Hi, this is my first post so hope you all bear with me!
To go back to the beginning, in late 2021 I was eventually given a diagnosis of “it’s probably polymyalgia.” This was after my gp getting in touch with a rheumatologist to get some advice as my blood results all came back normal. My symptoms were typical of pmr and having spoken to my two sisters who were diagnosed with pmr ( eleven and eight years ago) they were pretty sure that I also had it. My gp wasn’t convinced to start with but eventually started me on 15mg of prednisone and within a couple of days almost all pain and stiffness had disappeared.
Fast forward to April 2023 (I’m on 4 mg by now) and I was asked my gp practice to come in for an assessment which I duly did but with a different gp this time. I was given a quick examination to test for muscle movement and was promptly told it was more likely Fibromyalgia I was suffering from but was told to stay on the 4mg of prednisone until I could get an appointment with a rheumatologist. After waiting 6 months I eventually saw a rheumatologist who asked me some questions and gave me a quick examination to be told it was more than likely to be fibro than pmr and requested that I gradually tapered off the steroids over the next few months as they don’t help with fibromyalgia. Fast forward to the middle of February this year and I am off steroids. I did notice when I got down to 2 mgs all my symptoms started re appearing and now that I have been off them completely for about 5 weeks now I am in total agony. I went to get my bloods checked a couple of weeks ago and went back to the gp who I saw initially back in 2021 to check the results. As I suspected they all came back normal (as I now know can happen in about 20% of people who can still have pmr). My gp gave me a very quick examination for muscle movement ( which I have to say was very painful at the time). Due to the fact my bloods were normal and the fact I was diagnosed with fibro from the rheumatologist he insisted on getting in touch with them to yet again get their opinion. Needless to say the reply didn’t go in my favour and I was refused steroids. What he did do was offer me amatriptalyne or tramadol which helps with fibromyalgia pain apparently but I told him in no uncertain terms I would not be taking them as I know the side effects of both and they can become addictive.
I cannot believe, given the amount of pain I am in (he knew this as he commented when he saw me struggling to walk into his surgery) that I came out of there feeling worse than when I went in.
I have another appointment to see him in 10 days and my husband is coming with me this time so shall wait and see what the outcome will be.
Sorry for the long winded post but felt it necessary in order to get the full picture.
ps I have since discovered that you can have pmr and fibro at the same time. Does anyone have any experience of this?
Thanks for reading my post.
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Kitforcats
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Sorry to hear this, but unfortunately it’s not as rare as we would hope. And yes many on have both PMR and Fibro.
As you are having so much issue with trying to get a GP to look past the blood tests scenarios - and not basing the diagnosis on symptoms… is it worth trying to a an one-off private appointment with a more enlightened and experienced rheumatologist.
Sorry to hear this - happens far more often than it should and quite why anyone thinks that PMR that responds to pred should suddenly morph into fibro is beyond me. After all - it isn't difficult to test the theory: do the symptoms respond to pred? Yes - it is PMR. No - it may be fibro,
There are several people on the forum with both - and all I have known say they know which is which in the pain stakes.
Where in the UK are you and is a one-off private appointment an option? But not just anyone - or you may end up with the same rubbish ...
Thankyou for the replys. Forgot to mention I am a 64 year old female who hails from Scotland. I also have some osteoarthritis in my lower spine.
Yes my thoughts exactly. If the steroids helped the pain first time round and came back when stopped then surely that tells you something but, according to my gp “not necessarily” which I couldn’t get my head around as he himself informed me that they don’t help with fibro.???
I have given it some thought about going private but thought I would give gp one more chance to finally see sense - after all isn’t he supposed to have a duty of care towards his patients?
They may be able to make some suggestions - you don't have the same freedoms for requesting referrals as in England - and I was told the other day there are next to no rheumies in Fife at present!! Where are you?
Yes, in roughly same situation as you. PMR 11 years, then told its Fibro. I am still being prescribed pred and taking 5mg, I have pain/ stiffness and deathly fatigue and lots of other symptoms, if I try to lower, pain much worse and feel so ill, if I have fibromyalgia why am I worse when lowering. I have hospital appointment tomorrow at OP clinic, will be certainly be one of my questions! Will post on here what they say….
Hello kitforcats! I have both fibro (since 2010) and PMR (diagnosed Oct 2023) together with GCA. 40 mg preds alleviated pain and stiffness overnight. Fibro flaring atm for which I'm taking painkillers only. After years of indifference from medics, once a positive biopsy for GCA was obtained, they took things very seriously indeed. Don't be fobbed off by GP or Rheumy. And yes, take hubby with you. All the best!
