Could it be Polymyalgia?

Posted , 57 users are following.

Hello all, I am new here. I am really struggling at the moment with painful symptoms and am getting absolutely nowhere with my GP. I suspect I have some sort of inflammatory condition or disease, and wondered if perhaps someone who has PMR would read my story and tell me if they think I am on the right track.

About a month ago, completely out of the blue I woke up with incredibly painful and stiff shoulders and upper arms. (I knew it was not exercise induced lactic acid muscle pain - I know how that feels, and I had done absolutely no ecercise over the preceeding days - the pain just came out of nowhere.)I found I could hardly get out of bed, and I could not lift my left arm above my head. I felt like I had been hit by a lorry. However, by the time I was moving around the stiffness had gone within about ten minutes, and the pain had lessened but I was aware of soreness in the muscles all day when ever I moved or used my arms. I thought perhaps I was getting the flu, or had a virus, or had slept awkwardly. However, it did not go away, and I have woken with this pain every day since for a month. It seems to be getting worse, spreading into all the muscles of my upper back, shoulders and arms, but I feel it mostly in my biceps and deltoids.The other day I leaned back from the passenger seat in the car to reach something on the back seat - and the pain was enough to stop my breath for a moment - a terrible pain that shot through my upper shoulder. I feel it is the muscles and not the joints. I am taking maximum dose Paracetamol and Ibuprofen in the morning and this helps the nagging, constant pain. I am aware of extreme pain with most arm movements such as wrapping a towel round me, putting on and taking off anything with sleeves...driving (turning the wheel) carrying shoppping bags, holding the dog lead at arms length. I just cannot do the simplest things without feeling pain. Some days are more painful than others and although I am not in constant pain, I have found certain movements will cause me to experience sudden pain which is really excruciating. I have never felt pain like it before, it is unlike any strain, or exercise induced pain I have ever felt.

I went to my GP two weeks ago, who told me I am 'anxious', and that aches and pains are probably perimenopausal in origin (I am 50)he really does not seem to understand just how painful this is. I am not one to argue with the doctor (yet!) so I just took his advice about 'massage' and 'relaxation' and left. I went back yesterday to see a female doctor, and told her I was feeling much worse. She examined me thoroughly (sods law I was having a good day and my muscles although sore, were pliable enough) and gave me a prescription for Naproxyn.'Myalgia' of any sort was not mentioned. I just don't feel they are taking me seriously and I don't know what to ask them to do next

I have also been thinking back over the last year or so, and realise I have experienced a host of strange symptoms. I seem to have 'dried up'! I had painful inflamed skin on the inside of my nose for a long time - it was very irritated and dry and extremely sore - I used to rub on E5 with a cotton bud to try to get some relief. I never went to the doctor with it, as I thought it was fairly minor and was just an allergy. (This symptom has actually settled down now and I only get occasional flare ups.) However, my eyes are also very dry - especially when I open them in the morning - I get a slight ripping sensation as if the lids are stuck to my eyeball - which is probably exactly what is happening. I have been to my optician who did a little test with paper, and told me I did indeed have very dry eyes, but - because I am still producing tears - he did not refer me on to a anyone, , I was simply given Viscotears oily gel to place into the eye. Around January of this year I notoiced my mouth was also unusually dry.I find it hard to eat meals without water, and wake in the morning with my tongue stuck to the roof of my mouth. I also have a very strange 'taste' or sensation all the time. I find this very hard to describe as it is not really a 'taste'...more of a change in how my mouth feels. The inside of my lips and tongue feel irritated and almost tingly all the time. And this sounds comletely mad - but I have a genuine sensation of cool mint all the time, almost menthol, which I can feel on the surface of my eyeballs too. Almost like the sensation when you open a jar of menthol rub and breathe in the vaopur.

And lastly, I have a constant burning/tingling feeling on the skin of my face. It feels like mixture of sunburn, and that irritated nerve feeling when you are getting the flu.

I hope someone can identify with anything I have said and give me some advice. Thanks for reading.

