polymyalgia and bursitis

Your description sounds just like I was before diagnosis, especially the hip pain at night and I think your GP is a bit more on the ball than the rheumatologist! In fact - I'm tempted to ask where you live and are you seeing the same rheumatologist as I saw who also wanted to make a clear clinical picture into something nastier! Luckily I had an intelligent GP!

Obviously all your other accompanying ailments do cloud the picture but if you have one autoimmune disease you are more likely to have another.

If you google pmr gca uk northeast support site you will get a link to the website of this UK charity for PMR and GCA (if Iput it here this post will disappear for ages to be moderated). On that site you will find guidelines from the British Association of Rheumatologists with the list of symptoms of PMR - if you have 3 or more you should be considered a candidate! I can tell you - you do. The fatigue is also a PMR thing.

Above all - have you had relief of any of your symptoms yet? That is one way of tickling PMR out from other arthritic things - nothing else responds within hours. It is possible that since you are on a baseline maintenance dose for the adrenal problems you would need a highish dose but the GP has allowed for that in that the recommended starting dose in PMR is 15mg, going up to 20mg for resistant cases and the GP has given you 30mg.

I would also suggest that you look at the other thread about methotrexate and the replies I have posted there, especially the one about leflunomide - given your other problems the GP may be quite concerned about upping your steroid dose and you would seem to be a candidate for an attempt with steroid-sparing drug (although I'm not absolutely au fait with the contraindications for it so I might be wrong). The poster presentation I mentioned there was by one of the doctors doing research in PMR who is also associated with the charity.

Anyway - do keep in touch and let us know how you get on. We will do our best to answer any questions we can and promise to listen to any moans you feel you need and send virtual hugs. I couldn't work like you do and I only have PMR! But I know about the use of the mouse with untreated PMR :bruised: :cry: . I use all the keystrokes I can! By the way - PMR comes under disability so you might qualify for a badge if walking is too bad plus your employer should also help - there's a thread about that too.

all the best,

EileenH

thanks for your reply, I don't want to work but have to as my partner was made redundant 18 months ago, so there's only me bringing any money in, it is my own business a travel agents, and as from next week i will close the shop and work from home, as I am really struggling, I have had to come home today as I felt so tired and still in pain, but at least no stiffness. I live in saddleworth but go to ********* about 16 miles away for my medical stuff I am under prof ****** endo and Dr ***** for Rheumy, he is excellent but I seem to see other people each time I go, but my Gp is great as I just see him and he knows me inside out I think.

I wondered if you still got tired and pain when you were diagnosed, I am sleeping very well though which is better, the other thing I had before was if I had been sitting down at work for say an hour, if I got out of the chair I had to strech my legs quite a bit before I could walk, I looked like something out of monty python.

I have tried Methotrexate before Injecting myself, but I had problems, I was going to try enebrel but it was a differnt guy last time and he just said my fybromyalgia was playing up, I have tried their drugs for Fybro pregablin and Duloxotine but they don't help.

have you any tips for me to make things easier, I do try and carry on as normal as possible but I am struggling this time.

lesley

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The stiffness bit after sitting is one of the really typical things in PMR and even now I find occasionally I get out of the chair after a long spell on the computer and it takes me half way into the living room to feel as if I'm walking like a human! And on a bad day the stairs are interesting - though not a patch on pre-steroids when I crawled up them on hands and knees and went down like a toddler, one step at a time.

I had a bad experience with the rheumy, seeing the consultant the first time who was undecided but gave me steroids which were a miracle but when I went back 6 weeks later got the minion who repeated all that been done the previous time, ignoring my detailed report of the response of the symptoms and then admitted he had no idea and fetched the \"boss\". He too was utterly uninterested in the fact my symptoms had improved noticeably in 6 hours - typical of PMR. I have no objection to seeing someone else for follow-up but I'd like a diagnosis first if you don't mind. The GP was fine, like yours.

However - is it fibromyalgia?? I found my symptoms ticked boxes for fibro, ME and PMR - with a load left over!! I couldn't bear being touched on certain points that didn't really fit with PMR but I didn't have the 18 (or however many it is) for fibro.

If your stiffness has improved that is a good start. The pain will improve slowly as the bursitis in the joints diminishes - that does take a few weeks I found and I suddenly realised that all sorts of things had improved. The fatigue is another thing. You have to learn to pace yourself and find out what it is that really goes for you. Some of us can't walk far. Others have other things that tire them. Even visitors might be a trigger for it. Once you have been sleeping better for a while it will probably get better as you catch up on the lost hours but after 18 months I still find a bad night's sleep makes me feel disgusting the next day.

We had a thread months ago about ways of making it less bad, mainly because some people wanted to try with no drugs. Being warm before you get out of bed seems to help - put an electric blanket on before you get up. Maybe a warming pad would help when you are sitting later in the day. Occupational health should be able to provide you with things or tell you where to get them - some of their ideas need money (use pre-prepared veggies they said - yeah, right, who's paying?) but they can provide some help and ideas. I'm sure someone will come along and remind me what the thread was called or give their ideas. They might know about alternatives to the mouse!!

Don't force yourself to do things - you have a partner who must have time if he's been made redundant, don't try to hide how bad you feel. Let him carry things, do anything that hurts you - opening jars, loading/unloading the dishwasher - I couldn't put anything on a shelf above the bottom one. I found going to bed at 9 and not getting up until I felt ready helped a lot - and still does. I'm self-employed so can rearrange my day quite easily. Forcing myself out of bed earlier makes for a less good day. If you are tired - admit it. It isn't giving in - it is being realistic and with time it won't be as bad. But you must allow your body to recover and that won't happen overnight. And especially as you say you were on the verge of an adrenal crisis - one lady on the US arthritis insight forum tried to reduce her steroids too fast and ended up in hospital a few months ago and is only just beginning to get back to where she was. The bottom line is you have to find a new \"normal\", one that is less strenuous for now. It will improve.

Can't think of anything else - and I must do some work (it's 9.30 pm here but there's more to do!),

all the best,

EileenH

Thanks again for more help, you seem to be just the same as me, I go up stairs on my hands and feet and walk down like a child, also can't bear to be touched, at work people shake my hand and it hurts so much!!!

I have started to feel a bit better now and can walk better, still a lot of pain in my arms though, I go back to my GP on the 8th Nov so I am hoping I will have improved a lot by then.

For the first time since I got all these autoimmune things I cried last night, but I think it's just because I am so down with it, I have a client with polymyalgia, she just woke up one day and couldn't move thats why I didn't think I had it, she is down to 3mgs a day now and doing quite well, but she has had it for sometime.

lesley