Being tested for polymaylgia Rheumatica
Posted , 10 users are following.
hi there,
Ive had bloods done today too see if i have this disease in only 39 but i guess can be possible at any age...
my symptoms started 10 months ago my arms ached sooo much then i got hit with servere fatigue. also experienced bad headaches and jaw pain that lasted about 2 months. Now i have other symptoms that come and go such as back shoulder neck arm pelvic and hip pain ... sometimes its a burning sensation and then i ache its extremely painful my knees also ache at times.. i have become depressed because of this and my quality of life isnt the same as it once was ... i just came across this site as i have done alot of research about this disease ... although i have been diagnosed as yet ... anyone have these same symptoms ???? please help as i am going crazy
1 like, 35 replies
frances80868 tanya25926
Posted
You've got it. Yes, you're young. Your doctor should start you on a course of Prednisone, the only thing that really works. Read this site for all kinds of wonderful advise. There is light ahead but it will take you awhile to get there.
tanya25926 frances80868
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EileenH tanya25926
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Whatever you have it does sound as if you have some form of autoimmune disorder. PMR is just the name given to the symptoms of an underlying illness and there are several so it may not be the PMR we talk about here - although you do sound to have fairly classical symptoms including some of GCA. There is a version that occurs in under 40s called Takayasu's arteritis.
Is this your GP who is doing the blood tests? Even if HE thinks it is PMR you DO need to see a specialist because you are really quite unusual and there are several things it could be. Your doctor may find this paper interesting (you too if it comes to that!):
https://academic.oup.com/rheumatology/article/56/4/506/2631560
I was delighted to see it (the first author is my rheumy now) because I have believed for several years that the concept of PMR/GCA is kept far too narrow and it overlaps a lot. This confirms my belief!
frances80868 EileenH
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I stand corrected and rightfully so. I read the suggested paper and am more bewildered than ever. However, so far, I don't see the GCA as a looming threat. Thank you so much for sharing your knowledge. I just wish things could be a bit more clear cut ... but that's the body for you.
tanya25926 EileenH
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hi thanks for replying i believe i have something some kind of disorder i have looked Takayasus arteritis sounds like it could be this .. it really could be anything as alot of my symptoms mimic other autoimmune diseases and yes there are so many of them. thank you for sharing the paper very interesting read 😀. i get my blood results tomorrow i hope i get some answers then as too what is going on ...
ptolemy tanya25926
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tanya25926 ptolemy
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thanks for replying i got my blood tests back and nothing showed up .. maybe i am one of those 20% of people that it doesnt show up in . im really not sure what too do or where too go from here its hard to get a doctor too actually listen . hopefully ill get some answers soon thanks
Reeceregan tanya25926
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adette01750 tanya25926
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I am sorry you are feeling so unwell, I do feel for you as we all do.
I am wondering how your blood results were? Are you any nearer to your diagnosis?
Take care
Xx
tanya25926 adette01750
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thanks for replying i got my blood tests back and they show nothing of concern so apparently its all in my head... my doctor has sugguested i go and see a psychiatrist yep thats the answer too all my health issues not... ive decided too go and see a natropath as no doctor seems too listen . i know my own body and something is not right its awful too feel this way day in day out .. hopefully i find some answers soon .
EileenH tanya25926
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Unfortunately, if it is PMR a naturopath is unlikely to be able to do much since only pred reliably relieves the symptoms. But good luck.
adette01750 tanya25926
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Hi Tanya,
it is so frustrating when the doctors don't listen to us.
Yes you could be one of the 20% that have the disease but don't have raised markers.
My CRP has never been higher than 11, and so the doctors have always sat on the fence re my diagnosis, but a GP saw me in such a state she started me on steroids and they had to follow the diagnosis reluctantly as I had been on them too long before I saw the rheumatology doctors.
i do wish you all the very best, but keep plugging away , we do know our own bodies!!!
Best wishes
Adette
EileenH adette01750
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The point really is that Tanya is VERY young to be considered for PMR ( 39 when the guidelines say "over 50" and was always going to have problems finding a doctor who WOULD consider it. HOWEVER - the signs are that there is possibly something autoimmune going on - dismissing it as "all in your head" is potentially negligent. But we meet it all the time.
