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How do you cope with Mixed Connective Tissue Disease?
Would someone else please join this discussion and let me know how you cope with Mixed Connective Tissue Disease? How can you explain it to your family and friends when they just do not understand? How can I explain it to my doctors? Myself?
I am always tired. Extremely tired. Weak. Do not feel well.....ever. Then at various times, I have problems or flares with several different issues. I always seem to struggle with the neuropathy in my feet and or the raynauds or just swelling and pain. The GI problems are endless. Though they have talked about someday I may have to have a feeding tube, I have always fought that. But with this dismotility and Barretts, some days I actually think just do it and get it over with. I am tired of the pain and wondering what to eat, what I CAN eat.
My skin hurts. My joints hurt. And I feel like I am losing my mind some days. I hate when I feel all whiny and negative. That is not me but darn it all, I hate these illnesses.
The doctors all say to join a support group. Where and which one? Lupus? Scleroderma? Raynauds? Sjogrens? I am at a loss so turned to this site.
Any advice would be helpful. Or just knowing there is someone else out there going through the same thing and understands!
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Positive ANA. MCTD diagnosis. Disease is attacking every organ except my lungs. Heart arrhythmia. Chronic renal failure. Digestive system -dysphagia and motility. Reproductive system. And now my liver has a solid mass. Indeterminate on CT and MRI. Anyone else have this?
Hi krcc, I moved your latest message to the discussion where you were connecting with fellow members like @marye2 @sueg42 @renm @guthealth @1corinthians926 @irish283
See here:
- How do you cope with Mixed Connective Tissue Disease?: https://connect.mayoclinic.org/discussion/mctd-265a2b/
@krcc, I'm sorry to hear that MCTD is affecting so many organs and causing other conditions to deal with, such as renal failure, heart issues, digestive issues and now a solid mass on your liver. Are you scheduled for further testing to find out more about the mass?
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1 ReactionAnother MRI in 2 months. Hopefully a diagnosis next time. Thank you.
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2 ReactionsI had flare ups off and on for over 40 years. No one connected the dots until I was 56 years old. It hit me like a truck. Full body involvement. My doctor hit it hard with Plaquenil, prednisone and methotrexate. Later Cymbalta was added. Right now I’m in a flare. I spent a week with my little grandsons. Precious time with them. 💜🦋
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1 ReactionHello Everyone,
After years of many issues, I was recently diagnosed with MCTD. My labs returned with high levels of RNP antibodies.
@krcc Thank you for sharing your experience. I have been having similar symptoms and health problems. I was finally diagnosed after my bloodwork results were positive for RNP autoantibodies. The first ANA test was a false negative. My hematologist reran some labs including ANA and it was positive. So, she did further testing and I have high levels of RNP. I have been experiencing heart arrhythmia, peripheral neuropathy, terrible lumbar spine pain as well as pain/stiff joints all over. It seems to be affecting my kidneys over the last 2 years, my heart (also believed to have caused my Aortic Aneurysm which was discovered 5-6 years ago), my lungs, and entire GI tract.
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2 ReactionsI have Ehlers Danlos Syndrome and it is a collagen deficiency of all tissue but has a LOT of the same things you listed. Their support groups and sites and so many groups are invaluable to me . The international aspect of the massive network has been vital to my self care and constant learning and coping! Please check them out because the overlapping issues to your issues can only be of great use to you! I am so grateful for them over these last 20 years of managing EDS!! I never feel isolated or alone! God Bless!
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2 ReactionsHi, I am so glad to have found this support group! I was diagnosed with MCTD after a lengthy bout with Covid in January 2022. My PCP has been a godsend, when 4 months after Covid I was still having weird pain he ran an ANA panel and it showed high RNP along with scheloderma crest syndrome. So far it’s affecting my mobility. On bad days walking can be difficult, I use trekking poles instead of a cane because they keep me upright. I’m currently taking meloxicam for inflammation along with b12, folate, vitaminD. I can’t take steroids because they negatively affect my heart. Overall I’m happy to be able to move, I did retire from teaching as I was having a rough time keeping up with my preschoolers. It’s good to know I’m not alone!
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1 ReactionWelcome @bouregard3, I'm tagging fellow members like @terrirussell @krcc @marye2 @sueg42 @renm @guthealth @1corinthians926 @irish283 @1950 @jessf who have experience with MCTD (mixed connective tissue disease).
I'm sorry to hear that your diagnosis moved forward your retirement plans. Trekking poles are a good idea for stability when moving. Do you use them in the house too or only outdoors?
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1 ReactionMovement, whether it is a daily walk, water exercise or therapy, yoga, pilates or isometrics, is crucial. Water exercise, short walks and PT for stretches (I like a manual PT) are the best places to start. I do piriformis syndrome stretches for lower back pain/hip and tight hamstrings. If I go to the gym, I work on the eliptical machine, a little at a time. Treadmill is a "no."