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
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.
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!
If it is PMR or GCA, the inflammation blood tests you will have done come out as OK on twenty per cent of people for some reason, so although they may be ill you cannot tell from the blood tests, which it seems several doctors do not realise. You may not be one of the twenty per cent of course.
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.
Must say it does sound like classic PMR/GCA, both of which I have. If it is, it will respond to prednisone within hours, and that’s the best way to tell if it is because nothing else works with PMRor GCA. When I was first diagnosed I had eleventy seven symptoms of both but before the blood test came back my dr started me on 50mg pred . Within 5 hours the pain was reduced 70%. He told me to take it for 24 hours, stop, then see what happened. It came back with a vengeance. The blood tests by then were back with an inflammation rate of 53.so straight back on 50mg and off to a rheumatologist. Don’t muck around though, if GCA is involved you can’t wait around guessing. Good luck, fingers crossed for you.
thank you so much for replying i believe i have it also or something very similar too it... my blood tests come back tomorrow hopefully ill have some answers then . ive seen about 15 doctors and finally one listened too me i know my own body something is not right. ive been told many things like i have CFS depression even cancer from doctors i just want a firm diagnosis before i go crazy ... have never experienced anything like this in my life trying too keep positive and once i get treatment ill be fine ... thanks again for replying lol its not all in my mind as ive been told
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 ...
Hi Tanya,
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
hi there,
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 .
hi there,
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
Up to 20% of patients with PMR/GCA have normal blood markers - I had 5 years of doctors acting like yours. I am convinced the rates of PMR without raised markers are far higher than they think just because of this attitude - no abnormal bloods, must be a mental problem...
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.
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
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.
Rats - there was NOT meant to be a smiley face there...
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.
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 😀
If you have a very high uric acid level then they should be looking for the cause - you have symptoms of something to go with it.
Hi Tanya,
Have you investigated why your Uric acid is high?
Just wondering how you are? Xx
hi adette,
i went back too the doctor again today he said high uric acid can cause gout, which i dont have. all my other blood tests dont indicate anything of concern too him ive had almost every blood test you can have ct scans you name it. its very frustrating im having few more tests done tomorrow pancreas levels and a test i asked for CA125. its a test for cancer cells i googled alot driving me nuts lol .. my blood pressure is perfect chest clear heart rate bit high he said stress does this.
im praying that blood work shows something or perhaps it is stress thr mind is very powerful and its all connected im really not sure what too think or do ..
hope u are well
thanks for your reply x