17 With Esosinophilic Fasciitis

I'm 17 years old and I've had EF for a year now and its been very difficult. It took almost 5 months for anyone to even diagnose me. When i first swelled up it was in my whole body, even my face. But now its only really in my legs, arms, and back. I've been on prednisone the whole time, everytime they have tried to get me off...i swell up again. I'm also on Methotrexate, 8 a week. I am a very spirited person, always on the move. Even though i've had this for a year i have still been wrestling on my high school team, the whole time which amazes my doctors. I have almost no movement in my wrist or ankle and its very very hard. The worst part, for me, is the way my skin looks and feels. On my legs my skin is so hard and shinny and the color of my skin has become very ugly with spots. My self confidence has hit an all time low because i don't like people to touch me. I'm only getting worse and none of the medication seems to be making a difference. When did you start getting better, anyone who did?? I'm so confused and frustrated because most of the doctors here have never seen this before. Luckily i'm not showing any side effects to the drugs I'm taking right now. I'm seeing a lot of doctors and one wants to continue with what i'm doing and be patient to see if i get better, while the other wants to attack this more fiercely and add more immunosurpressents I'm going to be starting my senior year and i just want to get better. I'm trying very hard to maintain my smile and remain the optimistic person i've always been but its becoming harder and harder. i try to tell myself every morning that the only disability in life is a bad attitude. I'd really like to hear about any treatments others are taking, or anything that's helping. Really it feels better to know i'm not alone with this......

Jay148 Jay148
Jul 27, 2010