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.