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Could it be Polymyalgia?

Posted , 57 users are following.

Lesley998
Lesley998

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.

4 likes, 147 replies

147 Replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hi Lesley

    I'm late joining in this thread but having read your original post, I believe your symptoms strongly suggest Sjogren's Syndrome. You need certain blood tests (ANA?) to either confirm or rule this out.

    I suffer from PMR and GCA but was diagnosed with Sjogren's about 18 months ago following a severe throat infection that left me with long term swollen neck/salivary glands and all the symptoms that you describe including dry mouth, with my tongue sticking to the roof of my mouth during the night. As the blood test results came back negative, the diagnosis was later changed to Mickulitz's Syndrome (a very close relative of Sjogren's) although I have since discovered that the tests are not foolproof. However, unlike Sjogren's, Mickulitz's Syndrome can eventually resolve itself, and happily for me all the dryness did resolve within about 6 months but the glands do still swell on and off. Apparently when you suffer from one auto immune disease it can be easy to succumb to another.

    Do hope this helps and you get a definitive diagnosis and the relevant treatment soon.

  • thorny
    thorny

    Posted

    Hello Lesley, My name is Brian, the symptons you are having indicate P.M.R. I started with pains in my lower back and back thighs. I went to the Docs who suggested it was the seats in my Fiat car probably causing these pains. He gave me paracetamol to see how I went on. This was in August 1997. About a month later, a Sunday afternoon, I cam down from bed at 2pm, I was due to visit my father. Truing to get my shoes on left me frozen unable to move, so much so the emergency Doc was called for. He could not diagnose the problem and .I was in hospital by about 4.30pm ii took 3 weeks to diagnose what I had, and immediately I was given 44MG of steriods. Within an hour it was as though I had never had the pain. Since that time I have had heart bypass, two new knee replacements, bone density problems Osteoarthritis, Osteoporosis. and Type 2 Diabetes. All because of P.M.R. I now take 5mg a day, just upted from 4mg because my PMR is acting up again. I have asked my GP and Hospital staff to what readings of the E.S.R. is relevant to the test with no satisfactory answer. I am told that normally anyone picking up P.M.R can usually be reliefed of it within 2-5years, sadly I am one to whom it will be with me until death. Please feel free to ask me any questions
  • Lesley998
    Lesley998

    Posted

    Thanks you MrsO and Brian for your replies. I am absolutely gutted today as I phoned the surgery this morning and my blood results are completely 'normal' according to the receptionist. I asked to speak to the doctor, and he phoned me back half an hour ago, and simply told me again that all of my blood tests had come back within normal range. I explained that I was still in constant pain and he advised me to make another appointment to see how things were in a week - meantime he has prescribed amytriptilene for what he now thinks is 'nerve pain'. (I can understand how you might get one trapped nerve...but in both your shoulders, and elbows at the same time??)

    I just don't know what to do or say to them next. How do I make them understand how painful this is and how worried I am..? Pain like this is just not normal, and I don't know how long I can try to carry on as usual - even making the beds today had me almost weeping.I just feel so frustrated and upset.

    Can I make a private appointment with a rheumatologist to discuss my worries about auto immune? Is there any point if my bloods don't show inflammation?

    Thanks for listening.

    Lesley

  • carolk
    carolk

    Posted

    it is possible to have pmr with bloods in the normal range, the diagnosis of pmr is not dependant on blood results alone but your rapid improvement on taking steroids carolk
    • shirleyann43258
      shirleyann43258 carolk

      Posted

      Hello I am new to group., this my first try at post.. hi Carol and all.So , How do you get Dr's to hear that, although helpful labs aren't always a 100 %. proof in these types illnesses. I. have been struggling horribly, far to long. I to have been given Floroquinalin antibiotics, with high dose prednisone plus gadolinium for MRIs plus others dye. ect.. all the adverse effects I've gotten.. are still raging in me. However, I have returned to Mich. from FL.after several years.So am starting over again with Drs ,so it's difficult to say the least.....for any of these Dr's to listen to me!? much to my frustration they barely look at any records I brought up with me. Went once again to Ruematologist yesterday, he says I just have to keep taking high powered....pain tablet that gives me really bad effects...but little if any help with pain.and more importantly SYMTOMS....GRRR. am at odds as what to do...pain so bad I usually can't bear to drive nor can I see well enough...It's been nearly 3 years now since all began. Am having horrific stabbing pain in head left side,neck shoulders painful bad...low back, groin ....my hands so bad can't do anything in am for most day , all these are always same...no real variation in how..the pain and limitations to FUNCTION. near normal.. effect me .Oh also extreme hypertension of which I have struggled with since about 19 yrs old...I am now 66 ...the nephrologist/ hypertension Dr. I see here just added another B/P pill but.....told me by letter to stop taking my thyroid tabs....? I've been on thyroid meds since I was pre-teen., and this Dr. I've gone to since my forties..he was one who hadn't retired, while I was in FL.... Sorry this is long and confusing,I am soo exhausted from all this.I live alone have small 6# Dog. It is impossible for me to take care of him most days I simply don't know where to turn next...I have had autoimmune diseases since childhood so these ofcourse have become very active with all this going on in my body. Thank you in advance for any suggestions as to what I should try now? So tired I can't believe I can sort of stand up. Pain brings me to tears far to often. Maybe I could somehow have private message with one or more of the experienced members, I realize none of us are trying to treat symtoms ect. It is helpful input, advice.Thanks again.
    • EileenH
      EileenH shirleyann43258

