Anyone else suffering from Dermatomyositis?? - Myositis Message Board

Nikkamo · 08-17-2005, 04:13 PM

I would like make some connections with others who are suffering with DM/PM.

Sis58 · 08-26-2005, 09:18 PM

Hi. I was diagnosed with dermatomyositis in Dec. 2004. It has been a real journey. What are your symptoms and how are you feeling now?

Nikkamo · 09-06-2005, 03:38 PM

Sorry it has taken me a long time to reply, I was on vacation.

I was diagnosed in Oct 2004. It has been a journey!!! To make a very long story short I started out with the most intense pain I have ever had, my CPK was at 17,000. My weight was 200lbs (now 140lbs) at first the norm....not able to get out of chairs, toliets, or climb stairs. Have been on all sorts of drugs....now I am slowly making progress...very slowly!!

What kind of treatments have you had?

Aquiel · 10-06-2005, 09:37 PM

I too suffer from DM. I also suffer from SLE (Lucky me, I know).

I was diagnosied in July of 2004. I'd been suffering "mildly" for over a year before this, and starting in March things started getting worse, and finally in the end of July a doctor took one look at me and knew something was wrong. (I assumed everything was due to overworking, undersleeping etc--though couldn't get why I had a red face and rash on my arms and hands).

Its been a rough year, I'm still not better, its seems everytime it looks like im in remission, i flare up again. The really annoying part is that my blood work always come back "normal" thanks to the meds im on.

Ive been getting IVIG since May of 2005 and am disapointed that it hasn't helped as much as i thought (or was told) it would.

At the moment, Im flaring up once again. I'm at a loss as to what i should do, accept wait...wait...and wait some more.

summer885 · 04-09-2006, 11:53 PM

Aquiel,
Hi my name is Terri and I have the exact two same diseases, wow. Lupus and dermatomyositis. I was diagnosed about two years ago with the same symptoms as you. The stress in my life at the time is probably what put my immune system over the "brink" so to speak. I wasn't sleeping right, worrying, just plain not taking care of myself and worrying to much about my husband at the time.

After two years now my health has finally stabled out. It does get better, just keep on taking care of yourself. Sleep is so important with DM, I know when I don't get enough sleep my muscles hurt the next day all day long. Our T cells need to be rejuvenated every night.

Hope to hear from you, Terri