How do you cope with Mixed Connective Tissue Disease?

It is definitely hard when the doctors don't know what to do with you… I can relate in many ways.
I have been diagnosed with MCTD since 2002. Right away I was put on hydroxychloroquine and fortunately I haven’t had side effects from it. They also added Arava a few years later. Because my Scaladerma is dominant, they gave me Rituxin and now they just took me off it as they feel that I am overly immuno suppressed.
Overall I’m feeling fine except for the out of breathness. Drs haven’t been figured out why I am having issues but hopefully stopping Rituxin will do the trick. It is frustrating but keep having a positive attitude. God bless🙏

@tabathab Your positive mindset will help you through this, but be kind to yourself, even if it's hard to do. Pushing too hard can be exhausting.
My doctor's concerned about longterm damage, so i take the meds, but definitely understand not wanting to. There's some recent research showing ginger and turmeric are promising for reducing inflammation. Ginger may also help with nausea, which i have from both methotrexate and Orencia. I drink a lot of (nonalcoholic) ginger beer made with real ginger, ginger tea, and have learned how to make candied ginger and ginger hard candy - maybe not the healthiest ways to get ginger but they're enjoyable. Except for eating curry, I find the turmeric harder to eat and take a supplement. Just some thoughts... 😉

I get it! I was given a brochure when I was diagnosed in 1996. I moved away from humid Houston to dry Arizona to have a more simple lifestyle, but there were other reasons, as well. So, you can know that many of us did work until retirement, and did not become bedridden, and have outlived the dire predictions of early death. Lupus self help groups might be good, but I like the MCTD Lifestyle/Integrated/Functional group on FB in addition to this one. Lots of newly diagnosed people there. However. You do need to find a way to eat since high nutrition is important for the long term, and supplements are not worth the money. AIP, Terry Wahls Protocol, Diabetes diet, and/or a non-processed diet, low sugar (high fructose corn syrup and aspartame are horrid), avoid white potatoes, whole wheat, dairy (I am okay on yogurt) and saturated fats. Basically, I have 5-10 meals that sit right and stick to those, rather than a diet. Follow the advice on webmd (google GERD triggers) for other useful advice. Hot chamomile tea after a meal is helpful. Find stretches/water exercises to relieve joint pain as movement offers the best relief. With this condition, resting is less productive than movement. If you must rest, get up hourly and move around. If you haven't exercised in awhile, find a good Physical Therapist--manual that uses yoga/pilates/isometric moves. Online, I like Dr Jo on you tube, but you have to know what body system is annoyed. Massages are also great for relief, as we have a bit of fibromyalgia and relaxing the muscles helps immensely. Movement helps motility, but I take ducolax here and there. Make sure you are sleeping well at night and that you do not have sleep apnea; I wear hand splints for good circulation at night. Sublingual B-12 helps with brain fog and pain. Do make sure you are fully hydrated--I finally bought a marked bottle to make sure i get at least 32 oz. I mix water with a bit of good quality fruit juice as electrolytes make a difference. I have been on plaquenil (now 1X day as I am older), Methotrexate injectable (old drug, low dose, lower cost) and Etodolac/Lodine for pain. I use a lot of topicals like lidocaine patches, KT Tape (you tube instructions), compression socks, etc. as needed. A pain medicine doctor prescribes Percoset for nighttime pain relief; I do okay during the day. It is a lot but over time it becomes pretty much normal. I think it really depends on taking better care of yourself than we are used to and keeping must-dos light and lifestyle simple. Many of us are overachievers, so it is a life lesson. Peace.

I have a flutter valve and do intentional breathing to help with shortness of breath. Seems to help relieve it, where inhalers do not (for me). I think percussion is helpful. There is another device where you work to keep up the balls in it, but I do not have it. I do wonder if it is long term Covid, but no evidence or testing available.

I haven’t gotten Covid so far. 🤞🤞
Inhalers don’t work for me either. I am trying to do Pranayama regularly. I also use the spirometer.Hopefully, I will see the difference.