MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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New Diagnosis

Kimba63
Kimba63

Hi, everyone. I'm a 55 year old female who has just been diagnosed as likely MCTD. I don't have an appointment with a rheumatologist until several weeks from now.  I have a question about flares and whether the feeling of being unwell is only present during flares or all the time.  I feel like I might have had this for a long time - even since childhood.  I have always been weak and not able to exercise although I have always been fairly healthy.  I had one incident of iritis 20 years ago.  My eye doctor asked me if I had an auto immune disease and I said "no" because I had never even suspected it. Arthritis runs in my family, so I have always blamed my pain on that.  I also have Raynauds when it's cold, but I never realized that was an auto immune issue.  I had a bad virus in January and everything went downhill after that.  The biggest thing I realize is that I am always tired -- but now like you are when you don't get enough sleep.  This is a kind of overwhelming fatigue.  My doctor tells me that I've tested positive but that the disease is not active.  I'm not sure I understand that.  I don't even know what questions I have.  I'm a mixture of totally freaked out and relieved that I'm finally on a path to get some answers.  I'll be back frequently because this is all new to me. 

MToennis
MToennis
They say my disease is not active at the moment and I am also tired all the time! I have had years of remissions in the past with pretty good energy, but I always amazed people with the amount of sleep I needed. I dont think it is unusual at all. Not having active disease is good. Your organs are not being bombarded with antibodies right now. You will last longer! LOL!
There are tons of questions with this disease and the answers are not always clear. I am glad you found us. Maybe we can help you and you can help us. That is what support is all about. Welcome!
Mary Ann
Lupusme
Lupusme
I just turned 55 today and have been diagnosed with MCTD late June. Im sure Ive had this disease for years as I too did not have the strength or energy as others seem to have. I feel like I stay in pain all the time.
Katalyzt
Katalyzt
Welcome-- I, too, have had weird eye problems ('lesions in the stroma') that come and go, and my eyes often sting or ache, leading to bad headaches-- one of my worst symptoms.

I don't feel sick all the time, though some days I do have very little energy. I find I can do almost anything a reasonably fit guy my age (60) can do, but not for as long. If I swim, it's only a half mile. If I body board, only for 20-35 minutes most times I go out (and there are many days I can't.) If I ski, it's for three to five hours.

I am not in pain all the time. The morning stiffness responds very, very well to CBD oil-- the pain is a little better, too, though only a partial response. 11:00 to 3:00 is usually excellent, and 7:00 to midnight is either good or I have a bad headache.

Anyway, glad you joined, keep reporting back.