pain after any period of inactivity.
    • Tastyron
      Tastyron Anhaga

      Posted

      I've not really had the morning stiffness/pain. Same level of pain throughout the day. Inactivity makes it worse whatever time it is. Although since this weekend I've had a bit of a flair and it is worse in the morning so go figure to coin an American phrase.
    • danielle_65358
      danielle_65358 Anhaga

      Posted

      Anhaga,

      Do you still experience pain and stiffness after inactivity?

      It had disappeared after taking first dose of Pred but since a drastic reduction in March I can't seem to feel the same effect.

      I'm active but once I sit for a period. It's like my thigh muscles have gelled and I have quite a bit of trouble walking. Thx

    • Anhaga
      Anhaga danielle_65358

      Posted

      Danielle, not really.  I am getting rather old so I don't expect to spring up the way I could before.  But the pain and stiffness of PMR are very different, very debilitating.  That sensation of the muscles simply not wanting to work, and hurting.  When I feel that returning I know I'm reducing my pred too quickly, but it hasn't been a real a problem for me since I started the dead slow nearly stop reduction method a few months ago, at around 10 mg, catching an incipient flare before it got out of hand.  Why did you have to have such a "drastic" reduction?  Your description does sound like a bit of pmr; I hope it isn't getting worse.  I believe the term of muscles gelling is in fact used to describe PMR and some other inflammatory disorders.  Eileen wrote about that, I think, a few weeks ago.
    • danielle_65358
      danielle_65358 Anhaga

      Posted

      Thank you for responding. After six weeks on 20mg I had relief of most of the symptoms. I had developed a bad headache, high BP, and gained weight especially in my face. My Rheumy cut my dose to 10mg. I followed his instructions. 😏

      After what I think were withdrawal symptoms subsided, the pain in my shoulder and back of thighs and fatigue have been ongoing. after a dr visit last month with these concerns he said my sed rate was down to from 42 he suggested Cymbalta. Umm..no!

      I bumped up to 15 and am now at 12. Now I'm not sure if I should reduce any further or go back up again. Maybe my expectations are too high.

      Maybe I'm doing too much. I know I'll never feel as good as those few weeks at a high dose. But , that brought its own set of problems. All I know is, although I'm exhausted and frustrated, I'm very grateful that there is a way to manage this. I just haven't found the "sweet spot".

      Thanks I know I rambled on. 😊

    • Anhaga
      Anhaga danielle_65358

      Posted

      Daniell, I wonder....  Do you think it would have been a good idea to stay at the higher dose for a bit longer?  There isn't much point taking pred with all its baggage if you aren't getting the most benefit as you can.  This is just my thought and others with more expertise should be able to advise better, but I think both initially and if you've had a flare it is a good idea to stay at the comfort level of dosage for at least a week or two (some authorities say a month or even more, but I think that's a choice) to make sure the inflammation is really cleared out.  You'd go by your symptoms, not your blood readings.  Then a slow (very slow) taper could trick the body into thinking it's still getting its full pred fix.  I'd hate to think that you've got that discouraging "gelling" if a bit of tweaking of your dose and taper could significantly reduce it.
    • danielle_65358
      danielle_65358 Anhaga

      Posted

      Thanks. I think you're right. I do hesitate to go back io. But, like you said, a lower dose is pointless if it's not clearing out the inflammation. I really appreciate your thoughts. I hope you have a great day.
  • sandra28555
    sandra28555 marthatidbit

    Posted

    I too have it easier in the am. By afternoons my back pain kicks in and I can barely get around. I don't believe there is a mold for each disorder as we are all different. The itching is one of my biggest challenges. Nothing seems to even touch it.
    • Anhaga
      Anhaga sandra28555

      Posted

      Just had a thought - do you think you might be allergic to one of the filler ingredients in your medication?  Could cause itchiness.
    • Charlieschoc
      Charlieschoc sandra28555

      Posted

      I have itching my go days it's a side effect of pred. A friend suggested I try an anti hystamine. I do find it helps but it's another pill to the long list of others we all take. Maybe worth asking your go his take on things though x
  • ptolemy
    ptolemy marthatidbit

    Posted

    Before diagnosis I did not have stiffness as such, like some of the others I had intense pain, in fact stiffnes did not have a look in. When I saw the rheumy he said "You have stiffness in the morning don't you, of course you do" and did not give me time to reply. He then went on to tell me that he would prescribe steroids and I would be training for the Olympics within a week.  I did have very high blood markers which helped the diagnosis, but around twenty per cent of people do not have raised CRP and ESR, which does seem to cause a problem with some doctors into realising one might have PMR. 
  • sandra28555
    sandra28555 marthatidbit

    Posted

    I am trying to eliminate as many as possible. I just keep thinking it is something like that.
  • sandra28555
    sandra28555 marthatidbit

    Posted

    Yes I am trying very hard to stop as many as possible but the itch goes on. Darn I feel so frustrated.
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