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...
I have been doing pretty well for the last couple of years with the MCTD, UCTD, or Lupus, depending upon which Dr you talk to. Negative labs, controlled pain and swelling, ect. But the last 2 days have been hell. I didnt sleep well for the last 2 night due to generalized pain. Then, had trouble getting out of bed. My back went into spasms but that was just the beginning. Pain in my feet and toes, my knees, hips, ribs are sore, whole back, neck, shoulders, elbows, hands and fingers and jaw! Geeze! forgot the wrists and ankles! What a mess! Guess, I am out of remission....do ya think? I hoped that once I got the UTIs under control, I would feel better. And I did, for about 2 weeks. Is it a sin to want to live and be able to actually have a life? Guess, I start all over. I will give it a few days and if I dont calm down, I will try to get into the rheumy. I dont have an appointment for awhile as he put me on 1 year follow up at the last visit. Well, that is the end of my whine. Hope all of you are doing well today.
Mary Ann
I am very lucky that I have a job with a flexible schedule. To anyone who is just starting this journey, that is the ONE thing I would advise doing ASAP. And choose sports and activities you can bail out of easily-- where you can do short sessions.
And I am really lucky I love the rest of my life-- my wife, my job, my friends, my dogs. I am a really happy, upbeat person. It's just very weird getting exhausted doing something like going to the supermarket and realizing, "Wow-- I am too exhausted to be doing this. Let's get exactly 15 items so I don't have to wait in a long line and don't have too much to carry, and get the hell out of here."
MT, you've done a great job rolling with the punches, modifying your career and hobbies as this thing morphs and changes with the passing years. And you'll do it again.
You said it yourself a month or two ago-- don't become immobile, no matter what. Don't stay in bed. That really stuck with me. And thanks for reminding me to follow up with my rheumatologist-- I am due for an appointment myself, it's been a year!
Best,
--Kat
Do you have any steroids you can use until you get an appointment in with your Rhuematologist? Maybe 5mgs twice a day for maybe a week and then taper off? My Rhuematolost taught me when and how to use my steroids. I fight the exact same battle you do. This is going on 20 years now. Get in to see your Rheum. and explain your need to be working together (teamwork.) Keep in touch. We hate you are going thru this, but you are not allow. Note: You may need to see other specialists because of your now complexity. I have many doctors that assist me. Please don't be afraid to call your doctor(s). They won't know unless you tell them. Praying for you! Gail
Mary Ann