Hi, I woke up one morning a couple of months ago feeling like I had run a marathon. I expected the pain in my arms and thighs to clear in a few days thinking that I must have overdone something but instead things got progressively worse to the point where 3 weeks ago I saw my GP. She mentioned Polymyalgia and ordered blood tests which included CRP but not ESR. All bloods including liver and kidney function have come back ok except for Plasma Viscocity which was borderline so has to be repeated in a couple of weeks time. Should ESR have been ordered or is the fact that CRP is normal an indicator that this is not Polymyalgia??? I am due to see my GP again after the next blood tests have been done.
Meantime my life is fast becoming a nightmare. A normally very active 74 year old I am now crippled with pain and stiffness especially during the night and first thing in the morning. The stiffness eases somewhat as I get up and about but the pain remains constant. I cannot raise my arms above my head withour great difficulty and the pain in my right thigh is horrendous neccessitating me to lift my own leg into the car or onto the bed. Aside from pain in my shoulders and hips/thighs I have pain in my neck, lower arms and hands.
I am not sure what to make of all this especially as my CRP seems to be nomal. What can be happening to my poor body? This is very difficult to live with.
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jaycee444
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I think it is about 20% of sufferers do not have inflammatory markers in their blood. So you would not be the only one! Other than that your symptoms sound typical for PMR. The best test we have is to try steroids/Prednisolone and see if it works.After quite a few years with pretty "atypical"PMR, my doctors very rarely test ESR/CRP as they prefer to go on symptoms and the markers do not mean much on their own.
Thanks for your prompt reply. Yes after all I have been reading I am pretty sure that this is the problem. My normal life has come to an abrupt end so I am very anxious to get some help sorted
Good Morning jaycee
Now that all sounds so very familiar to me l’m afraid!
Did your GP tell you what your CRP actually was? As sometimes their idea of Normal does not relate to Normal for PMR
I never had my ESR tested as it wasn’t one of the blood tests done by the GP Surgeries in Wales.
Up to 20% of sufferers have ‘normal’ blood values so it’s not an exact science.
The usual proof is a trial dose of Prednisolone which l had for two weeks & the difference was like magic, my CRP wasn’t hugely high but enough!
When are you having your Bloods repeated? As l think you could do with seeing GP sooner really. GO’s are often reluctant to diagnose PMR unfortunately.
Hello MrsNails. My next bloods are due at the end of this month but I think that it will only be the 'borderline Plasma Viscocity' as all else was reported as 'normal'. I see my GP a few days after that. She is on holiday at the moment otherwise I would have gone in earlier but I may have to plump for seeing someone else in the meantime as I am in so much trouble. My GP did mention that if it was Polymyalgia steroids would be the route to go but at the time I expressed real dismay at the possibility that I would be precribed steroids especially with all the negative side effects that are reported. Three weeks on and I am at the point of being willing to accept anything that will help me.
I think you should ring for a soon as possible appointment, you cannot continue like this & a two week trial of Prednisolone will prove it one way or another. If you improve within two/three days or sometimes sooner, you’ll know for sure.
Take MrsNails advice and go and sit in the surgery if necessary till you get to see your GP. The end of the month is just not good enough and a blood test can be expedited, mine was done in one day...................anyway 15 - 20 mg of pred will sharp tell if you have PMR, which I really think you have.
I know people talk about side effects but everyone is different. I was just like you, now two years down the line (now 72). Pred gave me back my life. I haven’t gained loads of weight, my hair is a bit curlier, I bruise easily, I take care of my eyes and I rest more. But I can get in and out of the car and get out of the bath! I play with my grandson and walk. Try the Pred - it’s not a demon - and get back your independence 👍🏻😄😘
What you describe sounds very like my own experience when I first had PMR, except that I would add that the deathly fatigue that accompanied the pain and stiffness made things so much worse. I agree with the others, get some prednisolone and find out if it relieves the pain and stiffness in order to establish whether what you have is definitely PMR. I understand your misgivings about taking steroids. I had memories of my Uncle Frank who had steroid treatment over 40 years ago and went from being a skinny little whippet to being the Michelin man in less than a month. But honestly, for most people the difference it makes in quality of life more than makes up for the side effects. One good tip - don't be like me and give in to the rampant hunger which you're likely to experience. From the start follow a low carb diet with no sugar and minimal white carbs (white bread, pasta, rice etc plus potatoes). If you search the forum for low carb diet, you'll find plenty of good advice.
