How did your PMR start ?

Posted , 32 users are following.

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 😃

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  • Posted

    Mine started at age 66.  I worked as a tennis official and noticed, in March, that I had pains in my shoulders and back and didn't have the energy and stamina that was normal.  Gradually the pains went to wrists, ankles and knees and stamina was getting worse and worse.  It took until July for the doctors to diagnose PMR and put me on pred.  Took very little time for the pred to releive me of the pains but the stamina, energy, vision problems, etc. made me quit working by the next March.  
    • Posted

      Aww not nice having to quit work over illness . Is yours any better now ? 
  • Posted

    I'm not sure if a few prior events were contributing factors, but in May I had an inflamed bursa, finally relieved by depra-medrol injections, pain after  5 mile 3hour kayaking in one position, went for PT, death of a brother 9/1 followed by sister's anger taken out on me, then 9/10 we flew to Spain for a 2 wk tour, on 2nd day I took a serious fall, terrible pain for which I took naprosyn 550mg. twice a day to get through the tour.  Many side effects as large amount of pitting edema in feel and ankles.  Returned to USA after tour and a 7 hour cramped plane ride, still in pain from fall. Sister still giving me a difficult time.   Then, I couldn't move my arms without terrible pain, I couldn't reach for anything, I could hardly get dressed, couldn't get out of bed, or into bed, couldn't get off the toilet, I could not function, had to cancel MD appts. because I would never be able to get in the car. Called my MD who ordered lab tests for the next day, also ordered the 6 day prednisone pak to start after the lab work the next day; he said he thought I had PMR!  The lab work was basically OK, but after taking the doses of prednisone, I became so much more functional by the evening, like a miracle.  I began to feel stiffer by the last day of the pred when I only had 2 mg.   The next day I was dx and started on 40 mg. 1 month, now reduced to 30mg. until March 30,  and fully functional!    Along with the precipitating factors above, I attribule mine to enormous amounts of stress.  I do experience several annoying side effects of the pred, but I can deal with that since I'm able to function and would never want to go back to the   pain, stiffness and discomfort. I feel fortunate that I got a fairly prompt dx!
    • Posted

      poor you , I had inflamation of the bursa and on both shoulders bone spurs 3 ops later pain was no better. About 4 years back so mine must of been coming on for a while .i got the side effects of the pred too, I got the moon face now. How are you now ?  Thank you for your input . 
    • Posted

      I'm doing very well on 30 mg. pred., no pain, just occasional cramping of hands.  Dose will be adjusted after March 30.  Myi face has filled out, I'm watching my weight eating only meat, eggs and veggies, and dropping some ;of the excell weight I'd put on, no carbs, bread or such, at least for now.  Also doing interval walking.  El
  • Posted

    I know no reason why my post was moderated.  They should re read it and then post it.  El
    • Posted

      Me neither - but the computer latches on to typos or parts of words or even perfectly innocent words with other connotations! I just wish they would give you the chance to re-read the post...
    • Posted

      Me too, especially when you go to all the trouble of organizing it and writing it so it's understandable and chronological!
    • Posted

      I'll try again!......In May I had an inflamed hip bursa, much pain, finally a depra-medol inj. with relief; August was a 5 mile 3hr kayak ride and me in one position causing much pain. Sept. 1 my brother died and there was much conflicg and anger with my sister; Sept my husband and I took a tour to Spain, I had a serious fall the second day & took 550mg. naprosyn twice a day to get throught the tour, much pain.  While there I got an awful cold, coughing and choking.  More stress w/ my sister after returning.  Then early October I had to go to court to testify for my dental malpractice suit. Still having pain from previous events.  End of October I suddenly stiffened up, couldn't move my arms, could hardly get dressed, so hard to get out of bed and in bed, couldn't get off the commode, had to cancel MD appts. because I wouldn't be able to get in the car.  Called my MD and said I did not know what to do, should go to a pain clinic or what, I was becoming a cripple.  He ordered lab tests for next day and a decreasing 6-day prednisone pak to start right after my lab work was done, and said he thought I had PMR.  I started the prednisone the next day right after the lab, took a total of 24mg. that day, and by the evening I was functioining. At my appointment the following week, I said the discomfort was starting to return  (I had taken 2 mg. the day before).  He confirmed the dx and started me on 40 mg. pred for 1 month, then decreased to 30 until the end of March.  I did get a fairly quick dx and am functioning very well.  I do believe that stress was the trigger, my bodywas trying to tell lme something.
    • Posted

      It's amazing how quick the preds kick in isn't it. I'm on a lower does and can feel the pains coming back Dr said take pain killers but don't like taking them too much . 
  • Posted

    Searing pain in my shoulders/neck and hip region came on suddenly one night very close to my 65th birthday.

    Six months prior to that I had a couple of falls, doing damage in both those areas which I went to a Chiropractor for treatment.

