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Could it be Polymyalgia?

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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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  • victoria99210
    victoria99210 Lesley998

    Posted

    Go see a specialist asap! He has to do a special test for this.

    I have dry eye and dry mouth syndrome which is called Sjogren's syndrome. Read up on this..very serious condition for women. I have to watch what I eat so I do not upset the inside of my mouth. I go to a dentist 3 times a year..and watch out what I eat. I hope this helps you! 

  • roxanne26976
    roxanne26976 Lesley998

    Posted

    Hi Lesey.  I just read your what you had written a year ago and was wondering if you are still o.k.  As I read your symptoms and how it happened it is exactly what I am going through right now.  I had pain in my left shoulder, fatigue, dry eyes and one morning 4am I woke up with this excruciating pain in my right shoulder and arm.  I have done pysio and massages but am still in pain everyday.  It has been over a month.  I thank you for having posted that and I hope I can get answers like you did.  Rox

     

    • EileenH
      EileenH roxanne26976

      Posted

      I don't think Lesley ever came back to tell us how she got on.

      However - if you have similar symptoms you should go back to your GP and ask for blood tests: ESR and CRP. If they are raised it will confirm this is some form of inflammation, although some patients never develop this response. If you are over 50 he should consider PMR and maybe try prednisolone at 15mg for a week or two - if that achieves a 70% improvement in your symptoms within a few days you are likely to have pred-responsive polymyalgia rheumatica. 

      But even if this doesn't work, in fact IF this doesn't work or he is unhappy about doing it or you are well under 50, insist on being referred to a rheumatologist. The symptoms you describe are typical of an autoimmune disorder and it needs expert diagnosis.

      Good luck

  • debnz
    debnz Lesley998

    Posted

    Hi there smile I came across this forum and felt like I wasnt alone.  I too have being having problems getting answers.  For the past 3 months I have been in pain with no real diagnosis.  It started in my lower back and right groin, a few days after the pain started I woke up and could not move.  Went to the hospital and they gave me an anti flam injection. For 24 hours I felt good...then the pain started in the left side of my groin as well...over the next 2 weeks I started getting pain in both shoulders as well.  I have really severe morning stiffness that can last for 2 hours.  Moving and walking around elivates some pain but if I sit down too long  the stiffness returns.  I can no longer get my arms behind my back or past shoulder height without severe pain.  At the start of all this my CRP and ESR were high...they are now within normal range yet I still have the pain.  My pain specialist thought before the new blood tests it could have been PMR (even though he considers me a bit young...43) now he says no because my inflammation markers are normal. Just feeling really lost, frustrated and down because of this pain. It is making it so hard to function normally and has affected my job.  Thanks for listening smile
    • EileenH
      EileenH debnz

      Posted

      One in six patients with PMR has normal blood values, especially in younger patients - and they can rise early in the illness but fall later. The underlying autoimmune disorder also increases and falls away and if there isn't active inflammation then the ESR may not be affected. I'm not sure a pain specialist is the person to work with unless he is willing to try something and you would be quite atypical for PMR as you are young. so should be referred to a rheumatologist.

      However - take the paper listed at the end of this link

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      to your pain specialist and ask if he would be prepared to try the diagnostic test used by thiis group. They give vit C for a week, 15mg/day pred for a week and then a week of vit C again. If it is pred-responsive PMR then the pain and stiffness will improve within a few days of starting pred and return in a similar time frame when you stop taking it. If there isn't a dramatic response then some other cause of the polymyalgia should be looked for as there are several reasons for such symptoms, including cancer - uncommon but must be excluded.

    • debnz
      debnz EileenH

      Posted

      Sorry for such a late reply.  Thank you so much Eileen you have helped me to keep pushing forward with my GP.  My symptoms have gotten worse over the last few weeks and so have being on my GP to investigate further.  I have been referred to a rheumatologist, however thtere is probably a 3 month wait.  In the mean time my GP has decided to try me on a short course of 10 mg/day of prednisone.  This is day 3 (2 nights) and what a difference !!!, not totally pain free but the stiffness and pain in my hips has subsided considerably.  I didnt have to roll out of bed and on to my knees this morning just to try and get up...utter joy. The effect on my shoulders has not been as considerable, but definitely some improvement...certainly has made things much more bearable.  I had tried ibrufen and then diclofenac with no results.  I will go back to the GP next week and let her know how I got on.  Thank you once again for sharing your knowledge and helping me to get somewhere with my pain smile
    • EileenH
      EileenH debnz

      Posted

      Did you show her the paper? That sounds fairly promising - and you may even have got away with a much lower starting dose which is great. If you start on a lower dose some bits take longer to improve a lot - even at 15mg it took a few weeks for my shoulders to become decent. Yes - I remember the performance it was to get out of bed!

