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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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  • barb30898
    barb30898 veronica81435

    Posted

    I think you have to consider Heath history.

    I believe my PMR to be related to a general breakdown of the immune system, and age.

    I was an 'accident waiting to happen'.

    To clarify:  lymphoma, then breast cancer,then Hashimotos (thyroid) then chemo, and immediately following, an almost fatal auto accident.

    Then Sarcoidosis popped up.

    finally, one day, I got general aches that felt flulike (head, neck, shoulders,butt, legs aches)

    They got worse. Doctors didn't want to deal with me, 

    i used a wheelchair, in the end

    Diagnosed many miles and doctors, away from my home, a month later

    20 mg Pred, and within 10 minutes, I was walking out the door, with no pain, whatsoever.

    still can't (or won't) figure out my limitations, so I flare.

    currently back up to 4mg. And learning from you guys.

    • veronica81435
      veronica81435 barb30898

      Posted

      Hi Barb , yes I think your right there . With all that you went through took a toll on your body for sure, gosh you have been through some bless . I know how you feel when you say Drs didn't want  to deal with you. I also used a wheelchair before steroids, they worked within half an hour for me and I was on top of the world that day  . Before that I Kept pushing the Drs to help . 

      Even on on my wedding day I was partly in a wheelchair and am annoyed

      that Drs would not help me before then. 

      Im glad to hear that your down to 4 mg . I'm learning from you all too. It's been just over six months that I statred steroids but feeling pain creeping back at 12 mgs . Take care and Best wishes , Veronica 

  • ingo
    ingo veronica81435

    Posted

    Hi Veronica,

    Mine started at age 68, I think precipitated by several stress events.  Selling my business and having my elderly father-in-law move in with my wife and me

    • veronica81435
      veronica81435 ingo

      Posted

      that's big changes Ingo . Must of felt strange to sell your bussniess as owning a bussniss is like close to your heart . Must be stressful for you both to be looking after your father in law. How you doing now ? Best wishes , Veronica 
  • pauline36422
    pauline36422 veronica81435

    Posted

    i am convinced  mine started with a shock.  4 days after i strted with groin pain, then all te other pain kicked  in  4  years back.   but no one else is coming up with  the shock theory.  still slowly lowering to 4 mg
    • tavidu
      tavidu pauline36422

      Posted

      Hi pauline. I think any kind of trauma to the body could be classed as a shock, in my case my cough got so severe I am sure my body found it hard to deal with. I felt that I had a hole in my throat and had to try to sleep sitting up. Keep up the good work on lowering the preds and good luck for the future.
    • veronica81435
      veronica81435 pauline36422

      Posted

      shock can put a lot of strain on the body. I don't  underestimate that .. Seems that most people on here had things leading up to the disease . Best wishes , Veronica 
  • Buffy61
    Buffy61 veronica81435

    Posted

    Pain in my upper arms, shoulders and neck. Sore knees but as I had just had knee replacement put that down to recovery time. Aching and stiffness in the morning...took me about twenty minutes to get moving. Arms hurt so much just moving myself around the bed and getting in and out of my high car. Pain killers I was taking for my knee pain didn't touch the arm and shoulder pain. Also blurred vision, sore face and jaw, tender temples...no real headache tho.
  • ceciledian
    ceciledian veronica81435

    Posted

    Hi, I am 55 and PMR started May 2015. Symptoms were rapidly increasing pain in hips and shoulders, would wake up at night unable to move. Getting out of bed and dressed near impossible. Severe pain would last until late afternoon and stiffness never left. I had no physical ailment or event prior to onset, took no prescription meds, and was very active and eat well. The only stress event was having to put my 17 year old dog to sleep the same month symptoms started, an expected event. I had chronic but manageable bursitis in shoulders for 30 years prior to the PMR. Attempted to use NSAIDs when PMR started but it didn't touch the pain. Started 15mg pred in July 2015 and responded quickly. Down to 7mg now and hope to kick this out of my life by July 2016. :-)
    • veronica81435
      veronica81435 ceciledian

      Posted

      Aww bless so sorry about your dog . I love dogs, I still a have dog  . I lost one in 2011 a few months before the dog I have now, same year as my mum died and I moved so a very mixed up year . Had to keep strong for my father which I felt a strain. I have had bursitis and frozon shoulder in both side for about 8 years now . So that's interesting that you say that. Mines never stopped playing up after 3 ops and 12 steroid injections. NSAID does nothing for me also and now I have become allergic to them . Good luck with your lower dose of preds . Take care, best wishes , Veronica . 
    • Anhaga
      Anhaga ceciledian

      Posted

      Good luck to you.  I was hoping for the same (started in June at 15 mg, down to 7 now) but I think it's not as easy as that.  My aim is for December, 2016, but I have an uneasy feeling I may be in this for the long haul.  Going back to the physiotherapist this week for more low level light therapy which really helped my get to 7 fro 8, but I've had a bit of a break from that while she gets me to do new exercises for my back and neck.  It will be interesting to see if the light therapy is helpful this time.
    • EileenH
      EileenH Anhaga

      Posted

      Don't set your hearts on a date to be off pred - it will only lead to disappointment if it doesn't work. PMR came when it wanted to, it will go when it wants to and nothing you or anyone else can do that we know of will speed that up. 

      Some doctors tell patients PMR goes in a couple of years - no-one told my PMR that , it is still here (I think) after 11 years, 6 of them on pred. On the support groups and forums we have people who were told that who are distraught and feel they have failed when it didn't go away - we are the people who have to mop up the tears. 

      Concentrate on slowly getting to the lowest dose that works - if it is under 7mg that is low and the side effects aren't too serious. And then enjoy the quality of life the pred gives you.

    • Anhaga
      Anhaga EileenH

      Posted

      Thanks, Eileen. Aiming for a date is more of a psychological carrot to keep unhappiness at bay. I know it is at best a moving target!
    • EileenH
      EileenH Anhaga

      Posted

      As long as you remember that - and don't end up in a decline because it hasn't worked!

      My psychological carrot is feeling the best I can manage - and at the moment it's pretty good I think, PMR-wise at least!

    • Anhaga
      Anhaga EileenH

      Posted

      I know.  If i didn't seem to be developing pred-related side effects I'd be more content.  Not the aesthetic ones.  I've got elevated blood sugar and increased ocular pressure.  Just more things to distract the mind from whatever the true purpose of life is.  Oh well.  Sigh.
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