    In the months before the onset of pain, I had developed a never ending cough I could not get rid of. Then daily 'old man phlegm' arrived

    I was aware of rapidly dwindling energy levels for at least 6 months before the onset of pain. In hindsight I realise I had been fading away mentally and physically for months.

    Mentally I was in a good space for a couple of years prior to PMR

    Physically I was working out of doors in good clean air. I have had Fibromyalgia for 19 years, but had learned how to live with it.

    I had never had a flu vaccine previous to the onset of PMR. My Dr did convince me to have one this year, but it was after PMR diagnosis.

    Good question Veronica

    • Posted

      seems yours started with a virus too. They put me down as having fibromyalgia but as soon as I went on pred steroids most of the pain went. Their very quick to fob people off with fibromyalgia aren't they . Thank you for your in put . 
  • Posted

    PMR is not a virus. It is an autoimmune dsorder that in my opinion is triggered in the gut. For what reason i don't know. Could be diet?.

    Why do four times as many women get as men.?

    At 63 i came back from shopping and it seem to hit in half an hour. Lay in bed for three days in agony. Couldn't even get to the doctor. Called ambulance and had to crawl up the hall on hands and knees to get to stretcher.

    Started to Pred two years ago 50mg per day. Down to quarter of mg per day.trying to make the big step and get off pred. Too scared.

    • Posted

      I agree.   If this was an open forum there would be thousands of people who have had colds/flu recently that would be worried sick about getting PMR/GCA.  Do women get more colds, etc than men?  Is it only very active people who get this pesky illness?  Is it diet/environment ?  Genes?

      There is no answer to this.

       

    • Posted

      All of the above!

      I think that actually it is active people who notice it most as it affects their normal lifestyle more than it does that of an elderly lady who spends a lot of time sitting and knitting or reading. Until relatively recently it was simply put down to aging - you got rheumatism as you got older and some got it worse than others.

    • Posted

      I am "elderly" 73 and there is no way I could have attributed this to just "aging". I felt really sick in that I couldn't turn in bed, get up off the loo etc, etc. I was ready for some one to shoot me if the doctor couldn't help me. It happened, one day, where the shoulder, hip, knee symptoms crashed on me. 

      My husband is an active 81 with knee arthritis and an old shoulder injury which, in no way, resemble PMR.

    • Posted

      That's fair enough - but not everyone develops PMR overnight, it can creep up over months, and it is not always totally crippling. I managed to get about for over 5 years, albeit with some difficulty - and all the GP said was "what do you expect, you are getting older?". That was in my early 50s...

      But for the last 20 years or so it has been ME or CFS or fibromyalgia - or depression or somaticism - that provided the labels for younger patients. And probably severe LORA for older ones - and that can also present suddenly.

    • Posted

      Late Onset Rheumatoid Arthritis.  Myalgic Encephalomyelitis.  I do not know wht ME actually is, but I guess LORA is self-explanatory; I understand that RA usually affects younger or middle aged adults, or sometimes even children, whereas PMR usually affects older adults.  
    • Posted

      Certainly. reading this forum. it seems to be people who have been very active in one way or another, and also people who have exterienced just one too many crises which tipped them over the edge.  Maybe the modern lifestyle with electric lighting, the ability to travel and communicate vast distances and basically never stop is contributing to these diseases.  We never give ourselves time to recuperate from one day's activity to the next.
    • Posted

      I know what you mean about coming off of them, I cannot get below 12 mg.

      I've always had a great diet and vitamins as my immunity has never been all that great though so try and help myself . We grow some veg and have a good verity of foods. 

      Mines me hit me quick and hard too . Scary isn't it . Has your pains gone even on a lower dose ? Mines has come back on a lower dose but Dr told me to take pain killers but also the stiffness has come back even after pain killers have kicked in ! I'm on 12 mg . Thank you for your input . 

    • Posted

      aww poor you , hit fast and hard then !  I know what you mean because with PMR symptoms it effects the muscles and energy gets wiped out .  Thank you for your in put . 
    • Posted

      I have had ME on and off for 20 years! It wipes you out.  I think that's part reason why it took 2 and half years to say that I have PMR it's lucky that I had steroids for chest infection as they never of digonoised me with PMR . I even had time in hospital which they thought was a stroke and they didn't click then either

      . Like you say it's older people that get it when mines started at 44 ish even before then as had pain in shoulders neck and hips for a long time . 3 ops on shoulders for frozen shoulder . They said I was too young to have it . 

    • Posted

      Your right there , mines started early in my early  forties .poss earlier as had frozon shoulders which never got better when I was 38 . I use to be active  

      go hiking and long walks with my dog . 

    • Posted

      I had ME for years. That's why it took so long for them to relies it was something more . But use to keep active as much as poss . Then I would come down with something and it would hit hard and had bouts of ME symptoms which is complex . 

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