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

Wow! I am completely amazed that you are still smiling after all you have been through. You are quite an inspiration ✨️ 🫶🙌

Hello I have had MCTD for 17 year a rollercoaster of health issues and drs before I was diagnosed after 5 years. After 12 years of working in healthcare with pneumonia patients everyday I developed a bad cough tired . I had atypical pneumonia drs said no fever clear lung sounds horrible cough took a z pack for pneumonia ended up with a colon bleed in the hospital was very sick weak and they gave me a colonoscopy all I guess was clear was discharged and so sick everything i ate hurt my stomach my GI dr said should be able to eat regular foods and be fine but i wasn’t and after GI bleed that opened pandora’s box to plethora of issues I had candida or thrush from antibiotics needed treatment of special compound my Ent had pharmacy mix. and special diet that was hard because I kept getting low blood sugar and could not have carbs or sugar bc the thrush would grow. I was weak basically bed ridden for 3 months because lost so much weight was not absorbing nutrients what doctors do not address is nutrition they do not address allergies. And food sensitivities, I went to about five G.I. visits not one time did the doctor address allergy test testing for the gut but my ENT did turned out. I had a soy dairy wheat allergy did not know that and then I had sensitivity testing through a functional medicine doctor, and we found that I had issues with caesin eggs almonds, and a few other foods issues. See you could be eating healthy foods but they may not be right for your body! Every body is different but the one size fits all drive through approach does not work! I also made a lot of bone broth and still do because it helps the immune system and connective tissue from scratch. Lots of beets parsnips turnips mashed with olive oil steamed carrots roots vegetables, zucchini etc. That’s basically what my diet was. I didn’t use box bone broth I did not eat traditional breakfast anymore. Hormone free turkey burgers are on breakfast menu lol That was a very difficult meal because it had all the gluten and dairy triggers are causing me to get very sick. It took a while to rebuild my gut, but definitely find out what your allergies are through blood test and also food sensitivities are huge doctors need to get educated in this 70 to 80% of our immune system is in our Gut, I prayed a lot my faith helped for sure. I had to stop working as a healthcare professional. That was very difficult because I love my job. My focus was to just get better every day because I have kids to take care of. They are grown now the inflammation of my body has settled down immensely because I do not eat tomatoes, potatoes, eggplant, nightshade vegetables. Those also increase cytokinin production in the body which triggers inflammation, my hands, actually used to turn red in my knuckles. It took me a while years to rebuild my immune system through my gut and hormones to change things. Also also make sure that all my meats did not have any antibiotics or hormones in it. stay away from the pesticides and have organic fruits and vegetables, but again check to see with those food, sensitivities and allergy testing first we’ll keep praying for the mixed connective tissue disease for more information and answers. It took me over five years in so many doctors I bounced from New York to Boston. My nutritionist helped me most he put me on and ultrainflamix shake to rebhuild gut and whole foods every few hours small meals sweet potatoes that was my only carb for awhile….no butters lil olive oil functional dr like a mark hyman there is the wellness center in lenox Massachusetts that dr hyman founded they later hired the dr hyman at Cleveland clinic so there is a place for functional medicine in western medicine They couldn’t figure out my array of stomach issues weakness off balance for like 5 years after tears if mris blood tests ct scans ent endocrinologist neurologist but finally did through the right rheumatologist. I hope this helps some people it’s not a magic wand for anyone but my doctors are amazed at my progress when i visit rheumatology, I’m actually not on any medication at all except for vitamins that’s another thing. I do take vitamin D and b12 I was low on that I could not take the high doses of d to get my levels up in the softgels had soy in them gotta read even the RX ingredients because the body wants to attack everything. We did do elimination diet with nutritionist gradually brought foods in but not the foods sensitive or allergic to also even gf items processed and dairy free items processed would stick to whole foods for awhile let gut repair also there is talk about probiotics i like the lactobacillis better acidophilus hurt the acid in my stomach. For women the menstrual cycle adds another layer eat iron rich foods during it get your rest and week before support your progesterone by eating healthy carbs sweet potatoes stay away from inflammatory sugary food eat fruits like organic berries great, that not allergic to or sensitive. I moved lil everyday day even for 15 min while was at sickest point now i walk 2-3 miles a day its been 17 years I also swim in salt water pools great for joints but get weight off if joints bother you no fried foods processed stay away from anything for awhile thats not whole foods is my go to . also as far as exercise the MELT method great rolling for hands feet body for helping connective tissue stretching everyday but keep the faith stop trying to explain everything to everyone they’re not gonna understand the doctors barely understand lol we don’t have to prove our illness just because they can’t see it. I’ve gone through a lot with medical professionals telling me I looked fine and family members and friends that didn’t understand the illness and that’s OK. It’s not for us to prove the proof is in the blood work and the suffering we endure, but we can forgive and begin healing. I hope this helps someone out there.

@lynniepenny I really relate when I read "feel like I have the flu a lot"!! Because that's how I've described myself for the past 30 years. I became ill when I was 30. After all this time I found a supportive rheumatologist. He doesn't question me, he listens. Until now my doctors couldn't understand what kind of pain I was in. Always insinuating it was "all in my head." I also have rheumatoid arthritis and this seemed to give me some "cred"! Because something about MCTD is hard for people to understand. My life is about becoming informed by my illness(es) but they do not define me. We are always much more than a diagnosis.

@char8972 Your post made my day! I could feel the strength you've gained by having a positive attitude even with all that illness..with grief and disability. I agree with everything you write about pacing activities. I agree with having a good therapist, and laughter IS the best medicine. I haven't had genetic testing but appear to have something on the spectrum of EDS. I live with RA, Sjogrens, Fibro and radiation damage to my right head, neck and upper back because of treatments for a parotid gland tumor. If illness is chronic and not going away, the only way to cope is to begin to creatively change your life. Well, wishing you the best! I hope others take your advice to heart.