Polymyalgia rhuematica

wannabewriter

So

Saw the doc this morning....bloods all normal. He thought maybe it was Polymyalgia rhuematica (whatever THAT is) or sero negative RA, so off to the consultant I go....

He said he really thought it was PMR but wouldn't tell me anything else until I've been to the specialist.

DOes anyoen on here have PMR and what is it like and how does it affect you? Sorry for all the questions!

Thanks!

tillytop

Hello!

I have RA, not PMR but I am sure I am right that there are PMR peeps out there who can give you information. I think you may also find some good information on the publications and resources section of this website. The Arthritis Research Campaign also has some good info.

I am glad that the GP has referred you to the consultant cos all these inflammatory conditions can be tricky to diagnose and to understand. Hope you don't have to wait too long for your appt.

Thinking of you.

Love Tilly xxx

dreamdaisy

Hi wannabewriter, I am sorry I cannot help either as I have PA (or so I am led to believe). There are many types of arthritic conditions and it can take a while to narrow the field and reach some sort of conclusion - if not an actual diagnosis. I hope that they can begin to get some sort of handle on things for you and, if necessary, start you on the appropriate meds, if indeed there are any! I wish you well. DD

frogmorton

Hi Wannabe

I think progress is being made for you? I STILL don't know what l got!!! they chuck words at me every time l go to te rheumatologist - he mostly calls it RA but my bloods are neg so l guess sero-neg myself...

The rheumatologist will do a ton more tests and see if things can be established, but l reckon the sero-neg diagnosis is more a priocess of elimination.

Any idea of timescale for yourspecialist appt?

Try not to worry and there ARE people on here with PMR who may be abel to fill you in

Love

Toni xx

ratface

Hi, I've had polymyalgia rheumatica in the top muscles of both arms. I was diagnosed with it back in 2008.

My GP put me on prednisolone which gave me pain relief within 4 hours of the first dose, I had, fortunately, had bloods taken the week before (if my memory serves me right, they showed that my white blood count was up, either that or inflammation markers were up) from which he made the diagnosis. Also took paracetamol at night in the early days so I could get some sleep.

My symptoms came on suddenly in the left arm (almost as if I had strained the muscle). Then the right arm started. Both muscles were painful and stiff, lifting/dressing/combing my hair was very painful.

Three years down the line and I am now off the steroids and still occasionally get the odd achy pain through both arm muscles but nothing like the pain and stiffness as it was when I first got it.

Getting over PMR (and coming off of steroids) was a long process - steroids did help me. (I was working full time and needed to drive so I probably did stretch out tapering them off). Other people probably don't/didn't take quite as long as I did - I am a bit of a whimp!

I also have RA and believe that it is not an uncommon occurance for people with RA to get it.

Hope this helps you a bit.

Rat Face

traluvie

Hi...

I am someone who has not got an accurate diagnosis lol
I have inflammatory arthritis which was diagnosed through bone scan as bloods were near enough normal, what sort of arthritis my rheumy doesn't know..
As i am recently aware there are many people out there who can be diagnosed with arthritis but what sort can be hard to diagnose.. Quite complicated lol, but being on here really helps.. taught me an awful lot..
Hopefully you can start appropiate treatment soon and it helps..
Let us know how you get on..

woodbon

Hi, I've been told I probably have multiple joint OA it effects my hands, wrists, neck and a few other places. Its been hard getting a diagnosis as the bloods didn't show RA, although the syptoms suggested it, one doc said sero neg ra at one time and then I saw another and he said he didn't believe in sero neg!!! I think it is hard to be sure when the bloods don't give an answer, they have to rely on scans and x-rays oh and symptoms from the patient! I hope you soon get a diagnosis and then the meds can be sorted out for you. Good luck. Sue

elnafinn

If you go to the Search button at the top of the screen and type in PMR and click on the Living with Arthritis Forum, and then click on Search underneath the list of zones to choose from, eight pages come up with postings from peeps who have chatted about PMR. May be of help to you perhaps?

Elna x

wannabewriter

Thank you all so much for your replies, they are so supportive and helpful! I guess I’ll just have to wait for the good ol’ NHS to get me an appointment with the specialists and not have to worry about it until then (which means ignoring constant pain but I guess you guys are veterans at that!). I rely on that ibuprofen gel stuff which does really help, but am not sure how much is safe to use seeing as so much (shoulders, arms, knees, wrists, hands, hips) hurt. Any ideas on that? It’s a bit difficult to guess dosage in a gel...

Thanks all so much again your a lovely bunch!

dreamdaisy

I think the packet gives you some idea about the quantity you should apply and how often but given that multiple joints are affected you may find good old pain dulling tablets a cheaper alternative - your GP can prescribe them for you and you'll get them for nowt. Gel is expensive - does he prescribe that for you? Mine never would! DD

wannabewriter

Ah no, I just buy the gel myself, there's no way I could get it on prescription at my docs! Pain dullers are a bit difficult, I can't take anything coediene based and brufen makes me really sick (as in projectile)....I've always been given that either/or of coedine based or brufen based, but are there any alternatives that you know of? So far I've rotated which bit the gel goes on depending on what hurts the most and when it last had some gel on it!!

I might take a look at learning some distraction techniques or something, see if that helps.

dreamdaisy

Right, if the codeine-based ones don't suit then I guess the morphine based ones won't either. What about butrans patches? That is a synthetic pain duller, it might be worth asking your GP about that. Gels are expensive and not that long-lasting, mind you nothing is long-lasting in terms of pain relief, the blasted stuff always comes back!

As for strategies distractions works well, visualisation and relaxation too. Pain can appear to be worse at night simply because daytime distractions aren't around. I disappear into my MP3 player, listening to music or books. That helps. During the day I ignore it, I am so used to it now. DD

wannabewriter

Hi all,

So, after allll that, it's not RA(whoop) and not PMR (double whoop) but apparently fibromyalgia (darnit). Oh and OA in knees, which I figured anyway.

MRI on the knees soon, to see what - if anything - can/needs to be done, on amitriptiline for the fibro, let's see shall we? So far, so good, though I have been getting a bit dizzy/headachey in the daytime when taking the ami the night before, not sure if it's related so will stick with for a few more days...

Hope you are all as well as can be and thanks for the support x

hileena111

Hi
You're last message about amitriptiline.......I cant take it but I'm sure I read somewhere on this forum that someone said they didnt take it any later than 8pm because of side effects the next day.....could be wrong just for a change
What time do you take them at?


Love
Hileena