Hi Kitforcats. FM pain is more widespread and random, and can be quite sharp. It affects my biceps so that raising my arm is difficult. Also fingers, hands and feet get nasty fleeting twinges. There is also an all-over fluey feeling (no temperature) and problems remembering things. These final two alert me to the fact that it's flaring. Paracetamol and codeine relieve it to some extent.
Pretty similar to me. I only had CRP highish at the start but then nothing... maybe because I'm on prednisone or like you... just because. My first doctor and now my current doctor think I have PMR (and with headaches for a month now maybe GCA). The hospital rheumatologist says I haven't and that my illness and pain is from an unknown condition. They keep writing "Malignancy?" On my documents, but have yet to prove anything despite many tests and scans. I think they totally believe high inflammatory markers are necessary for PMR. This leaves me totally confused of course. I failed at tapering and symptoms came back worse. Now back at 20mg prednisone planning on tapering... again. Good luck.
What do you mean about be aware of headaches? I’ve asked on this forum about headaches on top of the head which are getting more frequent..now a bit more round the whole head? Seem to be worse lying down. On 2mgs pred..lowering gently to 1.5. Today so exhausted .. on sofa nearly all day! Bloods normal!!! Gp said keep a headache diary. Seems random but bit more often now.
JeremyNZ says -My first doctor and now my current doctor think I have PMR (and with headaches for a month now maybe GCA)…so I just reminded him to make sure his doctors were aware and doing something about the headaches.
You have been advised by your GP to keep a headache diary- which seems eminently sensible.
headaches, often with severe pain and tenderness over the temples and the scalp – it may be painful to brush your hair or to shave. Headaches from GCA can cause pain elsewhere in the head too.
thickening or tenderness of the blood vessels at your temples
pain in the jaw or tongue when chewing
severe tiredness that affects your quality of life, otherwise known as fatigue
flu-like symptoms, such as a mild fever
sweats, during the day or night
weight loss
double vision
earache
rarely, loss of sight, which can occur suddenly. This may be partial, but it can sometimes be total. It’s usually temporary in the early stages.
All bloods ok! Yes I can’t see a pattern as yet.. thanks for replies. Certainly acute fatigue!?! But at 2 could be adrenals couldn’t it. I had one wonderful day on 1.5… then awful again on 2 .. so weird.
Felt so jolly .. but didn’t go bananas.. just enjoyed the day.. such a relief as expected to be lying on the sofa all day. I’m doing one day a week at the moment. Then will do 2 days a week.. onwards!!!
What do you mean by "failed at tapering"? You are never heading relentlessly to zero - you are looking for the lowest effective dose, the lowest dose that gives the same relief of symptoms as the starting dose did. Once you find that lowest effective dose, going any lower will result in a return of symptoms - left untreated you will be back where you started - and it often feels worse simply because you had a period of relief.
Stick with us with your tapering and we'll explain how to get as low as possible - though it may not be entirely off pred. And do watch those headaches - hope your rheumy doesn't find out he's wrong at your expense. Any visual symptoms or jaw pain when chewing and straight to the sensible doctor!
You know, it felt like the pains had gone. I was doing 1mg drops per week ON INSTRUCTION but when I hit 8mg I was suddenly 'attacked' by the 'PMR like' pains most viciously. Except now with a perpetual headache and testicles, go figure. I had to go to 30mg pred for relief but have now dropped to 20. I'm being tested for pheochromocytosys now. Guess Ill be negative. No test ever shows anything. I've had a headache now for a month. Hospital says I don't have GCA. I don't know what is happening or who to believe. I tend to think I have PMR but can't explain the extra symptoms.
Did you mean testicles? That's a bit random for PMR symptoms! Where is the headache? And why phaeochromocytoma - irregular hypertensive episodes fair enough, but hardly a usual cause of PMR symptoms.
PMR isn't the disease of course - it is the name for a set of symptoms due to an underlying disorder, But it is unreasonable to simply say "malignancy" and leave the patient to stew. Especially if pred works well. In the early stages (first couple of years by our standards) getting stuck at just under 10mg and symptoms returning is not unusual so by no means proof it isn't PMR.
I don't understand all these things. When 'PMR' struck me the symptoms were close to expected for PMR. Shoulder muscles, sometimes neck, buttocks, groin, and thighs. I was diagnosed in the UK. I could scarcely walk or raise my arms. No pain killer did anything - but prednisone worked. Then later I developed other symptoms which did not fit PMR so well. Some said cause by prednisone. Others have pointed elsewhere. My calves felt very stiff and sore, my testicles started to ache. Much later (8 months) the headache started and would come coincident with the testicular ache esp later in the day. My last hope for a more certain diagnosis is 22 April when I have an appointment with a top rheumatology /vascular specialist here in New Zealand. If no joy there... I'll just self medicate till the outcome.
