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

I'm in the same condition as you, and I'm GRATEFUL for that. So many have it much worse. Plaquinil really helped the dryness. I don't have too much joint pain. My biggest problem is the constant fatigue. It could be worse, but the consistency of it wears me out. I have little desire for exercise and don't play my guitar as much. The constancy of the fatigue demotivates me. Even concentrating hard (reading, for example) makes me more fatigued. I've been diagnosed for one year, with 2-3 flares. The good news is that not everyone progresses to severe disease. Some even go into remission. There's always hope.

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...

@believe1 Welcome to Mayo Clinic Connect! You’ve come to the right place to discuss your disease. And I see that you’ve already gotten in discussions with other members. Feel free to ask any questions that might come up!

I use Celebrex to relieve the inflammation, which helps with a lot of the pain. I use Nabilone (prescription opioid) for the fatigue. Over the years I have used many different drugs, depending on where I was with my disease. It is important to keep informed about where you are with your disease activity so you can work with the doctors to get the right meds for you. Keep smiling.

Hello everyone feeling and dealing with mctd this is my first connection. I was diagnosed 3 months ago and it had been a huge psychological adjustment. I was always able to do all sports to quite a high level for my age 73. I would place in cross country, biking
and running events . Now I can't it was a big part of my social and fun life. I'm learning to do mobility yoga water aerobics and other things. Luckily I like to swim. Pain management is hard. If anyone has ideas besides euthanasia let me know..just kidding but sometimes I feel that way. I 😘 like having my wits about me but pain is exhausting. I feel for all of us learning to live and enjoy this life and the people we love. I want to stay happy to and care about others.

I also use a mild opioid, tramadol (Ultram), which helps both fatigue and mood.

Thanks

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Very nice all

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It is always weird to have MCTD. I tell people I am a hothouse plant; most will not understand the details and I do not need the validation. I was diagnosed in 1996 and still have to figure things out, which doctor to go to. Now I am lucky to have insurance that allows self referrals--PPO choice. I have gastric issues (hiatal hernia), but not Barretts. I do best on a simple, non-processed diet. Webmd has the best practices: https://www.webmd.com/heartburn-gerd/causes-of-heartburn I drink Camomile tea at night if my stomach is uneasy after a meal. Lately, iced drinks are a culprit. Make sure you take a daily walk and keep up your core muscles, which is important for your gastric/urinary system. It can take a couple of years to get the meds right. I was on injectable Methotrexate for more than a decade and it worked. The day (Friday) of injection, I did have to eat right, take it easy at work and go to bed early. I was able to work fulltime to retirement. It took care of much of the swelling and back then, I was able to take NSAIDs. Etodolac/Lodine is buffered, but Naprosyn also worked well. I try to use pain control at night so I sleep well, less during the day when I can move. Ask for PT referral--I prefer the ones with EDS or osteopathic specialty. Dr Jo online has good stretches for whatever aches. Hip/lower back is common: https://www.youtube.com/watch?v=4UoITjubrgE Water exercise is great, as it helps keep your flexibility without pain while you are in the water. Skin: I use benedryl cream for stinging areas, Blue Australian aloe repair for sunburn on other places, as it is a spray. Usually you can find a Lupus self-help group that works, as we have many of the same symptoms. I got some good, practical ideas from there. On FB, I find this site is good for newbies: https://www.facebook.com/groups/mctdlifestyle

Tramadal gives me diarrhea and nausea. I had to rename it as "damnitall." Glad it helps you!