Posted , 6 users are following.
I'm a 60yr old male diagnosed three years ago with Fibromyalgia. I'd had the FM symptoms for over 12 years. Recent reading, and educating myself to the symptoms of Giant Cell Arthritis & Polymyalgia Rheumatica, has me now wondering if my FM has been a misdiagnosis?
Twenty years ago I had a sudden onset of pain and immobility, starting with right thumb pain that spread rapidly to every arm and hand joint, and debilitating both arms within hours. Within a day I had left sided head pain, even causing excruciating episodes of pain deep within my left ear canal. I was treated as sera-negative poly arthritis by my GP who advised me to be admitted to hospital, and prescribed 40mg prednisolone daily for 8 months, which reduced over the following year. I wonder now if my FM symptoms are actually the ongoing residual symptoms of misdiagnosed GCA or PMR? Or even a combination of the three conditions? Now I don't know whether I should discuss my concerns with my GP or not? I'm genuinely not a hypochondriac at all, but more concerned that this is how I'll be categorised. Sorry for the lengthy post.
Any advice and comments welcome. Thank you.
0 likes, 9 replies
Rimmy Houndy-Man
Posted
Of course you should discuss this with your GP - there are so many overlapping symptoms with many illnesses especially with Polymyalgia and Fibromyalgia and as hard as they try doctors cannot be perfect. Even if just for your 'peace of mind' you need to do this - this certainly should not make you feel like a 'hypochondriac' and if you experience any such condescension then see someone else to help you get to the possible causes of your current symptoms. At least that is what I would do.
Best wishes to you.
Houndy-Man Rimmy
Posted
Thanks Rimmy. It's what I think I would say to someone who asked my same question. Always harder to take my own advice than give it. Thanks again. I'll make an appointment with my GP. Best wishes.
EileenH Houndy-Man
Posted
You certainly should discuss the concerns - that's what they are there for. And possibly the GP may agree to a week's trial of 15-20mg pred - if it is PMR it will improve a lot (maybe not 100% but notably) and if it is fibro it won't. Simple as that.
Houndy-Man EileenH
Posted
Thanks Eileen. I'll take the advice and discuss with my GP. Many thanks.
denisep911 Houndy-Man
Posted
I have both so it's possible that you do as well
Houndy-Man denisep911
Posted
Thanks Denise. I'll discuss this with my GP after yours and previous replies. If it is also PMR or GCA that I have, or have had, it was 20 years ago when it flared so I doubt my GP would treat me for it now. It's more to settle my wondering 'if'. Since that initial flare I've never been able to lose the altered sensation around my face and scalp, affecting the left side only.
It will mainly provide me a reason for the cause of my condition and symptoms. Thank you again for your comments. Best wishes
EileenH Houndy-Man
Posted
There is only any point "treating" what you have now. Pred cures nothing - it manages the symptoms to allow a better quality of life. If the symptoms have gone - it is unlikely anyone would "treat".
denisep911
Posted
It's sometimes hard for me to detect a difference of the disease
But I feel like I'm getting better all the time with research, discussion groups and trial and error every one is different
Good luck to you. This group is a great one 😍
Rimmy denisep911
Posted
Yes this is a very informative group which I have just 'joined'. I was originally diagnosed (tentatively) with Fibromyalgia - in some ways it all seemed to 'fit' - the trigger of my sister's death, no elevation in ESR & CRPs - but otherwise I always suspected Polymyalgia. I toughed it out for a few months but reading this forum and tons of other reputable info I realised it WAS much more likely to be Poly and returned a third time to my GP. After only two days on Pred I feel incredible - and three stone 'lighter' without the stiffness/pain. I am also hesitant of course as side-effects look unpleasant but will watch my diet and can get more exercise again. I still have to accept this is a 'long-term deal' though and it will be complicated no matter what I do. Also interesting this affects Caucasian women most often and of Northern European descent (I have Irish/Welsh/English ancestry).
Anyway hello to everyone on the forum -I have really appreciated reading your insights and experiences which encouraged me to persevere with this (now correct) diagnosis. Advocating for your own health is vital I think and we should never feel 'guilty' or 'difficult' when trying to do so.
Best wishes
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