      Make sure you see her before you finish the pred - because you will go back to square one if you stop the pred and have to start again and often that makes getting it all under control again harder.

    • debnz
      debnz EileenH

      Posted

      No I havent shown her the paper yet, however I will print if off and take it to my next appointment...nearing the end of day three of prednisone and I cannot believe the improvement I feel smile  Any improvement is a blessing compared to pain I was experiencing. Will keep you posted about her thoughts.  Once again thank you so much for your help...without this forum I think the Dr's would have kept fobbing me off. You have a wonderful weekend smile
  • lizzie2602
    lizzie2602 Lesley998

    Posted

    Hi, this is so interesting....I thought it might be just me! I have suffered for around 8 years with recurring tendonitis (elbows, feet) and the last 3 years with worsening joit paint. It started with my upper arms, some mornings feeling like I had a fracture it was so painful.Then my elbows, hips, ankles and more recently my finger joints. My "old self" was full of energy and always on the go but I am no constantly befuddled and fatigued. I was convinced the pain would be arthritis but GP has said no.

    I have been on a low (1mg) dose of a combned HRT (estradiol hemihydrate in combination with norethisterone acetate) since aged 44, to stop my hot flushes, as they kept me awake all night and I felt like a zombie, and I am approaching my 50th birthday.

    I read an article about yeast and gluten intolerance and I'm trying to cut out all wheat, gluten, yeast items (dried fruit, yoghut, cheese, marmite, vingar etc.) and sugar (awkward as...that's my diet!) but have to give it a go, 2 weeks so far...will keep you posted. I'm wondering ow if a higher HRT dose would be the better option.

     

    • EileenH
      EileenH lizzie2602

      Posted

      As I posted a bit further up, Lesley was on this discussion over a year ago and I don't think came back to add any more.

      This is what I wrote then:

      "However - if you have similar symptoms you should go back to your GP and ask for blood tests: ESR and CRP. If they are raised it will confirm this is some form of inflammation, although some patients never develop this response. If you are over 50 he should consider PMR and maybe try prednisolone at 15mg for a week or two - if that achieves a 70% improvement in your symptoms within a few days you are likely to have pred-responsive polymyalgia rheumatica. 

      But even if this doesn't work, in fact IF this doesn't work or he is unhappy about doing it or you are well under 50, insist on being referred to a rheumatologist. The symptoms you describe are typical of an autoimmune disorder and it needs expert diagnosis."

      i will also add that I had similar symptoms to what you describe from the age of 30 and my then gynaecologist in Germany treated me as if I was peri-menopausal, giving me HRT. It relieved many of the symptoms although some returned a bit later. I stopped taking HRT after one of the scares about longterm HRT (now known to have been just that, a scare). My symptoms like you now describe started some time later - I'd not thought about it being linked at the time but the GP insisted he could find nothing wrong, it must just be my age.  I managed for 5 years with no medication - painkillers did nothing. Aquaaerobics in a warm pool helped as did Pilates and Iyenghar yoga (both adapted to accommodate the problems).

      Anyway, after 5 years it hit like a ton of bricks and I could barely move. After a lot of research online I asked "could it be PMR?". The rheumy I saw wanted it to be anything but, but he did give me 6 weeks of pred as I was going to the States and he hoped it would help. Six hours after taking the first dose I could move! The symptoms all came back 24 hours after taking the last tablet. The rheumy didn't want to know about this typical PMR response to pred and wanted to give me other medication - one where you can't be in the sun. I was about to move to Italy! A different GP in the practice agreed it sounded very PMR-ish and continued the pred and I never saw the rheumy again.

      For most of us the diet approach hasn't helped - I was eating gluten-free at the time as I am allergic to something in the wheat grain but gluten-free is the only way to avoid wheat in the UK. I haven't tried excluding as much as you have though I eat no added sugar and no commercial products of any sort so the only sugar is what is in veggies and the occasional apple or grapes but it is occasional - a couple of times a month really - and the occsional piece very dark chocolate. And wine. The trouble with a very extreme diet is it is very difficult to stick to.

      If I were you I would ask to try a slightly higher HRT dose and if that works all well and good. If not - ask your GP to consider PMR. I was 51 when mine started properly and 50 is now the lower age where it should be considered with appropriate symptoms.

  • jon02168
    jon02168 Lesley998

    Posted

    Good Morning,

    I just happened upon this site this morning as I was looking at the symptoms of PMR.

