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How do you cope with Mixed Connective Tissue Disease (MCTD)?
Autoimmune Diseases | Last Active: 2 days ago | Replies (107)Comment receiving replies
Thank you for your post mctd43years! I got diagnosed in my forties but symptoms appeared in my mid twenties. I found that talking to other people about my symptoms helped tremendously and also helped me find some really amazing specialists! You may never know who else has same symptoms as you.
My friends always say that I am the right person to get MCTD because no matter what is dealt to me, I keep going and smiling through it all. But sometimes it’s hard and that’s why I appreciated your post. I needed a reminder to keep smiling because lately I have been crying and yelling to God for my constant upper respiratory infections. I am tired though of being sick for so long. Thank you for helping me realize that there are people out there with more issues than mine. 🙏🙏
Replies to "Thank you for your post mctd43years! I got diagnosed in my forties but symptoms appeared in..."
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
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Dear Dee5, I totally understand where you are coming from. It would be so easy to just give up. But we are fighters and have great determination to move on and appreciate life. I hope you get better soon. Keep smiling.