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

Diagnosed with MCTD several years ago after PCP finally ordered those ANA Titer tests etc . Rhematologist put me on hydroxychloriquine but it made me nauseous .now I’m willing to try anything. Constant and severe flu is what i feel now. Reynauds is the least of my problem . Sjogrens - sinuses etc not fun .The term “Flare up” suggests occasional relief . But no . After a Tooth extraction i seemed to get worse and worse. Now I have another infected tooth that needs to be removed but I feel so weak - not sure if I should. Go under anaestheia and undergo the violence of that surgery again .
Tri-geminal nerve was possibly damaged some years ago with dental work.
My rheumatologist said my PCP should send me to Stanford for rheumatology cuz they can consult with neurologists etc . Stanford wont have me cuz they are “impacted” and they dont give second opinions anyway. So now I’m left with no one .
Just you guys

Diagnosed with MCTD several years ago after PCP finally ordered those ANA Titer tests etc . Rhematologist put me on hydroxychloriquine but it made me nauseous .now I’m willing to try anything. Constant and severe flu is what i feel now. Reynauds is the least of my problem . Sjogrens - sinuses etc not fun .The term “Flare up” suggests occasional relief . But no . After a Tooth extraction i seemed to get worse and worse. Now I have another infected tooth that needs to be removed but I feel so weak - not sure if I should. Go under anaestheia and undergo the violence of that surgery again .
Tri-geminal nerve was possibly damaged some years ago with dental work.
My rheumatologist said my PCP should send me to Stanford for rheumatology cuz they can consult with neurologists etc . Stanford wont have me cuz they are “impacted” and they dont give second opinions anyway. So now I’m left with no one .
Just you guys

As a fellow sufferer from MCTD, you have my condolences. It's a rare condition that none of my friends, family or acquaintances have ever heard of. I was diagnosed 7 years ago. Since then, there has not been much medical support except for being prescribed pregablan. I also suffer from facial neuropathy. So, how do I cope? Not that well. There appear to be few treatments available. Any thoughts?

...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 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.

Oh my. What are your symptoms? I am not familiar with that med. Do you have any family members who suffer (ed)?
It took me forever to grasp that there is no cure, only symptom mgmt. My sister told me it's your root canals or metal in the mouth or your flu vaccines (I was teaching adult ed-second career ) or this or that . So I kept trying to fix the cause - to no avail. I even did several months of TMS, which might have set my mouth off too.
My worst symptoms are Big profound fatigue, dizzy, weakness, feeling faint. This is constant. You?
I walk with trekking poles, mostly up and down the parking lot -just to move and look at the sky. Several fingers are swollen and red and hurt sometimes. Sides of toenails are painful from time to time Above the neck is dry mouth, aching teeth and weird upper palate raw feeling, dry eye, swollen eyes, eyelid twitch, runny nose, blocked right ear off and on. I have freezing hands and feet but I don't mind cuz that has a solution- electric heating pad. Every day round noon my feet and hands get freezing and I feel horribly sick that tells me its time go to bed and try to nap for a hour, even though I might have gotten 9 hours sleep the night before.
I have also had weird symptoms that last a few months or weeks and then go away- like severe right hip pain, painful underarm lymph nodes, burning pain in the ball of my foot, pain in my side, heartburn. One night 4 years ago there was such severe pain in part of my skull I almost went to the ER. But it lasted 5 or 6 hours only. But I'll never forget that night. I had a month of non-stop bloody eyeballs - one after the other - in my left eye. Eye doc mumbled something about giant cell arteritis. I am now 74 but I had been doing hot yoga for 20 years and walking 10 miles a day. I was NOT a hypochondriac. My yoga leg muscle memory for balance has probably saved me from a fall over and over this past year. My life has cratered and I don't know what I did wrong.
I have stiffness in my back etc but I wouldn't call it bad - and because I don't have big muscle pain, doctors tend to dismiss me. Call me depressed, etc. Well hell ya, you would be too ! I might rather have pain that responds to meds, rather than constantly feeling like I am going to throw up, have my legs give out from under me, and pass out or just crumple in sleep.
I had COVID for the first time end of 2023. You? A tiny short lived cough and slept for several days is all. My fatigue and malaise symptoms started in 2017 pre-Covid - They are much worse now. Worse since 2 oral surgeries.
So is it long Covid? EBV virus reactivation?, auto immune? metal poisoning , chronic infection somewhere? vaccine reaction? Genetics? All or some of the above?
So LDN for now - it might be helping mouth pain, but I am more dizzy and faint. I was on Gabapentin low dose and it helped my mouth. But then dizzy and fatigue began to worsen. Not adverse to prednisone or back on Plaquenil if it comes to that which it prolly will. Just doing the LDN for now, because I am pretty sensitive to medication it appears. Want to try ozone treatment IV and Vitamin C IV if I can afford it. (Insurance doesn't cover). Has anyone tried this?
Pardon this diatribe. But I am truly curious if we have any symptom overlap. I know manifestation can be quite different in each body, but somehow it provides comfort knowing I am not totally alone in feeling so dreadful like this.

