I went to see my Rheumy last week- I have GCA -& am down to 7.5 mg of Pred. I asked him if the aches & pains I was getting ( particularly in my back, hips, sometimes knees & hands) & the overwhelming fatigue some days could be my adrenal glands starting to kick in. Without asking me anything, he just said 'no, it's Fibromyalgia'. I said ' no, I haven't got that' & he just replied ' yes, that's what it is'. I was shocked to say the least- no questions, nothing & he just gave me the NHS leaflet on it. That was it! Reading up about it, I'm not convinced- what is the general opinion of this?! I have days when I get very little pain & other days when it's worse but never to the point where I can't do things, so I still think it's my adrenals!
Fibromyalgia?: I went to see my Rheumy last week- I... - PMRGCAuk
Fibromyalgia?
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Janeval
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DorsetLadyPMRGCAuk volunteer
Fatigue certainly could be adrenals… but it could also be Fibro [or any autoimmune disease in all honesty].
As for the aches and pains could Fibro - or PMR joining in,. Maybe try an increase in Pred for a week or so to see if that makes any difference. If it helps, it could be adrenals or PMR….
You might have the tricky trio. I had just Fibro and low adrenals as far as I can tell. People’s experiences of both vary. At what dose did these pains start? If your adrenal glands start to work you don’t get any symptoms, it when they don’t that the trouble starts. For me 7.5mg was too high for the adrenal axis to realise it was time to start a bit and too low to keep me with enough cortisol to run my body for a day. Did your problems start at 7.5mg or before? If it was much before, it might not be low adrenal function.
Low adrenal function have me fluey aches in the muscles and joint areas not pains in specific parts. Fibro felt like what I called cloud pain as it was painful but I couldn’t place it except when I pressed one of the Fibro trigger points and then it felt like a bee sting that would linger after pressing and then die down. It is so difficult trying to describe pain because our perceptions of it may be unlike someone else’s.
Rubbish consultant though.
Pains started at a higher dose - probably when I was on about 9/10 mg. I do yoga every day & I've I noticed I couldn't get in the positions I wanted to because of the pain! I've no idea what the trigger points are- he never tested or looked at me atall, so this is why I was a bit taken aback at his diagnosis. I'm ok when I'm not moving but as soon as I try to move into different positions that's when I feel it. I had an x ray on my pelvis & knees this week so will see if that brings up anything- or not- but I'm reluctant to go back up with the Pred as I also wondered if it's PMR or even just arthritis? I'll see if the x rays show anything & then I'll see if I can get an appointment with my GP ( maybe by next Xmas?!!) - not seen him yet, impossible trying to get an appointment.
Is it muscles or joints that are hurting and is it in specific spots?
PMRproAmbassador
************ - what a silly assumption. A patient with a diagnosis of GCA who develops such symptoms as they taper pred almost certainly doesn't have FIBROmyalgia but POLYmyalgia rheumatica since IT can be a symptom on the spectrum of GCA/LVV/PMR. And at the dose? Poor adrenal function - especially as it varies. You probably feel worse on or after busier days.
Oh - and the fibro "trigger points" can also coincide with the myofascial pain syndrome trigger points so just because they count the trigger points, it is still NOT proof it is fibro,
Sorry to interrupt. But "You probably feel worse on or after busier days." ? That is precisely what I do after busier days. Pain, fatigue ect. I am down to 10 mg (as I have been before). Could it still be adrenals even on 10 mg? I am a very busy person when I can and also have some stressors with a sick adult child, that gives days with worry. Thanks 
Could be both - with PMR itself you need to pace to avoid that rollercoaster of how you feel after overdoing things and the same applies to poor or rather, inadequate, adrenal function. Even while on higher doses of pred than is normally associated with adrenal insufficiency, your adrenal glands are unable to respond to the demands that are natural with business and the stress of illnes, whether it is yours or that of a sick child of any age. Under normal conditions, the adrenal glands produce spikes of cortisol to help the body deal with such events - when function is damped by the presence of exogenous corticosteroid (the pred dose) they can't respond in the same way. A bit like putting your foot on the accelerator in the car but there is no response from the engine.
in your experience can Fibro step in and join in with PMR? or follow it when it is on its way out?
