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RE: It's back... <>

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Hi ,

Yes, it is a strange illness. It would actually help if I had some

outward indication of the disease. The swollen joints, rash, anything.

But from even my doctors standpoint, I look perfectly normal. Even my

X-Rays, MRI's, and CT scans all show everything is normal. No signs of

joint damage even. Only that that is way off is my blood tests.

One thing I do have that seems that it might be part of the disease, I am

not sure, is that when it flares, I get white sores in my mouth and a bad

sore throat.

Wish I could just get the symptoms under control. Only that that has

helped thus far has been Vitamin D (Seems I was abnormally low.) and of

course pain killers and something to help me sleep. At the moment, valium.

Cheers,

Darv

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Steele

Sent: Saturday, April 12, 2008 1:20 AM

To: Stillsdisease

Subject: Re: It's back...

Dear Darv.

Your emotions sound so like my hsbands who is the stills suferer. One thing

I have learned about the disease is that as you say everybody shows it

differently. Phil has daily flares lasting 7-8 hours and like you is in

constant pain, some would say that because every time he has a flare he

doesnt always have a rash to a very swollen face. (I can tell before him

that he is about to have a flare because of the swollen face), that he

doesnt have normal stills. But try and explain to someone that there really

is no such thing as nornal stills and they look at you as though you are

mad, or worse still that you are making the whole thing up.

All I can say Darv is from what I have read and heard from numerous Doctors

it does sound as though you do unforunately have it, Just hang in there and

keep in touch with the site cos they are GRR..EAT on here. We read the

emails daily although we dont always contirbute. the knowledge that everyone

is here if we need them is reassuring.

Take Care & Phil (UK)

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