      Posted

      This is a very old thread - I suggest you post this as a new thread and then you are likely to get more advice/suggestions from others. I'm on holiday at present and don't have a lot of time to reply. But I would suggest you need a new rheumatologist - because whatever it is you have needs investigating properly.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Lesley - as Carol has said, some people do have normal blood markers in spite of eventually being diagnosed with PMR. Likewise, with Sjogren's but the blood tests are different - they are called anti-Ro and anti-La. Do you still have the very dry mouth and dry eye symptoms - if so, then this does point more to a diagnosis of Sjogren's which can also cause arthritic-type pain in the body. I am horrified when GPs prescribe medications for what they just "think" might be a certain condition. Perhaps there is another GP in the practice who is a better listener! I have come across a few people who in your position sought the advice of a rheumatologist privately with great success. We shouldn't have to but it's worth it for peace of mind. Good luck.
  • EileenH
    EileenH

    Posted

    Lesley: Ah well - what is normal? According to the books the "normal" range for ESR found in the general population is up to about 40, but all that means is that people can have any reading between 1 and 40 without necessarily being ill. I have a reading that is consistently below 10, usually between 4 and 7 - even when I can't move because of the PMR pain. About 1 in 6 of patients have a perfectly normal set of blood readings and this is more common in younger patients - which you are. The response to a dose of about 15 to 20mg of pred is often taken as confirming PMR if you get a very rapid response, it isn't 100% certain but very suggestive. For other things you tend to need a higher dose and the response is slower.

    You doctor hasn't said it but he probably is classifying you with the people who have fibromyalgia which often responds to amitryptiline - but there are actually also criteria for that diagnosis too. He is wrong about joint pain - bursitis and tendonitis/synovitis are also common in PMR and I had horrid pain in finger joints and elbows, both consistent, ongoing pain and sharp stabbing pains associated with certain movements. His "nerve pain" isn't in the sense of trapped nerves. What he is very wrong in doing is dismissing you as "hysterical" or "psychosomatic" and I'm using that in the proper medical sense.

    You have a right to see any doctor in your practice - maybe another might take the time to listen. You can go privately to a rheumatologist but even then you usually need a letter of referral from your GP, it depends. However, it is your right to be referred to someone and in this case a rheumatologist is the right direction - but on the NHS it could take up to 3 or 4 months (or more since the current gubmint removed the targets).

    And whilst it pains me to say this - are you in a relationship? Take your other half with you. It is amazing what the presence of a man does to the hearing of some doctors when faced with a "menopausal woman". I was told that for 5 years too as my symptoms started when I was in my early 50s and I can really empathise with the feeling of being close to tears when faced with a task that suddenly is beyond you, especially bed making. And frankly - if he's classifying you with what he sees as middle-aged women with problems, take advantage of it. Take the OH and don't even try to hold back the tears. Write down the course of what has happened, take it with you and stick to your guns. MrsO who has replied suggesting it could be Sjogrens ended up in a wheelchair being taken to hospital by ambulance for appointments because she wasn't listened to before finally being diagnosed. You are not on your own in feeling ignored, many of us have been there.

    Where do you live? If you go over to the other forum, the northeast PMR and GCA support group one with a link at the top of this discussion, there are contacts for support groups in various areas and people mention particularly good or bad rheumy departments. We are not allowed to recommend specific consultants but people will send a private message suggestion of somewhere/one worth trying.

