Thanks to all who replied to my post. I was originally diagnosed with GCA in February 2019 and started on 60mgs, preds then very slowly reducing as I found it was much easierand less stressful that way. I had a few flare ups along the way going up then reducing etc. I thought I was having a flareupa few weeks ago. Usual symptoms, pain in temple, blurry vision and pain when I was eating. I was doing so well and felt nearly back to my old self after a very traumatic 6 months . My GP agreed but sent me for blood tests for confirmation so when they came back ok he decided to send me back to the hospital instead of waiting until November. Then this all kicked off!!
I do have osteoarthritis in many places but I have been managing that for many, many years.
I looked up the qualifications for the rheumy I saw last week and they were impressive , also various reviews about him but I was not at all impressed.
How could he make a diagnosis of fibromyalgia after asking a few questions and squeezing me in a few areas and making me squeal??!!
As i said previously I'm gobsmacked. I suppose I must wait until August to see my usual rheumy.
Until then I'll reduce slowly and keep chatting to my GP who is wonderful
Thanks for listening. Take care everyone xx
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piggypink
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Sensible decision. This Rheumatologist may be excellent on rheumatic and muscular, skeletal conditions. I tend to think that PMR/GCA and various Vascular conditions are another specialism altogether and sit slightly uncomfortably within a Rheumatologist’s remit. Luckily some of us have Rheumatologists that are expert and up to date in all aspects.Do be alert for any visual symptoms or an increase in the jaw claudication and headaches and seek emergency care if you are worried. I have a well equipped optician and pay to have a complete eye examination every few months, that I pay for. It puts my mind at rest.
In have fibro and it does tend to muddy the waters trying to know what's causing the pain. The symptoms you describe above do sound more GCA ish though. It's an awful worry for you to have to wait til August though maybe a visit to emergency dept if things get any worse. I hope it at least settles down til you get your rheumy visit. Some of these rheumys need to listen to their patients properly and yes I'm speaking from experience. Let us know how you are doing.
Sounds like a plan - some of them are VERY arrogant and since he didn't see you originally that is the only word that can be used for him I think. It is the advantage of at least trying to get a positive biopsy but it is a problem quite a lot face at a later date when the diagnosis was made on symptoms following a negative biopsy which DOESN'T mean it definitely isn't GCA,
Good for you…but. Just to warn you…the test for fibromyalgia is to prod you & see which places prodded make you squeal. I’ve been diagnosed in 3 different hospitals & the same procedure each time!! Plus asking the patient where they feel pain, & if they have symptoms (but many cross over with PMR, like braving fog, fatigue etc).
My BIL has a fibro diagnosis and I've tried to talk to him about the possibility that it might be PMR not fibro but he refuses to look into this. Frankly, I don't understand why anyone would not want to at least rule out a PMR diagnosis since it's very treatable. But I think that fibro gets more public attention then does PMR so it's the "go-to" diagnosis for anyone with generalized pain.
As I just said fibro never gets a mention despite the trigger points the rheumy , the pain specialist and the physios can find with unerring accuracy! And they each have something to offer to reduce the pain,
I had a GP diagnose me with fibro because I was complaining of pain on my right side rib area. An x-ray didn't indicate a fracture so this was her diagnosis. Turns out my rib was fractured which showed up later in a CT. I think this diagnosis is given to people willy nilly here in the US when the doctor can't find any other reason. But I'm sure my opinion is jaded given my own experience.
I'm sure so many people, especially young ones, are fobbed off with oh it's fibromyalgia. I have come across several cases myself which turned out to be PMR or other autoimmune things. Or it's possible to have several things going on at once, including but not exclusively fibromyalgia. Some doctors still don't even believe fibromyalgia exists
I’d much prefer to have fibro than PMR (I have both). I’m unlucky. & rare, in that I can’t take thefibro drugs, but I had fibro & managed ten years of working a 60 hours week, covering the whole of Europe, in a highly stressful pharmaceutical environment. I couldn't have done that with PMR…& the symptoms are different. Fibro gets a worse press than PMR…still carries a stigma that it could be in your head!! If he’s had the ‘prodding’ tests in various locations & it was positive, it’s fibro, I think!
