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 did you figure out answers to what was causing your pain? My mother is going through similar pain. She was on a station for a couple of weeks then started with very severe muscle pain. She stopped the statins immediately. Was put on a one week dose of prednisone 10mg. That did not help her pain. All of her blood work came back normal. She has now had this for over a month. She hurts so bad you can't even hug her.

    • Posted

      If it is PMR (and it could be) 10mg of pred is nowhere near enough to manage the symptoms for most people. The latest guidelines say "the lowest effective dose in the range 12.5-25mg, not lower than 12.5mg or above 30mg" There will be the occasional person who finds relief at 10mg but mostly at least 15mg and often 20mg are needed at the start.

      PMR is listed as an adverse effect for at least one statin. Unfortunately, if it was just the statin it could take a few months to improve. But to see if it IS PMR - your mother needs to see another doctor who has more idea about managing PMR symptoms and will try a higher dose. 

    • Posted

      Thank you!! I will send her this information. We had no idea it could take months to recover from the statin. She sees the rheumatologist Friday for the first time. Hopefully they can give more answers. Prednisone would help if it were from the statin also wouldn't it? Do you know about how long it takes for the higher dose to start providing relief?

    • Posted

      I don't THINK pred helps with the usual statin version of PMR though it might. When I was put on a statin it was less pain than feeling like I'd been run over by a bus and then someone had their hands round my chest and was squeezing - I could barely walk 50m up a very gentle slope into the hospital. I'd only been on it a week when I stopped and it was several weeks before I felt better and more like months before I was back to pre-statin levels of "health" (all things are relative and I had been pretty ill).

      How long it takes depends on the person. I took 15mg at about 10am and about 4pm I got up from the computer, walked downstairs normally, made a cup of tea and walked back up carrying it. The day before I had stomped downstairs one step at a time and crawled back up on hands and knees, putting the cup on the top step I could reach each time! I know others where it was similar - even though we weren't 100% back to normal the difference was that dramatic. Others take a few days, yet others take a week or two.

    • Posted

      I am confused by this. It sounds like it did help you. Was your pain from the statin or pmr? She was only in the statin for at most 2 weeks.
    • Posted

      Have you heard of polymyositis? This is one of the disorders they are testing for.
    • Posted

      I had already had PMR for several years, 5 of them without treatment. By then I was on a steroid and was OK, reasonably pain-free - until I was in hospital because of severe atrial fibrillation as a drug reaction. The non-cardiologists decided my cholesterol was high (of course it was, I was on a steroid) and I must go on a statin. Within a week of just half-dose I could barely walk. What I'm saying is that for PMR I had a dramatic response, but with the statin I didn't have much pain, but I couldn't function, I was so weak.

      Polymyositis is similar to PMR in presentation but it is inflammation of the MUSCLES, PMR is probably inflammation of BLOOD VESSELS, a vasculitis. In polymyositis the muscles are damaged - and as a result the blood test CPK (creatine kinase) is raised. In that sense they are easy to distinguish. It is also treated with steroids but usually at a much higher dose.

    • Posted

      I understand now. They ran several test including one for cpk levels. Everything is coming back normal. At first I was worried about rhabdomyolisis due to the statins. But again, all tests are coming back normal.
    • Posted

      One in five patients with PMR has normal blood tests - no-one knows why but it happens. Some doctors don't agree - nothing new there then!!!

    • Posted

      Thank you! We are hoping to have as much information as possible when we go to the rheumatologist on Friday. Hoping to get answers soon as she has been in pain for too long already. As I'm sure you were!!

  • Posted

    I had a GP who recognised it but considered me too young. However, I had tingling in the face and hands, a sore in my nose and optician-confirmed dry eyes. Then came all the immobility an pain. Blood tests and a consultant confirmed it was indeed PMR. Pretty steroid resistant though and they call it atypical. But rheumy said until there is another disease encompassing all the symptoms we both have/had it is going to be PMR!!

    Don't give up and go privately for a diagnosis if needed. Good luck,

    Clare x

    • Posted

      I note that this was originally posted six years ago.  Hopefully Lesley998 is all better now!

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