    Eileen

  • Lesley998
    Lesley998

    Posted

    Your post above made me well up a little - at least someone understands my position! I wish doctors would come on here and read some of these posts. I honestly came away from my GP the other day - in considerable pain - but feeling like an over anxious malingerer. Its a panicky sort of feeling too - I mean, if my own GP (who is supposed to help and support) either doesn't believe me, or simply doesn't know what is going on with me - where the hell do I go next with this. I can't live with this pain for the rest of my life. Every morning I wake up and it is a little worse, and I can't get rid of that feeling of dread when it dawns on me that it hasn't just 'gone' over night as quickly as it came like I hoped, and it probably wont.

    I know my GP has me down as the hormonal, anxious sort. He is always a bit patronising and has asked more than once if I have been 'googling' my symptoms because I seem to know too much!! I get the feeling that if I ask for steroids (ie diagnosing myself with PMR) just to see if there is any improvement like you say - he will say no. I brought up the subject of PMR and Sjogrens at my at the previous appointment and he dismissed the idea then - and my range of motion in the surgery and the latest bloods results won't have changed his mind - he was quite definite on the phone that he thinks it is nerve pain.

    Will take your advice on taking the OH (although I wish I could take someone from the forum! and will look at the links for a rheumy as I think that it what it is going to take.

    Feels like I am in it for the long haul. sad

    Thanks again

    Lesley

  • Lesley998
    Lesley998

    Posted

    ....meant to add Eileen, I can't thank you and the other people on this forum enough for your help and advice.

    Thank you.

  • Mugwump
    Mugwump

    Posted

    Hello Lesley. I am into my fourth year with PMR and it's a beast to diagnose and treat. It is a disease where all others have to be discounted, rather than one positive result giving a definite answer. The first rheumatologist I saw declared I was too young at 53+ to have PMR as it could only start at 55! To that point my GP had put me on 40mg prednisilone, but the rheumatologist changed my presrciption to amitryptilline and ibuprofen. After three weeks of struggling I had to admit defeat and pleaded to be allowed to take predisilone again. The relief was tremendous - within hours. This has happened on another occasion too, and also when I took echinacea (a herb to improve immunity - it blocks the action of steroids).

    Yes, the side effects of steroids are awful, but they keep the symptoms at bay and may allow you to function normally again. The side effects of naproxyn are also nasty - I also struggle with psoriasis and the itching on my feet at night nearly has me crying - but it could be due to naproxyn.

    I also advise contacting PMRGCAuk - lovely Jean supplies a wonderful information pack for a small fee.

    Best of luck and don't give up!

  • carolk
    carolk

    Posted

    welcome i know you dont want to be here but it sounds as if you may have found yourself at the right place ,first and foremost read up about gca and pmr on the other website knowledge is power ,secondly go back to your gp you need blood tests done esr or crp to establish inflammartory markers are raised but if not raised it does not mean you have gca or pmr .this is established by a very positive result to taking high doses of

    steroids .also he needs to eliminate other conditions which can be done by blood tests dont be fobbed off with the old 50 chestnut you need action now .come back to us with your questions and we will answer them dont give up gps often misdiagnose pmr and gca at first just keep going carolk

  • EileenH
    EileenH

    Posted

    Mugwump - I'm surprised you haven't been considered as a case of psoriatric arthritis. Very similar to PMR and although I'd NEVER had any sign of psoriasis the rheumy I saw was adamant it wasn't PMR despite being pretty textbook symptoms (plus some GCA ones that have been ignored) and I responded to 15mg pred withing 6 hours! I was also "too young" and have no abnormal blood results except a liver marker which triggered a "drinker" panic on the part of a middle-eastern consultant until I had a ultrasound scan. (He also thought I'd had a TIA despite having NO indicators at all except high blood pressure and that was ignored and never investigated. I now have atrial fibrillation and it is obvious from the tests done here in Italy that I have had HBP for some time since there is some thickening of the walls of the heart.

    But you are so right - PMR is a diagnosis of exclusion and neither GPs nor rheumys seem to be aware of that!

  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Mugwump

    Like Eileen, I'm surprised psoriatic arthritis hasn't been considered as a possible diagnosis. A colleague of my husband's recently became quite ill with similar sounding pain to that of PMR but when my hubby mentioned she had a nasty itchy rash on her head as well, I immediately thought of psoriatic arthritis, simply because one of the questions a rheumy put to me when I first became ill was whether I'd ever had psoriasis. She was eventually diagnosed with psoriatic arthritis and put on low dose steroids among other things. She's had a tough time after being hospitalised but is also in a full time teaching job so has a fair amount of stress to cope with. Happily being in the middle of the school holidays at present she is suddenly feeling much better. Food for thought for you perhaps?

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