Had my first rheumatologist appointment on Thursday, he too, like my two GPs are convinced it’s not Polymyalgia. He’s suggesting bursitis, or tendonitis. I had five X-ray, blood’s taken, and a thorough examination of my joints, which he says are all good. I’ve to reduce my steroids, currently on 10, and see him in four months.
The reason for their change of diagnosis is, my markers are normal, and pains in legs and feet, they say is not conducive to Polymyalgia
I have taken every painkiller imaginable, used gel, ice packs, but am still in a lot of pain daily. This is mainly, lower back, buttocks, hips, legs, sometimes feet. I’m also exhausted, sleeping for a couple of hours a day.
When I woke up this morning, I felt so low, I almost took 15 mgs of steroids, to see if it made any difference.
I’d welcome any advice
Thanks
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Carathedog
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I can't obviously advise you on your diagnosis but what I can say, is that I definitely have PMR and have had it for 3yrs. All my blood tests have shown normal inflammatory markers every time they've been done, and before diagnosis I most certainly had aches and pains in my legs as well as the other associated locations.
Only your medical team can determine that but I definitely think your symptoms may warrant further exploration before any firm diagnosis is agreed upon. Good luck and hope you find a satisfactory resolution.
Like Kendrew I have normal range blood markers, I had awful hand and foot pain and one knee hurt too. But there are no "joint" problems per se - there wouldn't be, PMR doesn't affect joints, the problem is in the surrounding structures, I had the same nonsense about those signs and symptoms until I took 15mg pred and 6 hours later could move near enough normally. My world name in the field rheumy is confident enough this is PMR. They tried to tell me I had OA causing some of the pain - just by feeling - but 13 years later there was no sign of OA in the knee in question.
What we need above all is a biomarker for PMR/GCA for diagnosis and not having to rely on the luck of the draw for a doctor who isn't so blinkered.
However - you ARE dispaying the cardinal signs of piriformis syndrome (which can be part of PMR as myofascial pain syndrome) so maybe physiotherapy aimed at that might help. You can also find exercises for piriformis syndrome online and under the circumstances - if your GP won't facilitiate a physio referral I'd try these:
As the others say your blood markers do not necessarily show PMR and if you are taking steroids the inflammation should be reduced anyway. The fact other pain killers are not working could point to PMR. When you started the steroids did you have a magic moment when the pain was much reduced? Were you OK at a higher level of steroids?
I was in excruciating pain before being diagnosed and I could hardly move. So the steroids gave me back movement and I felt I was back in the land of the living. I had the fatigue etc but I was pretty pain free.
Hi Carathedog, I have a solid PMR diagnosis after a PET CT scan, which showed classic areas in my body of PMR related inflammation (I’ve had many other scans, examinations and blood tests too) in November 2021. Like you, my CRP (my diagnosis is also based on this and is monitored using this) blood marker has always being low. Just before diagnosis last year, when I could hardly move, was in immense pain and had no muscle strength, my crp level was 8.2! That’s only 3.2 above what’s considered the threshold for normal. When my PMR symptoms drop to their lowest, my levels come in at around 1. If I have a flare (I travelled long haul to Australia in March to look after my elderly sick father), I had a flare. A blood test revealed my crp were 4. For some people that’s v low and some drs say “normal”. I spoke to my rheumatologist (I’m London based) about this. He said that PMR presents itself in different ways in people (from symptoms to markers) - indeed he said that there are likely different types of PMR (a bit like diabetes types). He said the PMR I have is independent of crp markers. Meaning, crp blood work is not a valid indication of the veracity of inflammation in my body, and that my crp threshold is v different from the average PMR diagnosis. I hope that helps.
Actually depending on what study you look at the number of patients like you with unraised inflammation markers vary between 7-20%. Unfortunately because raised markers are listed as a common symptom, many doctors are side tracked by the readings and some patients struggle to get diagnosed initially, and also treated for flares along the way.
Which is why we always say-symptoms, symptoms, symptoms.
Who is it? I and a couple of other rheumies further north have been saying for some years there are different versions of PMR - the numbers seem to be increasing.
I had exactly the same response when I saw my rheumatologist for the first time. I wasn’t sure about coming off steroids but started to taper by 0.5 from 10 every week. I was pleasantly surprised not to have any awful side effects although I was still in pain. I actually started to feel like my normal self again, the bruises disappeared as did the cement leg feeling and I had more energy. Eventually I paid to have an MRI scan and it was bursitis. A steroid injection later and I feel as good as I did a year ago. Saw the rheumatologist again this week and have been discharged, I hope you have the same happy result.
Exactly what mine said, I asked if it could have been polymyalgia and he said he didn’t think so but that the steroids mask lots of things. Took my last 1 mg tablet on Monday and saw him Friday. Happy days, good luck.
Sounds like PMR to me, even though the docs try to convince us of everything else. Was so excited to have my first Rheumie appointment 2 weeks ago. She sent me for bloods which I had yesterday. Worst part is, most of the tests are for RA. Was diagnosed with PMR last January. Started on 20 mg. Prednisone. That was my miracle. I was down to 13.75mg and had to up it to 15 mg. because of intense jaw pain (which was not GCA). She immediately dropped me to 12.5 mg and now I'm in a flare. I increased my dose up to 13 mg. and it seems to be helping. Your body will let you know. Because of the close proximity to my Covid vax's, like within days, it was thought the PMR was vaccine induced. She said to me, "maybe you were just meant to get PMR". Shopping for a new Rheumie after 5 months of waiting for this one. Cheers to you.
To be fair - the vaccine was probably the final straw for your immune system. If you hadn't had the Covid vaccine, it would have been the next insult to the immune system - Covid, another illness, severe stress of some sort, another vaccine. If you see what I'm getting at ...
I do get you, however, there was nothing pre-vax; no severe stress; no other vaccines. Not sick. The only vaccines I had were the Covid-19. Never had a flu shot in my life. May 4th, then the neck and shoulder pain started, all summer. Went through X number of pillows thinking it was that. One cost me $139.00 and no change. Aug. 4th, 10 days later I woke up and could not move, progressively until Jan. 5/22. Then diagnosed with PMR and went on to Prednisone 20 mg. Not hereditary. I'm just grateful that I have this group to say "hey, let your body do the talking". Do I feel "I was meant get PMR" no. It could have been so much worse with what runs in my family i.e. various cancers, dementia and Alzheimer's. If this is the "luck of the draw", so be it. BTW, I so appreciate all of your knowledge, input and assistance. Thank you.😘
Two years ago I had pain in the upper legs, neck, shoulders and arms, doctor suggested it could be PMR , sent me for blood tests which were normal and said it couldn't be PMR. Appointment with rheumatologist at local hospital, Northwick Park. Rheumatologist said can't be PMR as blood tests showed normal inflammatory markers. She diagnosed tendonitis, I disagreed and she wasn't happy. I was convinced it was PMR, thanks to information I found on this site. It got to a point where the pain made it difficult to sleep or walk. I found a local recommended rheumatologist on this site, Dr Rod Hughes. He immediately diagnosed PMR and put me on 15mg prednisolone. Within 2/3 days 90% of the pain had disappeared. I managed to get down to 0 mg prednisolone but had a flare following a bout of flu and am working down from 15 mg again but am 95% pain free. If you live in the south I would definitely recommend Dr Hughes. topdoctors.co.uk/doctor/rod.... I had an appointment with my rheumatologist a month ago and she had changed her mind and acknowledged that PMR is possible when blood tests have shown normal inflammatory markers and that she shouldn't believe everything she was taught at medical school. Good on her for admitting it.
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Must be a good lad - went to Newcastle uni!!
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