MCTD (Mixed Connective Tissue Disease)

Thank you for your comments. I am so tired of the covid vaccine being blamed for everything under the sun. I have heart disease, lupus, celiac disease, & ulcerative colitis, and have been successfully vaccinated and boosted. My body REALLY didn't appreciate the first Moderna shot -- I was sick for more than two weeks with fever, sore throat, swollen glands and exhaustion, and my vaccinated arm was red and swollen. But I continued with the series because the prospect of getting COVID on top of my other illnesses seemed like a sure death sentence. With each successive shot my side effects diminished, and I now have had my second booster with no side effects at all.

Nighttime is hard. I take a marijuana gummy for sleep. My rheumatologist helped me get the medical marijuana license..

Hi, I am 70 years old and a 43+ year survivor of MCTD. I have so many illnesses now it is a joke with me and my doctors. The only way to survive this it to realize that you cannot do anything about it. It will be what it will be. Just learn to live with one thing at a time. Realize that you may not be able to do this but you can still do that. Change to doing things that matter and let the other things go. Make sure your partner and children understands what you are going through on a simple explanation basis so they understands why you can't do what you use to. Let them help you by taking some of the household chores off your shoulders. I also find meditation and deep breathing (especially through the pain) very helpful. It took years to master but it was well worth it. Good luck to you and remember, keep smiling.

Thank you for sharing . I'm learning to do exactly what you said. I'm 64 and I'm 6 years into mctd

I am 60 was diagnosed when I was 53 . Have multiple nodules on my thyroid multiple. Also a goiter. But the thyroid is still functioning in the normal range. I also have multiple lung nodules, NO cancer( thank you lord) c.o.p.d and lots of joint pain. been experiencing chest pain and having heart spasms. I had and abnormal stress test so they did a heart cath. no blockages . I had a major spasm as they were comming out of my arm during the cath. The surgeon gave me some nitro to help with these frequent spasms. But the head ache is as bad as the heart spasms my blood pressure is normal and my a1c is 5. So those are not factors I am over weight . Has anyone had anything like this happen to them? If so what has been your out come ? I take hydroxichlorquine ,venlafaxine,linzess, omepazole and tizanidine @ night a multi vitamin D3 and b complex.

Wish we had that in our state since smoking is no longer an option for me. Are you in a state where weed is legal? It's not here nor are the gummies. Thc. was a great sleep aid for me. But no smoking with C.o.p.d

I hear ya the pain can be maddening. But you need to keep moving as much as possible . Your inflammation levels are why so many flares. I found a low inflammatory diet is helping me limited glutton and no sugar .easy on the starches. Also water water water it's your best friend. Flushes out the impurities that can build up in folks like us.Also keep an eye on your liver. Some of these meds get pretty toxic .your diet make a lot of difference and if your over weight as I got from a prorated foot and other joint pain. I was non weight bearing for 3 months. Get your weight down. A good diet less stress and lowering blood sugar helped with the constant flares. Linzess helped my ibs and the colon inflammation. I hope this is some help to you. i also read from my Bible every morning it helps keep me sane. Bless you and good luck .

Many of us were A type personalities and, over time, one has to learn to pace themselves. One simply cannot manage busy days in succession. It is better to plan ahead; slow day before a full day and a relaxed schedule the next day. On busy days, make sure you stay hydrated, eat well and take breaks. My household, diet and life had to become less busy and I had to learn to say No when my system was at low ebb. I was diagnosed in 1996 and worked full time until retirement in 2014. Do not do what I did: I retired with over six weeks of unused sick time: take that late morning start or leave early as part of FMLA to make things easier.

I just got the Sept 2023 covid, took the Paxlovid and will see how it goes. I pretty much avoided long term respiratory illness, with little coughing this time. I am on day 6.

My difficulty with MCTD is my specialists only look at it from their expertise and not how all issues affects me. I feel I’m fighting on my own.