More medical stuff...

[shirlthegirl43]

I went to see the doctor yesterday. The CFS/ME has been okay and I think I have it under control. However, for months now, my right thumb has been giving me gyp - now I can't use it properly at all - worst of all, I can't pick up a glass unless it is a stemmed one left wrist also gives out and I really don't trust my hands for picking up anything hot any more.

Told this to the doctor (well, not the glass bit) and said I couldn't do up buttons, work the tin-opener and taps etc, and he said he will refer me to see a rheumatologist. Not quite sure what that means but having had a quick wikipedia look, maybe I will find out I don't have CFS/ME after all!

[Flummery]

Whooo - then maybe there is some treatment for it Shirley. Let's hope so.

[shirlthegirl43]

Not sure what other than CFS would explain the tiredness though.

[pipscariad]

Isn't it a b****r when bodies decide to start conking out Still, hopefully the Rheumathingy person (spelling fails me there, sorry!) can sort things out for you. Will keep my fingers crossed for you. Hope your lurgy is clearing up btw, sounds like you've had an unpleasant time with that alone, never mind the hand prob too. ((((Hugs))))

[SarzWix]

It has frequently occurred to me to wonder if you have HMS Shirley, it affects all people differently but, CFS/tiredness/random pain/bits-conking-out/arthritis are regular features! It doesn't necessarily mean you are ridiculously supple now, although some are, nor that you frequently dislocate, although some do. It can also be if you were extremely supple as a youngster (often doing well at gymnastics/dancing/ballet etc).
A rheumatologist will be able to work out if that's it, usually by eliminating other things along the way. The link in my signature has some good info. The diagnostic criteria also applies historically (you could do it, but now can't).

[shirlthegirl43]

I was never particularly supple but was good at ballet though not gymnastics. Never been double jointed either.

As to the used to be able to do it but now can't - does going for a run / carrying bales of hay across fields / standing up long enough to do a load of laundry and ironing / staying awake past 9pm, count?

[SarzWix]

The double jointed bit is a bit of a myth really, some people are and have no pain or anything, some people only have one affected joint and never notice that they bend too far til something goes pear shaped in later life. My knees both bend back too far, but to the naked eye it's imperceptable (sp?) and I didn't know til I was 34! They don't give me much gyp, but they did cause my dodgy back
Anyway, I'm sure the rheumy will look at that as a possibility.
It's good news that things are going to be looked at anyway, and should reult in an improvement of some sort

[selfheal]

Hi Shirley,

I just thought i'd let you know that ive been ill for the last two years and without looking into it at all the Drs told me i had CFS/ME, i kept pushing because things just didnt seem to fit. I ended up seeing an infectious diseases Dr 2 weeks ago who looked at my file, examined me and ask some questions and then told me he thinks i have Adult Onset Still's Disease.

Its very rare, but basically fits in with rhuematoid conditions. It explains everything that has happened to me in the last 2 1/2 years including my annoying rash, pericarditis and my extreme fatigue and joint pain. Im going back on tuesday to decide wether or not to treat me for Still's. Im presuming i will be reffered on to a rhuematologist too.

Keep your chin up, they will get to the bottom of it in the end, just make sure they look into it properly and dont just dismiss it as CFS/ME. Rhuematoid conditions are nasty and cant be 'cured' BUT they are treatable and some people onlyhave one big flare up and never get ill again.

I have come to a point where i am happy for it to be Still's disease or another Rhuematoid condition becuase i can get on with dealing with it and having decent treatment and hopefully getting some if not all of my old life back- compared to CFS/ME that you have trouble getting people to beleive in, have no support from the NHS and are left to stew. In 2 years i havent even seen a physiotherapist or a occupational therapist!

Anyway, i hope you see the rheumatologist soon and try not too be too worried in the mean time, ive spent the last 2 weeks stressing but its done me no good!!! *hugs*

i would like to know what happens with you... all this rhuematology stuff is new to me too and its quite scary.

[shirlthegirl43]

Thanks folks, the various information is interesting. I will keep you all updated as to when I get to see the rheumatologist and how it goes, don't hold your breath though.

[PAULW]

health corner: fibromyalgia
This may be of interest to you

[shirlthegirl43]

Thanks for that but none of those pop up as tender points - phew - one to cross off the list?!

[dexterdoglancashire]

Sorry to hear your news Shirl. I'm sorry I don't know anything about the conditions you are talking about. Just keeping my fingers crossed and my thoughts are with you chuck. Take care.
Love Bernie

[selfheal]

scratch my last post. dr sent a letter today telling me he has changed his mind, i dont have Stills disease and medication wont help me get better. instead i can go back to being ignored. great.

hope you get a better outcome than me.

[shirlthegirl43]

scratch my last post. dr sent a letter today telling me he has changed his mind, i dont have Stills disease and medication wont help me get better. instead i can go back to being ignored. great.

hope you get a better outcome than me.

What a bummer!

I don't get much from my doc but he does keep testing me for depression and I keep having barrages of blood tests. He eliminated all he could before saying it must be ME/CFS. However, that just means I get lots of painkillers whenever I need them. Hey ho.

[Hilary B]

My son has some mysterious rheumatic ailment. He can't move without painkillers. It hit him when he was 25 (nearly 4 years ago), and is getting progressively worse. The docs seem unable to find out exactly what it is, but think it was caused by 'a virus'. Deterioration seems to have slowed rover the last year or so, but maybe he is just taking so many tablets that it doesn't show.......