I am very sceptical about fibro versus PMR. Don't get me wrong - fibro is a real thing, not dismissing it at all. But I do not believe that PMR morphs into fibro in the vast majority of cases. It may turn up to play as well, we have quite a few on the forum with both and for a lot the fibro was there first. Most say they can tell the difference between the symptoms due to fibro and those due to PMR. Not least because pred works for PMR - so you can minimise those symptoms.
thanks I have a couple of additional pains, could be muscle damage due to overdoing it of course, (dragging heavy railings around in a storm to stop them blowing into the road!) but it doesn't seem to be affected by PRED, and is worse at night, so paracetamol at least lets me sleep thru it!
Yes, exactly what I thought! Yes, I do feel worse after a busy day or more activity. Very frustrating because I know if I do more one day, then I will have more pain & fatigue the following day. It seems to be my lower back, one hip & my hands which are the worst.
PACING!!!!!!!!!!!!
What is pacing, I haven’t learned that 4years in , I have just had extensive spinal canal surgery a week ago so I am hoping to learn something this time round, one hopes.lol.x
Have you read this?
healthunlocked.com/pmrgcauk......
Explanations and advice ... I can't help more than that!
Very good read numbers 1 , 2 .6,9,12,13 definitely apply to me, I have got to slow down as I can not have this operation again, too risky. When they gave common sense out I wasn’t even in the room.
Serious question - or tongue in cheek? 😳
Both.
When you get to these lower doses that are challenging your own cortisol production and likely autoimmune inflammation, pacing is an inconvenient necessity for many. It comes at a time when one expects or has been led to believe are the sunny uplands of the skip to zero. You get the picture regards PMR comment from the liberal use of * by PMRPro.
Same here.. I have to plan to do things in alternate days.
My Rheumy never even asked me any questions about where the pain was, when it came on, if it was constant- absolutely nothing! When he came out with the statement of ' you have fibromyalgia' I just said ' no, I haven't' & he just told me that's what it was! Unbelievable really isn't it?! I'll go & see my GP if I can get an appointment!!
Pffft!! Wish I knew where they "learn" their customer relations "skills". Can see through skin, bone, see non-existent swelling and inflammation ...
Must have one of them there new-fangled super duper crystal balls… second one today 😏
I want one too!
Wonder if Amazon do them..🤣😂
I would like one please! Do you think they do 3 for the price of 2😂
Worth a try!
As they seem to be quite common in certain occupations do you think they are listed under Medical Appliances? 🧐
Of course they are! 😂
They don’t learn, they should be stacking shelves in Tesco.
Sometimes that would be too good for them!!!
do you have the same rubbish Rheumy I have, or are they all like that? I've been reading up on Ankylosing Spondylitis since my biological father had it. There is a lot of info on American websites explaining that it used to be thought that women don't get it bit now they realise women do get it just as much as men but with different manifestations (pain in upper spine, shoulders, don't necessarily have significantly raised CRP, don't have damage that shows in xrays) hence women rarely get diagnosed with it even if they have ank spon. I was particularly interested to hear that women with Ank Spon are most often misdiagnosed as having fibromyalgia. I'm not sure if the medical profession in the UK are up to speed on this as the only info I can find about Ank Spon in females is from the US.
Sorry to go off at tangent but it is the regular assumption that any female with pain has Fibromyalgia which really annoys me.
Not all - but there are a lot of them!
Have you got the gene associated with it, HLA B27 - very likely if your biological father had it, I have an aunt who probably had it - I'm sure she mentioned it as the reason for being in a wheelchair but it was after I had "left the fold" of that neck of the woods/family!
😂 what can I say, but that I agree!!
I was also diagnosed by my rheumatologist with AI secondary fibromyalgia. (Apparently it’s very common that patients with AI disease develop fibro as a secondary issue?). I was fatigued, getting breathless and exhausted with very little cause and my mood was very low with it all; I struggled to describe any specific areas of pain as I was too exhausted and I accepted the diagnosis. Couple of days later I had an unexplained minor chest pain in my back (years ago I had a pulmonary embolism which began in a similar way so I rang the GP out of an abundance of caution) … GP sent me for an XRay at the day unit who then did a CT scan and the ‘fibro’ turned out to be LVV. This is a good news story as I was quickly put onto steroid infusions and a course of TCZ injections followed - which were effective 😊 Sometimes it’s not fibro 🤪
Exactly - and they are often far too keen to use it as a get-out clause for doing anything. And so they CREATE a "common" associated condition that is a figment of their imaginations. In your case, the LVV was causing PMR-type symptoms that they dismissed as fibro because that way they couldn't be expected to devote time to a condition that can't be cured and is difficult to manage. Unlike PMR which does respond to something.
