How do you cope with Mixed Connective Tissue Disease (MCTD)?

I'm sorry to hear that you have it so bad. It seems we're all stuck with tackling the disease by a seperate medication for each manifestation, trying to get mild exercise and adequate sleep, and hoping for some periods of relative remissions. Plaquinil has helped me a lot with dryness, wherever it appears, and tramadol (mild opiate) has helped with the fatigue and the blues. Best of luck, and be sure you have a top rheumatologist.

Hopefully you've been able to find some comfort and solutions. I've had it for 20 years. Imuran and Plaquenil low doses daily and advil and Tylenol when needed. Epsom salt baths, especially during flares and bed rest and good books. Patience with yourself and a lower stress life are essential . Yoga, meditation, green drink every morning kale, cucumber, ginger block, apple, pear, orange, made with a little pineapple juice and water. Make enough for 3 days, store in fridge. Limit processed foods, eat more simply and shore up your digestion with plain organic yogurt and kefir. Will help with stomach issues including Gerd. Oh yes 40 mg tecta when needed. Keep active , 15, 20, 30 + Youtube exercise videos to increase your heart rate and flexibility as daily as possible. Try Glutathione and alphalipoic acid daily which will begin to help with the fatigue. I also take NAC for my interstitial lung disease. I take Calcium, vitamin D , magnesium, ashwaganda , vitamin E, Siberia ginseng , multivitamin, multi B, milk thistle. Flares effect almost every system, eyes, digestion , ability to pee, skin rashes, cause Pericarditis and electrifying skin muscle and joint pain like fireworks in my tissues. Everything hurts but I'm my biggest project and go on prednisone until it passes. So far I've been lucky, rest and begin to feel ok until the next unexpected flare. Any infection with me will trigger one. Good days and bad days. Your friends and family will begin to understand the mystery of MCTD, share your experiences it creates understanding.
You need to put your health management close to the top of your list to calm the symptoms so you can cope. Try different things , eat well, be calm you can find ways to manage and get a life back
Use your free will to chose happy and get control back. You can do it. Hugs.

Thank you for your response. A little of good information. You can do cucumbers??? I'm completely lectin intolerant. I seemed to have gotten through my first flare (9 months..)... i have a strong belief that I am swimming in the gamet... rheumatoid, lupus, scleroderma, myositis, and Sjogrens.... at minimum... I dont have a lot to compare to but I think im getting nailed... but I seem to be managing... all day long I'm evaluating what I need to adjust... right now I seem to have respiratory inflammation... its a lot... its nice to know we have others to connect with. I greatly appreciate this.

Hopefully you've been able to find some comfort and solutions. I've had it for 20 years. Imuran and Plaquenil low doses daily and advil and Tylenol when needed. Epsom salt baths, especially during flares and bed rest and good books. Patience with yourself and a lower stress life are essential . Yoga, meditation, green drink every morning kale, cucumber, ginger block, apple, pear, orange, made with a little pineapple juice and water. Make enough for 3 days, store in fridge. Limit processed foods, eat more simply and shore up your digestion with plain organic yogurt and kefir. Will help with stomach issues including Gerd. Oh yes 40 mg tecta when needed. Keep active , 15, 20, 30 + Youtube exercise videos to increase your heart rate and flexibility as daily as possible. Try Glutathione and alphalipoic acid daily which will begin to help with the fatigue. I also take NAC for my interstitial lung disease. I take Calcium, vitamin D , magnesium, ashwaganda , vitamin E, Siberia ginseng , multivitamin, multi B, milk thistle. Flares effect almost every system, eyes, digestion , ability to pee, skin rashes, cause Pericarditis and electrifying skin muscle and joint pain like fireworks in my tissues. Everything hurts but I'm my biggest project and go on prednisone until it passes. So far I've been lucky, rest and begin to feel ok until the next unexpected flare. Any infection with me will trigger one. Good days and bad days. Your friends and family will begin to understand the mystery of MCTD, share your experiences it creates understanding.
You need to put your health management close to the top of your list to calm the symptoms so you can cope. Try different things , eat well, be calm you can find ways to manage and get a life back
Use your free will to chose happy and get control back. You can do it. Hugs.

Your excellent suggestions and positive outlook on getting to figure to this out are welcome.

I don't want to make this health situation all about me even though actually it is now. I don't want I to impact my relationship with my husband. He has been very supportive.

Thank you for your response. A little of good information. You can do cucumbers??? I'm completely lectin intolerant. I seemed to have gotten through my first flare (9 months..)... i have a strong belief that I am swimming in the gamet... rheumatoid, lupus, scleroderma, myositis, and Sjogrens.... at minimum... I dont have a lot to compare to but I think im getting nailed... but I seem to be managing... all day long I'm evaluating what I need to adjust... right now I seem to have respiratory inflammation... its a lot... its nice to know we have others to connect with. I greatly appreciate this.

I have had terrible fatigue as well... my answe to everything:hand pain, fatigue, lupus symptoms... is sweating it out on my bike.... i can't believe how much it help me... i just got over my first real flare. It lasted 9 months. Looking back at my lufe i have had flares, but nothing as identifiable as my current condition. I didn't think I'd ever emerge from that flare... obviously I'm not symptom free, but not nearly as bad... im trying to manage so much... just over a week ago I realized the onset of gastropheresis - again, really complexes things but I'm working through it... my hands are a never ending battle that I seem to be mostly managing... i struggle with Dryness but am getting by...

A nine month glare...GOD ALMIGHTY !! That sounds like hell. Plaquinil and Aleve , hot showers, tramadol , heating pad, all help me. However, nothing helps the chronic fatigue except temporarily and unfortunately that's my most debilitating symptom. Everything that used to be fun I now have to force myself to do. However, you have my best wishes, as you certainly have it worse than me. I guess I should stop whining and be grateful, LOL.

Yes, MCTD is an odd duck. I get respiratory inflammation as well, hard to breathe and stabbing pain in my left chest, they've chalked it up to pleurisy. Joint pain, tissue pain, esophageal dismotility , digestion kind of shuts down, weak urine stream, extreme fatigue , my vision becomes weaker , giant cell enteritis. It encompasses so many systems that it's hard to figure out what doesn't hurt. I now also have severe scoliosis and low bone density. No matter , I've been able to shut these flares down ( sometimes 6 weeks) then get back to long walks and Youtube aerobic work outs to build my strength and endurance. You are your biggest and most important project . Cucumber is fine , I'm ok with the nightshade vegetables as well. Blended vegetables green drink will provide your digestion with much needed prebiotics. Your immune system is 75% in your gut
So it's a good place to begin. It may not go away but you can make your experience with autoimmune failure much better. You can do it.
Hugs