On 5/29 I was dx with raynauds, my rheumy didn’t know anything about Em and when I showed him pictures (I posted a few in the photo section) he brushed it off and said he didn’t know and he was going to refer me to a vascular surgeon. I have crappy insurance and my doctor already thinks I’m on a good one because I’ve been “sick” but not “sick enough” apparently. She told me right off the bat all this stuff going on was in my head, I was doing it for attn etc. now that some of these other new weird symptoms have come up (hands and feet burning when I get hot or around heat etc) and I’ve even shown her pictures of the more extreme times it’s happened to me. The rheumy put me on gabapentin which has helped. Rheumy only mentioned the raynauds and that I’m “photosensitive”. There are some nights that the pain is unbearable and I can’t even walk. I don’t know much about photo sensitivity, but I imagine that happens in light/sun?? Not in the middle of the night in bed in the dark?? I am so frustrated I don’t want to be like this forever and keep getting passed on to each doctor to keep getting “I don’t know”. All of my ANAs were negative and all of my labs are “great” my gp said. If anyone has any advice, who to see what to ask etc, I would appreciate it. I live in so cal.
I am so sorry Laurent85. The hardest part of this whole thing some times seems to be getting someone to believe you!
Did you just bring in photos or did you also bring info on EM to your doctor too? If you brought info in too and they are still discounting your symptoms it may be time to move on to another doctor. I myself must have seen at least 10 minimum different doctors until I found one that believed me and would help. Don't let them get to you. You are not crazy. Crazy can't make your feet turn red , warm . swell and burn even if you wanted to!!!
It is quite common for EM to flare up even worse at night. I was told at first that I must be allergic to heat or to change my soaps and lotions. Hang in there. Don't give up and try not to let them get you upset because that often makes it worse too. I know easier said than done :)
Thank you so much Alina and dkel! I’ll print out the brochure and bring that with the pictures. Yesterday I brought all of my labs and pix and everything to my aunt, she worked in a rheum office for several years. And even she said there’s definitely somethig going on. I mentioned the EM, and she looked a few things up and the hot water test came about. So sure enough I had my hands in a sink with warm water for. 5 minutes and it set off a pretty good flare. So even at that point she said she thinks that’s what it is and to find a dr who specializes in that kind of hing ASAP. Now I’m just not sure which kind of specialist to see?