With all over body pain, now over 6 months duration - but with nothing showing up across the blood tests, xrays, plus full body Nuclear bone and also PET-CT tissue scans, it looks like at the end of March when I next see my new female rheumatologist at Chelsea & Westminster Hospital I'll be presented with a diagnosis of Fibromyalgia.
When she first examined me in October she told me, "I think you were misdiagnosed, OR the PMR burnt itself out. You havembeen on too high a dose of Prednisolone for too long."
Has anyone been told this?
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Bennijax
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A small percentage of patients never show raised inflammatory markers in their blood which leads to mis-diagnoses ie false negatives. The real test is a positive response to Pred.
A way you can do a check between the two is to see if steroids work, if they do then it will not be fibromyalgia, but could be PMR. If pain killers work it will probably not be PMR, but could be fibromyalgia.
Hi, I have PMR for over a year now and for over 6 months I’ve had all over body pain, I’ve been diagnosed with fibromyalgia as well as PMR, I was only diagnosed a few weeks ago with fibromyalgia. I’m still reducing my pred down to 7.5 at the moment but trying to live with the new info, my job doesn’t help with moving about and lifting but I’ve got to pay my bills so can’t give it up. I’m waiting to see the pain management clinic.
Hi, I was told it could be sjorgens syndrome and some osteoarthritis or fibromyalgia but apparently as I don’t appear depressed it’s unlikely fibromyalgia! I know I’ve said this before but I really feel there is a lot of making it up as they go. I took myself off pred last July and have had pain since the decrease from 5mg to zero. Taking a medication for the possible Sjorgens, salivary gland ultrasound was normal, blood levels raised again ( no surprise as no pred) . Taking high dose vitamin D as low levels found but hasn’t made a difference to pain. Why don’t they listen to the patient?
They made the depressed comment because latest research on Fibromyalgia shows depression as a significant symptom alongside the physical, particularly if the patient suffered a major trauma in childhood such as abuse or the death of a parent. I believe I developed PMR and restless legs because of extreme trauma which is ongoing. Of course someone can have fibromyalgia and not be depressed. These things should never be set in stone.
yes l have been on Prednisone since July 2021 and recently asked for a second opinion. I did this as although the prednisone helped significantly at first with the pain and stiffness, the pain whilst reduced never went away.
I saw a Pain Consultant who after testing, x-rays, MRI bloods and physical exam, told me the same thing. Your PMR has most probably burnt out and you have Fibromyalgia. It was his opinion that the two conditions had been running in parallel. It makes some degree of sense, but is annoying as l had voiced on numerous occasions that l suspected something else was going on!
Anyhow, l remain on a slow taper off the prednisone ,previous attempts have been unsuccessful, as my rheumatologist insisted on taking the dose down to quickly.
Due to RLS l haven’t fared well with the usual meds for Fibromyalgia and so remain in pain. I am hopeful of helping myself to some degree of relief by things like diet changes etc.
I await my appt at the pain clinic but won’t hold my breath in that happening any time soon!
It is becoming a common cry - but just being on more pred than they think you should be for more than 2 years is NOT a criterion for saying it is now fibro. Some people don't process pred the same as others and need a lot more to get the same response.
If the pain still responds to pred - I maintain it is probably not fibro. There are one or two on the forum who have been forced to a lower dose of pred on the grounds it isn't PMR - BUT a mg or 2 more allowst them a far better quality of life.
Experts are in the process of rewriting the PMR/GCA story and what they are saying may stop this nonsense about PMR only lasting 2 years. I may not have PMR after 20 years - but I do have a myalgic disorder that is pred responsive - and somewhere along the line the IL-6 cytokine is involved because Actemra/tocilizumab works well but not perfectly.
S o frustrating to keep reading " It must now be Fibromyalgia "....driving me mad that they just can't be bothered t o look fiurther, especially then leaving it to GP's!....I have had two leg collaspses in last few weeks, tremors, dizziness, fatigue, stiffness, pain..went to GP....had a range of blood tests, thought it might be thyroid or B12....no. GP says must be Fibro...Had a Synacthen test two weeks ago, 290, (on 5.5mg pred) not too good, but pred not helping with that result of course...
. Yesterday had third Zolendronic infusion....nurses kept asking if I was ok, they said I didn't look too good, told them my situation, not the infusion, they all said Fibro dosen't respond to steroids....not sure of my next move, don't think GP would refer me to Endo, but am thinking of going private, just to check out things....waking up shaking with tremors bothers me before I even attempt to walk.....
Could try again lowering pred.....but not sure if that's a good idea....I am a great believer in ruling things out to rule something in....and hopefully not Fibro!!