It’s been interesting reading everyone’s posts and I have no suggestions but I saw the rheumatologist early January (was anxious about it and posted for reassurance which I got so thanks again everyone). The dr wasn’t convinced I now have PMR as on 5mgs I had virtually no pain. Had ultrasound on my feet and no inflammation found, a PET scan again no inflammation found. I’ve been reducing my steroids as she will do this anyhow and I’d rather be in charge of my own fate and now on 1mgs. Struggling to get up in the morning and have painful elbows, shoulders and hips with some leg pain and foot pain . I’m sure in April when I go back for a review the dr will say I have fibromyalgia. My disabled adult daughter and my mother have been given the same diagnosis over last two years. My mother has had arthritis since her early 40’s so not sure how they got to fibro. I’m beginning to think it’s the new condition to offer when they don’t really know what’s wrong with someone.
"I’m beginning to think it’s the new condition to offer when they don’t really know what’s wrong with someone."
Never a truer word! And it fits with their unreasonable fear of pred. OF COURSE you were OK at 5mg, it was plenty to manage the inflammation. At what dose did the pain reappear? Those sites are typical of PMR ...
By 3.5 mg I started having pain again. Am coping so it’s not like it was but it’s just all rubbish really. I’ll let you know the outcome of my review in April.
If you are at too low a dose it will just get worse - so do watch out.
Will do, thanks
it does rather seem to be the label they like to pop out if there is pain but not much inflammation! Box ticking exercise - such a waste of all that medical training - a monkey could do the job.
The logical thought to start with would be PMR in my opinion.
I was appalled to be given a fibromyalgia leaflet when I eventually got to see a Rheumy. It appears the NHS likes everything to be fibromyalgia as it makes their life easier and they don't have to give you steroids. I'm so fed up with being told I have this when I feel certain I don't that I'm probably going to pay to see a different Rheumy who has been recommended to me by a friend who had Polymyalgia (which the surgery had refused to diagnose; same surgery as me; this friend incidentally is a retired GP!)
Reading the booklet on Fibromyalgia just confirmed even more to me that I don't have that. The only thing I have that ticks a fibromyalgia box is soft tissue pain - I don't have any of the other symptoms.
Hi, I have Fibromyalgia, PMR, Osteoarthritis and Osteoporosis and I am in pain one way or another most days, generally, back, hips, wrist and thumb areas, generally worse after being busy or walking to far on the good days and the following days have to sit and do nowt!
I, too, like Songbird have fibro, PMR, OA & a host of other stuff. I’m in pain every day, despite strong painkillers & patches. I notice some rheumies don’t use the pressure points for diagnosing fibro now, & there aren’t photos all over the web now! I heard it was because patients were self diagnosing fibro with the diagrams, I guess they had more patients, & they can’t cope with the numbers now! They usually prod & poke you in Many places, the score is 18, & the pressure point diagrams should still be around on the web, but sounds as if they used a crystal ball instead. Sadly, this doesnt mean you don’t have fibro. But it doesn’t help confirm you have. Thinking just about my fibro, I can do housework, walking, & stuff…but if I do it today, tomorrow there will be increased pain & stiffness, & the overwhelming fatigue will be more overwhelming. For me, having fibro is like trying to walk & exist walking through treacle…up a steep hill! Hard going!! And there’s a new booklet on fibro, the last rheumy tried to give me one, but I already had it. Had fibro 15 years. The only thing I can think may help is if people ask the rheumies to test all the pressure points for fibro…& then ask for the test result. At least it’s something tangible??? Just a thought.
Did he test any of your trigger points and explain why he assumed it was fibromyalgia ?
When I was diagnosed with Fibro 27 years ago, all my trigger points were on fire when pressed. My Dr gave me a good explanation of why he thought it was Fibro, and it did describe exactly what I was suffering.
Make a list of questions for him , that you would like answered. He needs to communicate on a better level .
No, be never examined me or tested anything! That's why I said to him- I haven't got that! I'm ignoring the diagnosis as I think he said the first thing that came into his head. I'm certainly not convinced atall.
Not acceptable.
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