I have been diagnosed last year with M.e/C.f.s and adrenal fatigue and at the end of last year the dr said a severe virus in Oct 2010 triggered it. also diagnosed with
Fibromyalgia, however the pains have got a lot worse and I am struggling to keep working I have
severe pain across my shoulders neck and upper arms, chest, middle back,legs upper and lower, I have
bone pain in my back by my pelvis, pubic bone, hip,knees and my right ankle, I am 40 years old and currently struggling to continue to work full time .
My question is could this possibly be polymyalgia?? I am on strong pain killers but they are not effective , I take amitriptilyn at night as a muscle relaxant to stop me waking up during the night stiff and in pain and it worked for a
While but does not now??
My plan is to get another dr appt and ask to be referred to a rheumy but I'm concerned he will just put it down to the fibro?? and I am now thinking it may be polymyalgia, but at 40 am I too young? Is there anything else it could be??
Any advice would be great!!
Many thanks Angel xx
Angel
Although we don't hear of many people diagnosed with PMR at the age of 40, it is not unheard of.
It's true that in the case of Polymyalgia, painkillers have little or no effect.
The classic areas for pain in PMR are in the muscles of the shoulder and hip girdles, lower spine, front of thighs and groin.
Have you tried increasing the Amitriptilyn dose to see if that helps with the Fibromylagia pain?
Another couple of things to investigate is whether 1) you are deficient in Vitamin D which can also cause pain similar to that of PM; 2) whether your have a hormone imbalance; 3) whether you have some other problem such as rheumatoid arthritis. Simple blood tests can be carried out to check these.
You won't know what your appointment with a rheumy might "put it down to" until you try it! Good luck!
MrsO
Hi Angel so sorry to hear you have all these problems that is a lot for you to put up with!As I have just been. Diagnosed myself in last few weeks,I couldn't honestly say ! But I sort help from my local eye infirmary because of eye problems after a year of a lot of other problems I was them sent to see a Rheumatologist who diagnosed my illness so if I were you I would ask my doctor to send me to see a Rheumatologist I then sort help through the north east PMR-GCA forum who have been very helpful to me with questions and answered I needed to know ! They have forums all over so I suggest you google thePMR- GCA forums and take it from there I suggest. You go to your doctor as soon as !then take it from there in the meantime you could look these forums up and be reading their questions and answers ! Good luck ,and let me know how you get on Blubberbabe2
Hi MrsO,
Thank you for your reply, I have tried upping the amitriptilyn but it hasn't worked :-(
I have been vit D deficient , I think it was 42 so I now supplement.
I was tested for RF but it was negative, so my dr said he would not refer me but I read some where that you can still have it but be sero negative??
Your right I won't know what they will put it down to until I try! I just thought others might have had more
experience than I and maybe could help, so I will book an appt!
Thanks again for taking the time to reply and hopefully my dr will refer me and I will get some answers!
Many Thanks
Angel x
Hi Blubberbabe,
Thanks for your reply, I will def google for the forums they sound great! And I am going to book an appt prob on Fri to ask to be referred as I am at the end of my tether now with this pain and stiffness Arghhh!! There seems to be no let up at the moment, sometimes just being hurts!
Thanks again for replying and for advice and I will post back after drs appt to let you know how I get on!!
Fingers crossed! And thanks again
Gentle Hugs Angel xx
Hi Angel and welcome!
Here is a link to another post on this forum that provides links to the others:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
I can't put them directly as the post would disappear - this is allowed!
If you are 40 and have all these symptoms you need to insist your GP gets on to things and investigates what he can investigate properly - and also refer you to to a rheumy for the things he can't do. Being Rh factor negative doesn't mean you don't 100% have RA - it comes in seropositive and seronegative versions. Also there are several other things with similar symptoms and it is one bit in the jigsaw of identifying which is which.
Above all, since PMR as an illness itself is extremely unusual (not impossible, that's different) in younger patients and the symptoms you are describing are similar youdo need to see a specialist who can do the exclusion work - amongst the causes of these sort of symptoms are other autoimmune disorders (some are very similar to PMR but appear in much younger people) and a few cancers.
In the meantime - if you could afford it you could try physiotherapy or Bowen therapy to see if it gives you some pain relief. It helped me a lot in the years when I was "too young"! Some physios use Bowen techniques. There are overlaps between polymyalgic syndrome and fibro - but amitriptyline does help fibro pain, it doesn't help polymyalgia. There is another fibro drug called pregabalin (Lyrica) which is used more specifically for fibro.
Eileen
Hello
i was (finally and reluctantly by GP and Rhuemy) with polymyalgia at age 42, i am 49 and it is still with me! I was given Amitriptlyn - did absolutely nothing but help me sleep a bit better.
it seems the only reliable test is to take pred and see if you get the immediate relief it brings to Polymyalgia
Def back to the GP!
Hi Cornishmaid!
"Def back to the GP" - if you have had "something" for 7 years and it hasn't gone away you need to go back to the GP. If you were told it is "PMR" - the least they could have done is use the first line treatment.
The standard treatment for PMR is 15mg/day pred. The group in Bristol takes a rapid response to that dose as pretty much conclusive evidence it is PMR as opposed to other things.
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
If you haven't already seen this, this link takes you to another post on this form with links to various useful sites - and a paper by the Bristol rheumies who have written it aimed at the GPs who struggle with PMR. You can access it and print it off. It is fairly easy to read most of it - and your GP should have no trouble (I hope!). Bristol gives a "sandwich" of a week of vit C, a week of pred and a week of vit C. If it is PMR the symptoms will improve dramatically and reappear after the pred is stopped. If that doesn't happen - you need to look for something else. It is quick and easy - anyone can try it. If that doesn't work - back to a rheumy I suppose.
But I don't understand: why SAY it is PMR and then treat it as if it is a neurological pain/fibro? Sometimes I think I'm going nuts ;-)
Eileen