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...

614 Members
1,869 Posts
0 Online
Allergies & Immunity
/ MCTD Support Group

It's Getting Worse

JasadezAnn
JasadezAnn

Hi everyone, my name is Sadie and i'm new here to this group. I was officially diagnosed with MCTD right after I turned 20, and i'm almost 23. I suffer from severe Hypothyroidism, Anemia, severe Raynauds, muscle pain, joint pain, fatigue, and Depression. I was offically diagnosed after coming down with Mono and it landing me in the ER which resulted in a week-long stay at the hospital. My body wasn't getting any better, and I was in A LOT of pain but the doctors had no idea what was wrong with me. Finally after speaking to what seemed like every doctor in the hospital, one reccomended I see a Rheumatologist. Unfortunatly, to see this doctor I had to wait almost 3 months. In that three months my body got worse and worse, making me unable to drive, shower without the door open, or do anything more than pace around my house. We tried one medication that I cant remember the name of.. that definitely didn't do anything except make me dizzy. We then tried Prednisone for a couple weeks, and all that seemed to do was make me hungry and my cheeks swell up like a chipmunk. Since then, i've had a couple more hospital stays but nothing had really gotten "worse" until a month or so ago. My entire body is in pain, from the inside out. Even the smallest brush up against my skin hurts. I'm very very tired. My hands keep tingling and then cramping up.. resulting in me dropping everything. I can't do anything without being in pain. I can hardly get dressed by myself right now.. I feel so helpless. I'm waiting to get into a new Rheumatologist, and I should be in by the end of March. Fingers crossed this isn't as bad as I think it is. 

MToennis
MToennis
I am so sorry you are having such a bad time. Hopefully, the new doc can get you stabilized. You need a long term med that can reduce your flares and shorten them. I advise you to get copies of your medical records form your old Rheumatologist so the new one knows where to start. These autoimmune diseases can be tough to control, especially at first. Regular care is important so keep your family dr in the loop. Good luck to you.
Mary Ann
JasadezAnn
JasadezAnn
Thank you!
Katalyzt
Katalyzt
Agree with MT: "tough to control especially at first" was my experience. Here is hoping the meds work; you may not need to take them forever. Hopefully you'll get to that plateau many of us experience after the first initial blast of symptoms, which, for some of us, is the worst part of the illness. (Or one of the worst parts.)

I hate dropping things. I still have bouts of that, mostly guitar picks, and I've always thought that was MCTD, though that seem to be improving. The pain and cramping and pins and needles stuff in muscles was awful, I remember it like it was yesterday, though it was over 40 years ago. It felt like electricity was rippling through my legs.
brunob
brunob
One of the first meds I was on after the pred. was plaquenil and for me it settled everything down quickly and it is still working now after 8 years. I hope you find some relief. If you're able to find a Rheumatologist at a teaching hospital that might make a difference
Prilly
Prilly
I just found out in January that i have mctd. Was told ovwr the phone. It was horrible reading all by myself what i had. I got a second opinion just this past early April of this month and knew he was going to say for sure it was because of my ANA and rnp levels are through the roof! Already on Plaquenil and while it does absolutely nothing for my joint pain or fatigue I know from research that it is the best thing to protect my organs from this disease. I am allergic to any kind of steroids so unfortunately I cannot take that which hinders any sort of help I can get. Hoping that you find what you need! I even go to pain management but it doesn't even help but just minimally. For me the fatigue is the worst part. I literally sometimes almost feel like I'm about to pass out and sometimes I sleep so hard that I feel paralyzed that I can't move. I will be praying for you and for the best help that you can get! You are so young and I hate this for you! I am 43 and have 4 boys and it's so hard for me and you're just starting your life!