Oh my. What are your symptoms? I am not familiar with that med. Do you have any family members who suffer (ed)?
It took me forever to grasp that there is no cure, only symptom mgmt. My sister told me it's your root canals or metal in the mouth or your flu vaccines (I was teaching adult ed-second career ) or this or that . So I kept trying to fix the cause - to no avail. I even did several months of TMS, which might have set my mouth off too.
My worst symptoms are Big profound fatigue, dizzy, weakness, feeling faint. This is constant. You?
I walk with trekking poles, mostly up and down the parking lot -just to move and look at the sky. Several fingers are swollen and red and hurt sometimes. Sides of toenails are painful from time to time Above the neck is dry mouth, aching teeth and weird upper palate raw feeling, dry eye, swollen eyes, eyelid twitch, runny nose, blocked right ear off and on. I have freezing hands and feet but I don't mind cuz that has a solution- electric heating pad. Every day round noon my feet and hands get freezing and I feel horribly sick that tells me its time go to bed and try to nap for a hour, even though I might have gotten 9 hours sleep the night before.
I have also had weird symptoms that last a few months or weeks and then go away- like severe right hip pain, painful underarm lymph nodes, burning pain in the ball of my foot, pain in my side, heartburn. One night 4 years ago there was such severe pain in part of my skull I almost went to the ER. But it lasted 5 or 6 hours only. But I'll never forget that night. I had a month of non-stop bloody eyeballs - one after the other - in my left eye. Eye doc mumbled something about giant cell arteritis. I am now 74 but I had been doing hot yoga for 20 years and walking 10 miles a day. I was NOT a hypochondriac. My yoga leg muscle memory for balance has probably saved me from a fall over and over this past year. My life has cratered and I don't know what I did wrong.
I have stiffness in my back etc but I wouldn't call it bad - and because I don't have big muscle pain, doctors tend to dismiss me. Call me depressed, etc. Well hell ya, you would be too ! I might rather have pain that responds to meds, rather than constantly feeling like I am going to throw up, have my legs give out from under me, and pass out or just crumple in sleep.
I had COVID for the first time end of 2023. You? A tiny short lived cough and slept for several days is all. My fatigue and malaise symptoms started in 2017 pre-Covid - They are much worse now. Worse since 2 oral surgeries.
So is it long Covid? EBV virus reactivation?, auto immune? metal poisoning , chronic infection somewhere? vaccine reaction? Genetics? All or some of the above?
So LDN for now - it might be helping mouth pain, but I am more dizzy and faint. I was on Gabapentin low dose and it helped my mouth. But then dizzy and fatigue began to worsen. Not adverse to prednisone or back on Plaquenil if it comes to that which it prolly will. Just doing the LDN for now, because I am pretty sensitive to medication it appears. Want to try ozone treatment IV and Vitamin C IV if I can afford it. (Insurance doesn't cover). Has anyone tried this?
Pardon this diatribe. But I am truly curious if we have any symptom overlap. I know manifestation can be quite different in each body, but somehow it provides comfort knowing I am not totally alone in feeling so dreadful like this.