Yes, I agree, wish my GP thought the same!.....like many others on here it's getting harder to get pred, pharmacist from surgery rang and asked why I wanted the amount of pred that I did, he thought I would be on a lower dose, they never used to be like that.....just don't need it!...you have a fantastic system compared with ours........so jealous!
I have both, but luckily (I think) my fibro was diagnosed some years before PMR, and it’s easy for me to see the differences between the two. The lines do get blurred, for me, when it comes to fatigue…both of these diseases cause me lack of energy & severe fatigue, & I can’t honestly say which one…unless I up my pred in which case I’d find out. But no way I’m yo-yoing my pred intake! I’m unable to take any of the recommended pain meds for fibromyalgia, but they help many people…hopefully one will be you!! S x
Yes. I've been on Pred since Jan. 2022 for PMR. Finally got into our Pain Clinic back in November 2024 after a 2 year wait. "Pain Specialist " felt a few trigger points in my back. I also have severe osteoporosis. The 10 compression fractures in my spine cause spasms. He diagnosed fibromyalgia and fobbed me off back to my GP with a cocktail of possible pain meds, none of which I can take. Now GP will look at nothing but what he prescribed, plus a zip line ride to get me off Pred. I am now at 4 mg. I had to see an Internist because of a fainting spell a couple of weeks ago. Landed me at ER.After wearing a heart monitor for 24 hours and yesterday's stress test, it's not my heart. I asked HIM if we could do ACTH or basal cortisol tests. "We don't do them because they don't tell us much" says he. If I go into adrenal crisis I will sue them....or my family may have to. I'm having bad stomach issues, fatigue, craving for sweets or salt, extreme thirst. Soaking night sweats. A few things on the "adrenals" list. I've already put it to the GP. They are so focused on the heart, maybe missing the adrenals or the very deep pain in my upper left quandrant just below the ribs. I also have 2 (albeit small last April) splenic artery aneurysms, which no one is keeping an eye on. To them I probably sound like an old hypochondriac. GP says I "read too much". So fed up.
I know Pro. I thought they might actually investigate after the fainting spell. I asked for the tests. Asked for a CT scan of my stomach and esophagus because the GERD is causing swallowing issues. Now, I do go to a ENT for a scope of my throat in March, but I think I probably need an upper GI scope...only because I believe it's the acid chipping away at things. Strangely, the only thing that settles the acid is a half Imodium tablet. What needs must. I've tried to get back on the list for a different GP, but am told it's not possible because I already have one. Time marches on.
Thanks go to each of you for responding. I've had a confirmation I will see the Rheumatologist in person end of March. She confirms that all the various tests and scans over the past three months inc also gastroscopy for the stomach pain, have showed up nothing concerning, nothing sinister. I'm basically very healthy for my age, about to be 79 - apart from osteoporosis, scoliosis and spine degeneration with mechanical issues causing dull or severe pain, which are separate issues to deal with. I've managed to taper to 10.5mg preds and next week start of the slow taper to 10 and onwards toward 8.5 as the first big goal. And am being referred to Chelsea & Westminster Pain management team for an assessment as of yesterday. I'm not depressed. If anything I feel more hopeful, happier; determined to accept the situation and make the most of whatever I have. I've come to appreciate that rheumatology as a discipline has to deal with often indeterminate, hidden and changing factors, causing diagnosies to be variable and subject to the attitudes of those in charge of making them. In the beginning the preds gave me my life back if temporarily, but I was grateful for it.
Not told that but my diagnosis changed to various types of arthritis. One day my GP said I probably have fibromyalgia. Rhumatogist never mentions that and I don't either as I think he would like a reason to send Mr back to my GP and not have to deal with me. He himself has decided Inflammatory arthritis but I had pains in my whole arms and legs, not the joints and he put me on Methotrexate, then onto Biologics. I really do not know what is what anymore as I only see him no more than once a year. I also now have FND and that seems to mimic lot's of things.I have been seronegative with all tests but have sicca symptoms and have a P ANCA.
FND is the brain behaving as though it has been rewired the wrong way. You can act as though you have had a stroke but when tested the body can act normally, or limbs give way. It can effect most areas of the body.I didn't realise there were other vasculitis. I do have Sjogrens too and there's several group for it but not many on them.
Well p-anca usually says vasculitis but probably not of the PMR/GCA variety!! I'd take an inflammatory arthritis dx - then I could have Actemra in the UK too!!
It was in the letter to my GP about the P ANCA. I have asked how I would know if I had that but GP didn't know and on the odd occasion I have seen my rheumatologist there has been other things to discuss. My mother had vasculitis in her legs but we only knew the day she died and we found her in her care home room with blotches in her legs, she did have PMR and later GCA.
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