Vasculitis UK

MIS-DIAGNOSIS FOR CFS

I HAVE RECENTLY BEEN DISCHARGED FROM HOSPITAL, BEEN TOLD THAT I HAVE VASCULITIS, FOR THE LAST 2 YEARS I HAVE RUN TO GP'S, CONSULTANTS AND WAS TOLD THAT I HAVE CFS/ME. I BECAME VERY ILL OVER ON HOLIDAYS AND MY LEG STARTED TO SWELL AND A RED PURPLE RASH APPEARED ON MY LEGS AND PAIN. I WAS ATTENDING DERMT. CLINIC AND KEPT TELLING ME IT WAS NOTHING TO WORRY ABOUT, UNTIL I WAS TOOK TO A&E. I AM NOW EXPERIENCING SEVERE PAIN IN MY UPPER BODY, CHEST AND BACK AREA, IS THIS NORMAL, AND STILL EXPERIENCING TEMPERATURES, WHAT CAN I DO, ALSO WHEN RASH DISAPPEARED SMALL RED MARKS STARTED TO APPEAR ON MY LEGS AND LOWER ARMS.

7 Replies

oldest • newest

AndrewT

5 years ago

Dear joey954,

The symptoms that you describe sound like vasculitis, to me,-I too had a rash, for years, and it wasn't until I collapsed that any connection was made! I agree, with everyone above, that yes you need to go on steroids- probably quite a high dose, to begin with (20mg+), this will be reduced, as you 'improve'. They will, after a time, find you a 'maintenance dose'- the lowest amount that you can have and still keep you 'well'.

Which hospital(s) are you under? Do they have experience of vasculitis, not all do apparently! If you are anywhere near the South East, try to get referred to Addenbrooke's (Cambridge). I have just had a kidney transplant there- six, or seven, weeks ago- it seems to be doing fine!

I hope that you 'get on' OK and I give you my best wishes.

AndrewT