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

...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.

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.

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.

I am Canadian. I have noticed that our treatments tend to be different than in the USA. Are you American? You asked me about my meds. They have changed
over the last 7 years. Right now I take teva-pregabalin, 1 Aspirin, Teva-rosuvastatin, Rosuvastatin Calcium, 1000 Mcg/Swiss Vit. B 12,1000Mcg. Act- Amlodipine Besylate, 5 MG.
More symptoms are leg weakness for awhile after I wake up
In the 🌄. Symptoms are also, eyelid twitch, heartburn like most people our age! Haha. I am almost 72.
My husband wants to check out ozone treatments in Toronto. Can't hurt.
As far as the dental connection and covid mentions, personally I think that could be going down the wrong path. Am I being too bold?😄
What is LDN?
I am so excited to meet another person experienced in the ways of Mixed Connective Tissue.
Disease.
Sincerely,
Charlotte

I feel bad for you...you have it much worse than me (for now). Exercise is recommended, but within limits... Don't overdo it. Plaquanil (hydroxychloraquine) has helped me a lot with dryness. issues, but the fatigue is harder to treat. It doesn't sound like COVID at all. Blood work should reassure you about the diagnosis. For me: sjogrens symptoms without you sjogrens antibodies, yet high rheumatoid antibodies: thus MIXED connective tissue disease. I do have some joint issues... not too bad so far. I also get lightheadedness and a lot of fatigue. They don't call it mixed or an overlap disease for nothing. Your ills are real and very difficult. Don't listen to well-meaning friends and relatives who diagnose and advise you, and frankly they don't know their ass from their elbow, especially the ones spreading vaccine and dental filling bullshit. People like that were complicit in the unnecessary deaths of hundreds of thousands from COVID. Stick with a top rheumatologist, try the meds ( I have NO side effects from plaquanil) . Get prescription fluoride toothpaste if you’re dry, and regular (every 3-6 months eye and dental exams to be on top of any side effects and prevent dryness dental decay. Biogenesis products for dry mouth and sustained eye drops help dry eye.