If you have developed large vessel vasculitis that COULD theoretically cause your other symptoms - poor blood supply to legs and the pelvic area would account for it. I had a few very GCA-ish symptoms for a few months but they then resolved - but they can be in that sort of region. Has anyone offered/suggested a PET-CT?
Your almost instant relief from pain and stiffness on 15mg of Pred is eactly what I experienced. And like you, my blood markers weren't particularly raised and it was months before I was prescribed Pred with the theory that if it works, it probably is PMR and if it doesn't, it probably isn't. My GP referred me to Rheumatology and the response came back 'textbook case, responding to treatment, we don't want to see him'.
If the Pred works and you are not experiencing serious side effects, I think you should be very insistent at your next meeting that you need to go back on it. I would prepare a tapering plan showing how you intend to reduce the dose and ask for 3 monthly consultations to discuss how it is going. I produced one and gave it my GP and she was happy to prescribe accordingly.
Yes, I have fibro & PMR. I was diagnosed with Fibro 12 years ago, & then with PMR 4 years ago. I take tramadol & amitryptylline (but neither were prescribed for fibro, Ihave other diseases that they help), but they help fibro. I do not feel I am addicted to either, though, they are just drugs which help, so I’m grateful for them. If you are in severe pain & need painkillers I found tramadol a good one, if you’d like a muscle relaxant to help you getting to sleep, them amitryptylline is good. I was on 3 hours sleep a night for years, & it’s no fun. If you don’t need either, then obviously don’t try them!! If I could choose one of the two, I would prefer to have fibro!! Do you have any specific questions relating to having both, I’m happy to help. Fibro was diagnosed by a GP, but sent straight to rheumy, who agreed. Later I went to rheumy for osteoarthritis & she did tests again for fibro & agreed. Then a third rheumy (this time for hypermobility) & he did the tests for fibro & I still have it. I was not referred to a rheumy for PMR, it’s easily handled by a GP, I feel, & we manage the levels of steroids & tapering better between us, especially with long waits for rheumy. High amounts of steroids gives me bags of energy & a ‘false high’ so they feel like they help with fibro (& everything else, eg OA), but down on the lower levels, the OA is much worse & the fibro is rearing it’s ugly head!!
Hi, it took me 18 months to get diagnosed because I was “too young”. My PMR started at age 48. I differ from you though in that there was plenty of inflammation in my blood. Eventually the Rheumy sent me for a PET/CT scan and they’re it was. It’s all so incredibly frustrating! Surely, SURELY, the fact that the steroids helped you so much, it isn’t Fibro because Fibro isn’t inflammatory by nature. Ugh! I really feel for you.
Thanks for your reply. Yes, to me it’s not rocket science! But it feels like I’m knocking my head off a brick wall trying to explain to him whist taking prednisone my symptoms basically vanished. We will see what the next appointment brings.
Hello again, I had my second gp appointment today and am no further forward. He is still refusing to put me back on steroids as he doesn’t believe I have pmr. When I asked him what he thought was causing all my pain and stiffness he thought it might be osteoarthritis as I do have this in my neck and lower back. He then went on to say that Fybro has similar symptoms to pmr but, as I pointed out to him steroids do not treat Fybro because it’s not an inflammatory condition. I felt like we were going round in circles and coming up with the same conclusion - I don’t have pmr according to him. He is going to get in touch with the rheumatologist again but I doubt very much they will change their view as they seem determined that it’s fibro. Think the only option for me is going private to resolve this situation although I don’t see why I should have to resort to this.
Probably is the only option - and no, you shouldn't have to but in the face of such intransigence and refusal to even try pred to see if it works, what can you do? Where in the UK are you?
Ah, makes finding alternatives difficult with the Scottish differences in rules. Are you in contact with the Scottish charity? Maybe their helpline can suggest something.
In England you can choose to whom you want to be referred - and in theory it can be pretty much anywhere, in practice with the constraints in the NHS many hospitals are refusing referrals from outside their catchment area. In Scotland it is dictated where your GP can refer you. Of course, when you go privately that doesn't apply. But it might be worth looking for advice from members of the Scottish charity as to who there is who is good with PMR. Not all rheumies take PMR seriously - and some are far better than others.
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How painful can PMR get ? 
Please help 😣 
Prefer pain to steroids!
PMR and CLL
Update on blood test results.