    I realize that this is an old thread but I hope some are still reading it. I am a white male, 60+, in the US. My diagnosis began after many different DR appointments with every type specialist imaginable. I have a sleep disorder, constant pain, back problems, elevated liver enzymes. Each DR I went to focuses on their area of 'expertise' but none put it all together. I finally went to a Rheumy as a last report and he immediately diagnosed 'frozen shoulder'. The 'cure was multiple injections of cortisone over the course of a year. This treatment did little to nothing and I just allowed it to run its course.

    My GP was finally frustrated I'm sure and he sent me to another Rheumy. After blood tests and a hands on physical he agreed that I had had frozen shoulder and now PMR. A course of Prednisone turned my world around in just a matter of days. But...I have had several relapses as the DR tries to wean me from the medication. I go up and down trying to get some relief and I am now at the point where it is the worse it has been. The DR is going to try metho next I believe.

    The post of this post though is that I am a male (which puts me in the minority for this ailment) and that all of my labs (other than the liver panel) have been normal. The DR explained that a very, very small sample of the population do not test positive for PMR. Don't let a DR tell you that males do not get this ailment and do not let them tell you that you test 'normal' and therefore could not possibly have PMR. I ran into this problem with an Endo who was testing me for Addison's Disease and told me there was no way I had AD because the laabs said so...and she was wrong.

    Just wanted to add my two cents. Thanks.

    • EileenH
      EileenH jon02168

      Posted

      Good to hear your 2 cents worth Jon - absolutely right!

      First of all - you will need pred for probably a couple of years at least and if the doctors are trying to wean you off pred faster there is no wonder you have relapses. We believe very strongly that before methotrexate is introduced trying a very slow reduction makes sense. If you follow this link:

      https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

      you will find a selection of other links that will provide you with a lot of info. 

      The second to last link in the first post is to a paper by top experts in PMR in the UK and they give a reduction scheme which runs over 2 years and results in flares/relapses in only 1 in 5 instead of the more common 3 in 5 with other schemes.

      Further down the thread you will find a couple of posts called "Dead slow and nearly stop" with the reduction scheme I used and a justification for it. I never got below 9mg before but after a major flare 3 years ago I have used this approach since and am at 4mg for the first time since being on pred. A similar plan is being used successfully by a consultant rheumy in the north of England and this one is about to be used to see if it works under controlled conditions.

      I wouldn't say that 20% is a "very very small sample of the population" - and that is the figure for people with normal labs! Mine have never been even close to double figures for the ESR, even when I couldn't move.

      Do I gather that you also have Addison's disease Jon? If so, it is likely you will have trouble reducing the pred dose anyway. There are some patients who require a very low dose of pred for life and it is thought they may have adrenal dysfunction issues without it being obvious from blood tests. When reducing the pred, whether male or female, you are not heading relentlessly for zero - you are seeking the lowest dose of pred that manages the pain and stiffness. Any doctor who tries to tell you anything otherwise doesn't know his onions when it comes to PMR.

      I hope you enjoy your bedtime reading and that it helps you manage your pain relief more successfully. And I look forward to hearing of your progress - or any other comments or questions you have!

    • CeeJay30
      CeeJay30 jon02168

      Posted

      Thank for sharing your situation.   I, too, am in the US. Female, 60+.   Although I understand that there are more females with PMR than males, I have certainly seen many posts on this forum that are from men.   Regardless, the information and comments are most helpful.  EileenH has been extra, extra helpful in leading me to other information. As have several others.      My US Rheumy diagnosed me very quickly.   But, only after my GP didn't have a clue.   Although I had reduced to 7 mg (after 18 months - which many have said might be too quick), my rheumy wanted to continue with other medications to help reduce Predisone.   One of those was methotrexate.    I had a terrible reaction (heart palpitation, severe headache).   He took me off immediately.    He tried me recently on another medication and I had other severe reactions.  So, I've stopped.   However, I think this fussing with other "drugs" caused me stress and a disproportionate reaction. I'm now determined to just stay on Predisone.    I've had to go up to 9 mg to get rid of pain.   From my review of many posts and  knowing I was super comfortable at 7 before, I am  most ready to start a very, very slow reduction plan after staying at 9 for awhile.     The reason for this post is to suggest that you review methotrexate carefully.    There are not too many good comments about its helpfulness.   Maybe others will chime in here.
    • jon02168
      jon02168 CeeJay30

      Posted

      Thanks for your comments and sharing your experiences. I have an appt with the Rheumy next month and as much as I hate to do it will probably have to increase my dose of Pred. I started at 15 mg about 15 months ago and have had to increase twice already. I do think the Rheumy may think metho might be be the last resport and he is not pushing me to make any decisions regarding it at this time. I have been treated for many ailments (which I now doubt I even had) before this Rheumy diagnosed me with PMR. At first I thought he was a quack and did not believe that a few days on Pred could make me feel better..but on the second day I felt better than I ever had.
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