Dermatomyositis questions - Myositis Message Board

Sis58 · 05-21-2005, 11:02 PM

I hope I can find somebody with DM. My dr. was very concerned the 1st 2 times I saw him, but yesterday, he said because my muscle enzyme tests are okay, I don't have DM-just a rash. The rash is now under my eyes also, more on my hands and fingers, muscle pain in my right upper thigh and I have been very short of breath. Also quite fatigued. He listened to my chest and said I was really wheezy. He asked if I had asthma and I said yes-but it has been under control very well for 5 years. The shortness of breath is something new. He said it was an asthma flare. I felt so bad when i left. I know i don't feel good any more. I work full time and play volleyball every Thurs evening. But lately, it is all I can do to pull enough strength/energy together to go, and then I leave early. I just need to talk to someone who understands. I feel like I am going nuts.

Nikkamo · 08-17-2005, 04:06 PM

I have had DM since Oct. 2004.

mreavis · 05-23-2006, 10:14 AM

I have dermatomyositis that was diagnosed 4/04 by a dermatologist who then refered me to a rheumatologist. I live on the eastern shore of MD and it became obvious that the DRs I was seeing had never seen a case of the disease as they had only read about it in medical books. My DR from Baltimore for my diadetes got me a rheumatologist at John's Hopkins.
My disease goes in and out - active to inactive and back - and that is irritating but there is little that can be done. My DR is a research DR so I am on prednisone, methothrexate and humira [forgive my spelling] and today feel pretty good but it is active.
This disease does not go away. The blood levels can be perfectly normal and the disease be active - the meds keep the blood levels normal.
I have pain, muscle cramping, neck pain, shortness of breath, fatigue, trouble sleeping, trouble swallowing, trouble holding my head up - I have these things not all the time but in and out.
These are only my experiences and my suggestions. You need a DR that you have a very good relationship with and will listen to you as the patient. You need to keep a positive attitude and keep your faith, if you are a believer. You need support around you as this disease can be very difficult to deal with physically and emotionally.
I hope you feel better soon.
Muriel

Achim · 07-02-2006, 12:43 PM

Not much I an add except to share the pain. I have been diagnosed 6 months ago. Have the butterfly on my face and my upper body is all read.....slowly seems to progress...am an Plaquenil for now. Prednison is not something I want to use on a continuous basis.
Have tried vitamines, detox tablets, now on Glyconutrients....will let you know if I find something that works.
Best wishes
Achim

Achim · 07-02-2006, 12:48 PM

how old are you all. I am 46, vagely remember having taken Penicilin a while back. People say this may trigger DM. My dermatologist mentioned I should move to Alaska given the sun light here in Idaho. Does anyone with DM have same issue with sun light? Has anyone tried Glyconutrients?