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  • Posted

     Hi everyone.  Five years ago I believed I had PMR, and prednisone worked like magic.  My local rheumy disagreed and put me on amytryptilline and ibuprofen for psoriatic arthritis (PsA).  Couldn't stand it!  Begged my GP to go back on pred.  New rheumy agreed, after two years, that possibly it was PsA.  Now on Leflunomide, not as magic as pred, but I know after 36 hours if I haven't taken it.  Was still taking around 4mg pred, until a flare meant going back up to 20 for a week, down to 5mg over 3 weeks.  I stayed on 1mg a day - my choice.  Rheumy then decided I had fibromyalgia too - so on the amytryp again.  Agreed to drop the pred, but ever since, I've had the old aches and weaknesses.  Trying ibuprofen 400mg 2/3 time a day, and 2 paracetamol 2 times a day.  If I can have PsA + fibro, could it also be PsA + PMR?  
    • Posted

      Possibly. I had a prat of a rheumy for whom PMR wasn't complicated enough so it wasn't an acceptable diagnosis. Luckily there was a GP in the practice who believed in the response to pred enough to say "PMR". I'm bewildered why it is bad to take pred because of the side effects when it patently obviously works but it is fine to take ibuprofen that doesn't work - and put my friend in ICU with a gastric bleed after 3 doses. Nothing would induce me to take ibuprfen and paracetamol on a permanent basis.

      Where are you?

       

    • Posted

      PS His favoured diagnosis was psoriatric arthritis and wanted to use sulphasalazine. Then it became more generic . I never went back.
  • Posted

    I'm in UK.  I'm on Omeprazole to protect my gut, hopefully.  On the mo, I've got a really sore ankle, waiting for the results of Xray, and an index finger tremor (which I understand could be down to pred - Parkinson's!).

     

  • Posted

    Sorry EileenH - Cheshire.
    • Posted

      Not sure about Manchester but Leeds is ace. Worth the journey IMHO.
  • Posted

    I'm being treated by a rheumy in another NHS Trust, and there doesn't seem to be any joined up thinking!!  My current GP is well into musco-skeletal, so I'll give him a chance.  Thanks for all the comments on this site - it helps just to know I'm not alone!!
  • Posted

    Hi Lesley

    Yes you do have polymyalgia from the information you describe, i was given a blood test by my doctor, as my daughter in law who works at the hospital told me to ask for one as she knew the symtems.

    Good luck

     

    • Posted

      There is no blood test that can "confirm" PMR, just that add to the suspicions. One in 5 patients have normal blood tests - but they still have PMR. The symptoms and response to a moderate dose of pred are more important than blood tests - although other blood tests should be done to rule out other causes.
  • Posted

    thank you Lesley for correcting me, my doctor did a blood test and it did show up that i was border line.
  • Posted

    These same symptoms were experienced by me a year ago.  My MD did all kind of tests for RA etc.  All came back neg.  My sed rate was high.  My son did some research and came up with this diagnosis.  I then told my MD who sent me to a rheumatoligist who started me on Prednisone.  All symptoms went away in a matter of two days.  That was a year ago and now I have gone from 20mg prenisone to 4mg daily.   My sed rate still too high to go down more mgs of Prednisone.  He has to reduce the med. slowly so the PMR does not recur.  Every month I have to have lab work done to see if I can go down more mgs.  My advice is do not suffer longer, go see a Rheumatologist.  Let me know how you do.  Pain is not fun.  Good luck.
  • Posted

    I've just read through your postings and all the replies. I feel badly that you are finding no answers and little help from your GP.( I just joined this forum a couple of weeks ago myself ) I originally thought I had hurt my back and went to an orthopedic dr and subsequently had steroid injections in my back. Then my hips started to hurt as well. I had MRI's. X-rays multiple times. I started getting flu like symptoms at times and had some other unusual symptoms come and go. Meanwhile the pain increased. While PMR pain often starts in shoulders/arms that didn't happen to me for months. What I'm pointing out is that PMR doesn't always follow the same rules for everybody.  Your pain certainly sounds like it could be PMR but you need a Dr that is willing to help you find out and not disregard what you say. I am un the US so I don't exactly know how the health system works where you are but if you can go to an Rheumatologist without a referral from your GP I would certainly opt for that. We all know how difficult and trying the pain is day after day. 
    • Posted

      I didnt realize the post was so long ago. Sorry

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