Yes, but with fibro nowadays I think you have to test positive for a larger percentage. Also, with fibro i didn’t get any of the upper arms & shoulders pain at all, the fatigue was different, one of my new symptoms I took to the doctor was the heavy head sweats…which, for me, were caused by the disease, not the steroids, nor the hot/cold weather. The ‘feeling’ youhave with one is different from the other, not something easy to describe. I agree there are crossovers, but I think there’s enough differences for a gp to be able to make a diagnosis. Maybe more people have both with your scream outloud locations overlap? Oh, & I had to have steroid treatment quite regularly in the winters for chest infections, I know the doses only lasted about two weeks, but a high start as my body had got used to them…& none of the fibro pain was helped by the steroids…whereas, with PMR, within 2 days the PMR pains were so much improved: perhaps that’s the diagnostic test…if somebody doesn’t agree with the doctors diagnosis of fibro, put them on high dose of steroids & see if all the pains disappear???
Um…surprises me…however if a person has, eg, fibro & arthritis, like I did, but doesn’t know it’s arthritis…then the steroids help the arthritis! As I tapered my pred, certain pains started & got worse…I thought they were fibro & didn’t understand it, but then diagnosed with OA, after that inflammatory arthritis, now, 1 year on, probable sero negative RA!! Difficult to tell…I have to think hard to tell what pain relates to which of the umpteen diseases I’ve been so greedily starting in past years!! Hope you’re feeling a bit better nowadays, S xx
GPs often don't even think of the possibility of PMR when making a dx, in my case because I was so young (51). Also to be fair, it isn't easy to dx PMR, there's no conclusive test apart from PET Ct scans and GPs can't order them, and many people are initially misdiagnosed according to papers like Quick and Kirwen, its a case of do it by exclusion and see if steroids work for most GPs. My gP had never come across case of PMR before, he only recognised the symptoms eventually because his father in law had recently been dx with it!
I just think that with PMR there is a good chance of it going into remission. I don't think fibro does. But I'll take your word that fibro is better to have then PMR.
Well, my fibro certainly hasn’t, that’s for sure! But I don’t get deathly fatigue, which I get if my body is 1mg lower on steroids, no moon face, no weight increase…in other words no steroids hassle! But also I don’t tend to get fibro flare ups…it’s the same all the time…but I get PMR flare ups…right out of the blue…well, if I’m honest, it’s because I continually overdo everything, & have very little rest!!
Yes I can understand that. It's hard not to overdo, especially on a good day. And then because you overdo one day it takes a couple of days to recoup. 👍
I was reading that they think in the US they have got a blood test that can check for fibro. It is in its test phase at the moment, but that should make a world of difference if it works.
Wish they would - I think that is the greatest unmet need, not another drug to be honest. If they are looking for a new drug it is going to be a biologic - and NICE aren't going to approve that for PMR because of the cost - unless it is a cure that works within a few months.
Sorry - how do you do that? The side effects are almost entirely due to the amount of corticosteroid present in the body - which is why the body shuts down production of its endogenous corticosteroid, cortisol, because it knows that there is already plenty there and no more is required. It does its best.
I don't know, I just vaguely recall there were some drugs people in the OMERACT meetings who said they were working on it. Maybe a question for SM in her talk at the AGM?
Very interesting, piglets, may stop those who think it’s ‘all in the mind’.would love to have a test & show result to two doctors & a senior nurse who didn’t think it’s a disease! I wanted each of them to have it, just for a month, then look me in the face & say that again!!
I thought they had found evidence it is real - might even be antibodies. And it isn't quite the way a lot of think the original definition was - even the guy who described it has said he wishes he hadn't!
Thanks! Just been diagnosed with spondylitis, so looks like something of interest…no time tonight, tomorrow I’m rebuilding two motorhome seats (driver & passenger) & Mobil hairdresser coming! Sooooon, though, I may have a ten free minutes ! S x
It’s a tough job, but somebody has to hold them, suspended in the air above their base while the garage guy attaches an earth wire & replugs the airbag leads back in…so I’m the one left holding the baby…I mean the seats!! No room inside the cab for a third person, c’est la vie..atm!
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Tapering after a flare. It wasn't just Carpal Tunnel syndrome!
Flare
GCA temple artritis ?
GCA returning
Is it PMR, or GCA or neither? 
