Guest guest Posted April 13, 2008 Report Share Posted April 13, 2008 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) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Thanks for writing back. I've had pinkish patches on my chest but they pass so quickly and it's hard to know if I have just been sleeping or putting pressure on the area. It usually goes away pretty quickly. Certainly within 15 minutes or so. Darv From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of a_cone Sent: Monday, April 14, 2008 12:02 PM To: Stillsdisease Subject: Re: It's back... <Gail> Hi Darv, I haven't had the rash always either. only the last year and we are calling it a rash even though it is faint, just a light pink on my cheeks and chest when I have a fever, soemthing nobody else would even notice. So there's a chance you have a " rash " and don't even know it or you jut don't get one. Either way, not a requirement. Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Thanks for writing back. I've had pinkish patches on my chest but they pass so quickly and it's hard to know if I have just been sleeping or putting pressure on the area. It usually goes away pretty quickly. Certainly within 15 minutes or so. Darv From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of a_cone Sent: Monday, April 14, 2008 12:02 PM To: Stillsdisease Subject: Re: It's back... <Gail> Hi Darv, I haven't had the rash always either. only the last year and we are calling it a rash even though it is faint, just a light pink on my cheeks and chest when I have a fever, soemthing nobody else would even notice. So there's a chance you have a " rash " and don't even know it or you jut don't get one. Either way, not a requirement. Houston Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2008 Report Share Posted April 16, 2008 Thanks for writing back. I've had pinkish patches on my chest but they pass so quickly and it's hard to know if I have just been sleeping or putting pressure on the area. It usually goes away pretty quickly. Certainly within 15 minutes or so. Darv From: Stillsdisease [mailto:Stillsdisease ] On Behalf Of a_cone Sent: Monday, April 14, 2008 12:02 PM To: Stillsdisease Subject: Re: It's back... <Gail> Hi Darv, I haven't had the rash always either. only the last year and we are calling it a rash even though it is faint, just a light pink on my cheeks and chest when I have a fever, soemthing nobody else would even notice. So there's a chance you have a " rash " and don't even know it or you jut don't get one. Either way, not a requirement. Houston Quote Link to comment Share on other sites More sharing options...
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