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...
Time for a new one. We filled the old one up! It was great to hear from everyone, even the lurkers! LOL!
I had a lot of company the last 2 weeks. It was fun but I was sooooo tired. After they all left yesterday, I took a 3 hour nap. Then slept 9 hours last night. I feel better today, but the fatigue has been hitting me hard for the last month or so. Not just with company. It is very frustrating and hard to do anything.
The joint and muscle pain is not getting any worse. Arthritis Tylenol helps, not as much as the Celebrex. Without the Celebrex, my stomach feels so much better. Not so much nausea either.
My vision is weird. I am due to see the ophthalmologist which is a good thing. I think it is floaters, but sometimes I cannot focus or I will have blurry spots in my vision.
It has gotten HOT here. I dont do so well with heat and my hair does not do so well with humidity! LOL! In fact, my face breaks out with the heat. I thought this acne would go away with my teenage years, but, at 60, I have as much as I ever did. Steroids? Although I am on a very small dose.
Hope everyone is well and hope to hear from you.
Mary Ann
I had a lot of company the last 2 weeks. It was fun but I was sooooo tired. After they all left yesterday, I took a 3 hour nap. Then slept 9 hours last night. I feel better today, but the fatigue has been hitting me hard for the last month or so. Not just with company. It is very frustrating and hard to do anything.
The joint and muscle pain is not getting any worse. Arthritis Tylenol helps, not as much as the Celebrex. Without the Celebrex, my stomach feels so much better. Not so much nausea either.
My vision is weird. I am due to see the ophthalmologist which is a good thing. I think it is floaters, but sometimes I cannot focus or I will have blurry spots in my vision.
It has gotten HOT here. I dont do so well with heat and my hair does not do so well with humidity! LOL! In fact, my face breaks out with the heat. I thought this acne would go away with my teenage years, but, at 60, I have as much as I ever did. Steroids? Although I am on a very small dose.
Hope everyone is well and hope to hear from you.
Mary Ann
It's great to hear that some people are doing well despite MCTD. For those who are struggling, hang in there. Just knowing that I'm not alone in this situation and hearing about others' challenges and triumphs is a blessing!
I'm recovering from surgery not related to autoimmune disease and am looking forward to feeling better soon. Sleeping and watching lots of trashy daytime TV while I recuperate. :)
Got my first echo and it showed mild effusion that doesn't require any treatment at this point. Today when I went to the dr my blood pressure was on the low side (100/63) and my pulse was 138! That doesn't sound good to me but the cardiologist gave me a clean bill of health before surgery, so I guess I won't worry about it...
Take care of yourselves.
I could cry.
Mary Ann
Robert, please don't leave this group. I'm sorry someone posted you should join another group. I would miss your writings and would wonder how you are doing. It stinks you have a staph infection. Maybe being pulled off your drugs and starting all over will help. Sometimes I think we forget the meds can be pretty detrimental to our health too. I get why some refuse to go on medication.
As for me I have decided to stop lurking. Maybe you all can help me be accountable. Well Monday came and went and so did exercise and diet. So trying again. I have shortness iof breath and need t o get that checked out...pretty sure it's because of the weight but am afraid it could be more. Although I'm feeling pretty well. I need to get some routine tests ( because of my age) done that I've been putting off. Colonoscopy, routine blood tests~ cholesterol, AC1. I'm 55 and haven't had them done in a long time. My rhuemy does regular blood work but it doesn't include those. My C reactive protein has been in normal range so that's good. I guess I'm just looking for an ok to start exercise. I am doing more and still feeling better. The aches and pain I have now I think is more from the arthritis I have than from MCTD.
Another thing I am realizing is how hard it is to write about my self. Thank you all for sharing.
Terrilynne
My problem of late is anxiety and extreme butterflies in my belly. I dont know what is making me so anxious! I am unhappy at work, but it isnt the worst job in the world. I cant seem to find a new one, but Ill keep looking.
Be well everyone! Robert, please stay in the group!
Gabrielle
Robert, please don't leave! Whoever told you to go join another group was wrong to do so. Don't let that person tell you what to do! You and everyone else is much appreciated here, and like someone else said, everyone's input helps all of us out a lot.
-Marianne
Robert I haven't met you but whoever upset you on DS should apologize because we're all standing around you in a protective circle! Tell them, You have to get through us before we'll let you talk to Robert!
Tricia
Anyway, I've had quite a few flares and get very frustrated. The heat IS hard...but then again, what ISN'T hard?
I'm gratefull though that I can still have fun. Distractions are my best friend.
As for me the storm fronts along with the humidity are seriously kicking my but. I also caught a cold & can't remember the last time I was sick. It's probaly been a good two to three year run. Last year everyone in the house kept catching one strain or another & somehow I managed to avoid them all. I'm still not sure if it was my immune system fighting things off, or the minocycline that I was taking. Anyway, I hope the cold doesn't decide to make up for lost time.
Cheers,
Jen
Robert, I hope you're feeling better today than you were on Monday. I do! That's when I had my endoscopy and colonoscopy! After all these months, it seems the chest pain has been caused by ulcers in my esophagus and stomach.... yay me, another medication to add to the list. At least it's not caused by the MCTD!
After weeks of moping about, I've decided I can no longer take the extra weight I've found since I started taking the gabapentin and prednisone about a year ago so I quit taking both of them. Yup, cold turkey; I just don't care anymore. I'm tired of looking as miserable as I feel. I see my rheumy in a couple of weeks and am thinking that maybe I should stop all meds. Really, what's the use, I hurt with or without them.
Otherwise, all is good. It's the start of a 3-day weekend and I hope to do as little as possible!!! Ha! Hope everyone's feeling good and has a fun time! Peace to all and be well :-)
I think they sAid. Fluid on the lungs. but instead of gaining weight from prednisone like we all thought (doctors who cleared me to have my shoulder replaced this thur) 25 lbs in fluid, FLASH on your lungs, I dont know why other than congestive heart failure they say. Sorry i was upset, i knew something was wrong and they didnt. But cpap can help you have PFA. It takes a load off your lungs and gives oxygen. Then you get off it when you wake up and start to walk. POOF you can almost not breath, within a few minutes you have stopped. Good kids ,wife and area medical got me here.
weight gain of 3lbs in a day and 5 lbs in a week, both are bad numbers. keep an eye on it if you have any heart or lung stuff. if i realized what was happening i could have taken water pills dailey.
Robert