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How do you cope with Mixed Connective Tissue Disease (MCTD)?
Autoimmune Diseases | Last Active: 4 days ago | Replies (140)Comment receiving replies
...update....got a rheumatologist! yay! and she ordered more tests. so far the few tests I have seem to show abnormal levels but not super out of range. Tell that to my symptoms! lol. Sjogens though she thinks.
My PCP has me on LDN . In 2 more months I will see if there is any diff. otherwise, prolly back on Hydroxychloriquine per Rheumatologist.
I try to walk at least 8000 - 10,000 steps a day. Last week on one day, I did 16,000! I just wanted to accomplish SOMEthing like my old competitive self. But cratered these last 2 days. I feel so much better when I am moving, I do not want to stop. Does one have to pay for a little exertion? I am talking about just WALKing and spread throughout the day. No heavy breathing etc.
Replies to "...update....got a rheumatologist! yay! and she ordered more tests. so far the few tests I have..."
I was diagnosed with CTD 5-6 years ago by my gastroenterologist but not by my rheumatologist. My symptoms from GAVE, anemia, and pulmonary fibrosis has my specialists somewhat uncertain how to treat me. So I carry on my life without added medications. I suffer from fatigue, chronic cough, loss of taste, and nasal drip but I manage them. Medication such as prednisone has been mentioned but thank you but no thank you.
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Your rheumatologist sounds on the ball. You don’t have to have crazy high antibodies to have high symptoms. Mild to moderate exercise is good,BUT- don’t overdo it. I find the hardest things for people to understand is the difference between tiredness and fatigue (the car isn’t LOW on gas: there is NO gas, it’s incurable but treatable, and that it’s your immune system being Overreactive and attacking your own body for no definitively known reason. Don’t let anyone fill your ears with health nut or conspiracy theory bullshit. Best of luck. Contact me if you wish to.