
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...

Hi all. Glad to have found this forum, alternating between trying to pretend I don't have MCTD and bawling my eyes out about it. I am newly diagnosed, waiting on an appointment with a rheumatologist. I'm 42 years old, no previous health problems whatsoever. Healthy. No medicaions, active, work full time as a nurse and always on the go. I went on vacation and did a pretty vigorous bike ride. Next morning, noticed my knees were sore. That night, even more sore...as in difficulty walking. Progressed from severe knee pain to what I thought was my Achilles heel flaring up...saw a doctor who was concerned I had torn it. Had an MRI, positive for muscle tear. However by this point, my other ankle flared up also. Could not walk, ankles huge, can't go up or down stairs. Knees still stiff, creaky, sore. Finally break down and take medrol pack the orthopedist had prescribed. Miracle drugs. Feel completely normal by the finish of the pack. Two days later, steroids wore off, almost bedridden again. Go to see my family doctor, had some labwork done, and here we are at this diagnosis with positive ANA, RNP antibodies, elevated sed rate, elevated crp and having to take 10mg prednisone just to be able to function. Very scared about the future, my future ability to work, and wanting to go crawl in a hole. I need some encouragement, husband doesnt understand and my parents just look at me with such pity I can't stand it. I hope there is life after this diagnosis. Not sure I can do this.
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Hello All! I'm new on here and have just been diagnosed almost 2 months ago with MCTD after a year of symptoms. I've had bad fatigue off and on through out the year but this past month it has been extreme faint feeling and nauseous type of fatigue. Like I cant even lift my arms I'm so tired. I don't go back to Rheumy for another month. My question is has any of you experienced fatigue like that...
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I have not been able to post lately as my life is a mess right now. My husband has prostate cancer and had surgery in November. The Dr had great hopes for a cure with surgery and assured him that he would have bladder control with in 6 months. Well, the tumor was small, not really agressive but was up against the rectum and so he could not get it all. He was to have his catheter out in a week, it...
Mary Ann
The other thing that was critical for me was finding a job where I didn't have to work regular hours. I'm a therapist, so about 25 hours a week are a the office and the other 15 or 20 are paperwork at home. I almost always have a cancellation every day-- and during that cancellation, I meditate or sleep. It's a completely different way of living... much more dog-like. I don't know that it's a "normal" life, though I don't want to split hairs, because I agree with the spirit of what '83 said.
Then you have to learn how to avoid the isolation. I have about eight friends who are in rotation for long phone conversations, and I'm in AA so I get group interaction a minimum of two or three times a week. The hardest thing for me is group dinners because I have trouble swallowing and it takes me forever to eat-- but I can do that sometimes with groups of close friends who understand what's going on with my health.
Give your friends and family time. Some will get it eventually, some won't. Some will fall away for a couple of years but then tiptoe back into your life, and you can set up some new rituals and routines with them. With pity, sometimes you have to be assertive, sometimes forcefully. "Look, I love you, but seriously, cut the sh*t. This isn't helpful." When you find your strengths-- sports, hobbies, whatever-- that MCTD can't take away from you, you can excel at them, and people will remember you for that. Welcome!
- My face is affected. I try not to care. I smile and look people in the eye just as if it wasn't. It generally gets good results and frankly, I feel like I actually see people more than I used to.
- I have a thirty-second "elevator speech" about my condition that I use when people ask what's up. I say it and then I move on. I do not want to talk about my condition, I want to live my life. Talking about it is not going to change it. I save real indepth talking about it for the people who are my "support."
- I try to stay off Google regarding UCTD and DLE unless I am researching something specific that may add to my care.
Very glad to have found this group!
Your MCTD flare seems to have come out of the blue ... but as you get more familiar with the insidious nature of MCTD (and reading posts on this board will help you to realize this) - you will find that some weird unexplained medical condition - night sweats, very unusually cold hands, swelling of the ankles, etc. - was likely nascent MCTD.
Changing diet to less processed more whole food, less (or no) meat and dairy protein... veggie proteins work wonders ... adding in anti-inflammation foods/supplements like turmeric ... really makes a difference. As does regular exercise, mediation and sleep routines.
Good luck on your journey ... I pray you will see improvements and remission.
I've always been a pretty content person but this is taking a toll. I don't want to add antidepressants to my drug regimen but I have to do something to pull me out of this hole. I'm praying my mental health recovers as my body does. I also feel guilty, like I should quit whining about it, I Know there are people who have worse symptoms and diagnoses than I do. Thank you all for listening.
Have you tried journaling you days? What you eat, what you did (time outside in sun, exercising, play), alcohol consumption, etc. it may be a way to find clues as to why your flare is worse some days/times than others.
It's such a relief to find this group. I'm not crazy. The hair loss the bad days when you forget where the car keys are. When you can't wake up. And you need to ask for help opening jars. Those impossible stairs. Or family and friends wondering what a put on you are doing. Sigh. Thank God I'm not crazy; I know now cause reading a lot of the posts here I'm relieved I'm not alone and I'm not crazy
Most of the expense of this illness, for me, is simply my health insurance premiums and the cost of cannabis oil, which runs about $230 a month.
Funny about waking up... for me, that's not the problem. It's a happy day I'm comfortable enough to sleep more than about 6 and a half hours, but getting out of bed-- that's a different situation entirely!