I was the same as you. The CRP was normal. But a few weeks later I got an ESR and it was 103 which is higher than the 3 it is now on pred for six months and feeling good.
I always ask for a copy of my test results which I find really useful when I look back. In fact I can now see then on-line but they do not always have so much information on them as the printout.
Someone after my own heart. Other people’s interpretations of your readings (especially if it’s a different doctor each time viewing them) don’t always correlate with your knowledge.
I asked for my results recently in the surgery, the receptionist looked at the screen and said everything looked normal! I then asked if I could have a print out and she told me “you have to write a letter” So I have done also requesting all my medical notes and all bloods too. I just wonder where she did her medical training and why she’s a receptionist.
Thank you all so much for your replies and advice. I now have an appointment for Wednesday so will hopefully get some help. Will let you know how I get on.
Approximately 1 in 5 patients with PMR/GCA have ESR and CRP levels that are "within normal range" - although that doesn't mean the level measured is normal for you. My normal ESR is in low single figures - it hovered at 16-18 during a major flare a few years ago, still "in normal range" according to the figures. What you describe is typical of PMR although there are other causes of the symptoms which need to ruled out - but it would be nice if your GP tried a week of a moderate dose of pred, maybe 15-20mg/day.
And seeing another GP may not be an entirely bad thing - sometimes they see what your usual doctor doesn't.
Sounds like PMR by description of your symptoms. A normal CRP and sedimentation rate does not rule it out; about 20% of people with PMR have normal blood results.
With regard to blood test results and doctors. One doctor, who I had seen several times complaining about "pain all over", told me everything was fine. I specifically asked about iron because I've had trouble with iron levels over the years and she said that was fine too. A few weeks later I was able to see a different doctor who, looking at the same results (plus my symptoms), was sure it was PMR, ran a bunch of other tests, including the ones already done, and put me on a week trial of pred (15 mg a day) which worked a miracle in a couple of days. She also said my ferritin was practically non-existent and told me to take iron supplements. I should add even this second doctor felt my CRP and ESR were "normal for my age", but she has always said symptoms are what we have to go by. And in fact now that I know more, I realize the levels were elevated, fairly significantly actually, especially compared with what they are now which really is "normal".
My exact symptoms( did not sleep for 3 nights because of pain in thighs) before diagnosed correctly with PMR. Three days of 40mg of prednisone gave me tremendous relief, then to 20. Now after 4 months am fortunate enough to have tapered to 3mg, so don't give up hope.
You present with exactly the same symptoms I had - overnight transition from an active “young 64” to a practically crippled octogenarian.
Fortunately, I was able to move up my “annual physical” and only had to suffer the aches and stiffness and disabilities (it was hard to dress myself, etc.) for about 3 weeks.
Though my CRP and ESR were only mildly elevated, compared to others, my GP (internal medicine specialist) put me on 15 mg prednisone (which scared the crap out of me, but what choice did I have?) and I experienced almost immediate relief, and had an uneventful fast taper to 10mg 3 weeks later, then decreasing by 1 mg a month to zero by New Years Eve.
My “remission” is uncertain, as I still have mild stiffness, and “new aches in wrists and elbows, plus tendonitis in my thighs, but as these are mostly relieved by NSAIDs, I’m hoping they aren’t the PMR rearing its ugly head.
Throughout treatment and beyond, I’ve continued my normal activities (hiking, biking and skiing) though a bit slower and easier than before. (Partly because if I fall skiing, it’s pretty hard to get back up, so I don’t fall if I can help it.)
I suppose next step is to see a rheumatologist, and get some imaging, to sort out if I have OA or carpal tunnel or what.
Prednisone masked all aches and pains, so without pred, the old injuries and new (age-related or pred-related) aches and pains return.
Update..... had emergency appointment with GP today as have had a terrible weekend. She has put me on 15mg per day Prednisolone - 3 weeks supply but if no impovement within first week then stop the tablets. If signs of improvement then continue 15 mg per day till I see her again in 3 weeks. Have my fingers crossed and will let you know how I get on. Thank you all so much - its really comforting to know there are others out there willing to give good sensible advice and if I hadnt come to this website I would probably still be struggling without knowing what to do.
Hope you have taken a dose. Bear in mind that some people need a higher dose for longer to experience really good relief so I would ask to take 2 weeks to see if it works. Someone on another thread said pain had been relieve but on day 9 stiffness still there so it happens. I worked within 24 hours in terms of freeing neck and shoulders for me. Other things then started to ease over a week or two. Hope it kicks in .....but wish you didn't feel bad and have to take it.
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