EileenH
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adette01750 tanya25926
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I meant keep plugging away for a diagnosis and not to accept a 'it's in your head' diagnosis. I do appreciate that you are young and that's my concern.
I don't want you to be so miserable with pain and no one listening to you.
tanya25926 adette01750
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thanks again for replying 😀 the only thing that came up in my other blood tests i got done was my uric acid is very high .. im at a loss atm as too what the bloody hell is going on when it affects my quailty of life at my age ... whatever it is its painful i was walking yesterday and my legs felt like they couldnt move and my hips feel like they are broken. im actually quite scared as too what it is hopefully i find a doctor who listens sooner than later...
thanks for your concern 😀
EileenH tanya25926
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Rach847 tanya25926
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Hi, Im completely new to this as my Dr has suggested I might have PMR. I was, however, diagnosed with Fibromyalgia last year and have been on a cocktail of drugs since. Some help, some do not. But that diagnosis came after 17 years of being ignored by my doctors. I'm 34 in April. I would fight for answers. I took in a long list of my problems and was eventually sent to see a rhuematologist on the back of that. I'm a bit confused with this possible PMR diagnosis but Ill just wait and see what the bloid tests come back with. If anything. Keep going back, keep mithering, take a list. Ask to be referred. Good luck.
Anhaga Rach847
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You say you've been having problems since you were about 17? Have you been properly investigated for allergies, or sensitivities to environmental factors like chemicals which are ubiquitous in our world now?
Rach847 Anhaga
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EileenH Rach847
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However, if you have had the same symptoms snce you were a teenager then it is extremely unlikely to be PMR (albeit possible, the youngest recorded case in the medical literature was in their early 20s). But maybe they could identify things better now - things have moved on a lot in the lst few years.
Environmental factors are probably a part of autoimmune disorders - just one piece of a complex jigsaw puzzle though and their need the right shaped space to do their damage in concert with a load of other factors including our genes - which are individual to each of us.
Rach847 EileenH
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Thank you EileenH, it was bad enough having the fibro diagnosis I dont need PMR too! I think he's just covering all bases now as my previous doctor (lovely woman but useless) didn't really understand or know what to do. I do have a lot of pain around my shoulders and neck now and thats what has triggered my new tests.
EileenH Rach847
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Rach847 EileenH
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EileenH Rach847
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I think you need a better rheumy - IMHO fibro is the lazy doctor's go-to diagnosis. But PMR at 34 is a very atypical and does need to be investigated by an expert. But the first thing to do is try a moderate dose of pred (20mg) and see if it makes a difference. If it doesn't help at all, it almost certainly isn't PMR.
Anhaga Rach847
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Environmental illness can manifest in a lot of ways, and I'm no expert. When one of my children was quite small she tested allergic to several things and at that time I did a lot of reading, so although I can't give you any specifics I do know it's a modern problem which is still (my daughter is now nearly 40) not given enough attention. Yes, muscle pain is one thing you can get. The most common thing is of course hay fever type symptoms. There are also gut problems for many people. Another common trigger nowadays is artificial fragrance. But people can react to all sorts of things. One of my friends was terribly itchy and it took her computer savvy husband to help her figure out she was allergic to cinnamon! It all depends on what an individual is vulnerable to and it can be quite difficult to sleuth out the culprit, if it is indeed an environmental factor. If you google environmental illness you'll get some good basic information about what it is and the many symptoms one can get. It may be one cause among several to help explain your symptoms. It really was your young age and the fact that doctors didn't really find anything to explain the problems, which made me think of it. It's possible that as you have grown older other things have joined the party, Many of us develop aches at a relatively young age (I've had osteoarthritis for many years, diagnosed at age 40 but I know I had it before that).
Rach847 Anhaga
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EileenH Rach847
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There is little difference in presentation between fibro and PMR - they really can be very very similar. x-rays don't pick up inflammation and 1 in 5 people with PMR don't get raised blood tests. The only difference - as I said - is that PMR responds to a moderate dose of pred. That will answer one question - if it does respond it isn't fibro. But it might not be PMR either and a GP is never going to work it out if it is a complex autoimmune disorder.
Anhaga Rach847
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I wasn't saying you have hay fever, just that there are many different kinds of symptoms which can be caused by environmental factors, sinus being one. Sorry if you misunderstood.