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

Sounds alot like what I struggle with. Prior to quitting work (6 yrs ago after YEARS of horrendous pain), I was an engineer, so it's my nature to keep looking for solutions. Some of them that I use daily are:

DIET:
NO DAIRY - causes severe joint/tendon pain
NO RAW FRUITS/VEGGIES (except maybe avacado) - gi problems
NO EGGS - cause severe colon gas/acid/spasm - suffer for days w/ little egg!
NO (VERY LOW) FIBER - Gas causes colon to spasm shut.
GLUTEN FREE - gives gi system a break when completely off for months at a time.
Along w/ gluten free, limit sweeteners to honey (cooked best for me), stevia, saccharine.
Look into book: "Breaking the Vicious Cycle" (SCD diet)
SLUSHIES - a.m. & p.m. - fresh grapefruit juice (or cranberry juice cocktail) - w/ ice, coconut (natural, unsweetened), acerola vitamin c powder, l-glutamine powder, cocoa, stevia , natural calm (already liquified), (sometimes pecans, almonds...). I LOVE this concoction. (I got some "smoothie maker bottles" to go on my standard osterizer).
COCONUT OIL and BUTTER seem to help stimulate digestion.
BAKED APPLES - w/ honey, cinnamon and a little water -- eat w/ pecans heated in a little butter.

SUPPLEMENTS:
NATURAL CALM (magnesium citrate powder) - best thing for motility I've used.
2-3 tablespoons a day (mostly at dinner)
SENNA - approx 35 mg every other day w/ dinner (yes - that's alot).
NO CALCIUM (for me - kidney stone/crystal issues)

MEDS:
DITROPAN XL (not generic) - reduces colon/bladder/ureter spasms, helping gas & stool to pass.
Other meds also - but not sure if they apply directly to the connective tissue problems.

LIFESTYLE:
YOGA - improved nutritional absorption - gained weight
ELECTRIC BLANKET - a.m. and p.m. - wrap around legs for 1-2 hours (WONDERFUL)
PHYSICAL THERAPY - finally found one who really gets the mechanics of things -- I use him as necessary.
CHIROPRACTOR - found a wonderful guy associated with a comprehensive "Spine Care" program. He's the only one I've ever used who did anything worthwhile -- I use him as necessary, but if I keep doing the right exercises, don't need him.

I've found various exercises that help - between reading books and p.t. help.
Inversion Table: I use it to allow gravity to move my intestines upward -- relieving the pressure down low seems to help w/ constipation.

DOCTORS:
GI - 8th gi doc I tried is great. She has independent practice and understands functionality better than most -- but, hard to find someone like this. Hard for these docs to stay independent of the big companies -- she's closing shop this summer.
HAND SURGEON - Also found a great one - after problems w/ first hand surgery. He's fixed me up, and just finished my latest hand surgery. He, also, is leaving the big hospital company, and I will no longer be able to use him -- hard to find the ones who still want to - and are allowed to - do things how they know are best.
PHYSIATRIST / PAIN DR.. - Found a good one through a disability attorney. Extremely valuable in referring me to helpful specialists.
PSYCHIATRIST - ask around for someone others really like. I take depression meds -- spent too many days working too hard just to attempt to 'climb out of the hole' over and over.
PSYCHOTHERAPIST- finally found a good one. Was most helpful in helping ME to understand that I was not just lazy and whiney!

Do not misunderstand -- pain / constipation / pain / infections / ........... are still a daily struggle, but without constantly working on above issues, I would be on the floor all day w/ pain at 9-10.

Support groups could be great - but only if folks are discussing solutions rather than problems. There are lots of great ideas, and we only figure out if they work for us through trial and error -- and, yes, it's a full-time job.

Sounds alot like what I struggle with. Prior to quitting work (6 yrs ago after YEARS of horrendous pain), I was an engineer, so it's my nature to keep looking for solutions. Some of them that I use daily are:

DIET:
NO DAIRY - causes severe joint/tendon pain
NO RAW FRUITS/VEGGIES (except maybe avacado) - gi problems
NO EGGS - cause severe colon gas/acid/spasm - suffer for days w/ little egg!
NO (VERY LOW) FIBER - Gas causes colon to spasm shut.
GLUTEN FREE - gives gi system a break when completely off for months at a time.
Along w/ gluten free, limit sweeteners to honey (cooked best for me), stevia, saccharine.
Look into book: "Breaking the Vicious Cycle" (SCD diet)
SLUSHIES - a.m. & p.m. - fresh grapefruit juice (or cranberry juice cocktail) - w/ ice, coconut (natural, unsweetened), acerola vitamin c powder, l-glutamine powder, cocoa, stevia , natural calm (already liquified), (sometimes pecans, almonds...). I LOVE this concoction. (I got some "smoothie maker bottles" to go on my standard osterizer).
COCONUT OIL and BUTTER seem to help stimulate digestion.
BAKED APPLES - w/ honey, cinnamon and a little water -- eat w/ pecans heated in a little butter.

SUPPLEMENTS:
NATURAL CALM (magnesium citrate powder) - best thing for motility I've used.
2-3 tablespoons a day (mostly at dinner)
SENNA - approx 35 mg every other day w/ dinner (yes - that's alot).
NO CALCIUM (for me - kidney stone/crystal issues)

MEDS:
DITROPAN XL (not generic) - reduces colon/bladder/ureter spasms, helping gas & stool to pass.
Other meds also - but not sure if they apply directly to the connective tissue problems.

LIFESTYLE:
YOGA - improved nutritional absorption - gained weight
ELECTRIC BLANKET - a.m. and p.m. - wrap around legs for 1-2 hours (WONDERFUL)
PHYSICAL THERAPY - finally found one who really gets the mechanics of things -- I use him as necessary.
CHIROPRACTOR - found a wonderful guy associated with a comprehensive "Spine Care" program. He's the only one I've ever used who did anything worthwhile -- I use him as necessary, but if I keep doing the right exercises, don't need him.

I've found various exercises that help - between reading books and p.t. help.
Inversion Table: I use it to allow gravity to move my intestines upward -- relieving the pressure down low seems to help w/ constipation.

DOCTORS:
GI - 8th gi doc I tried is great. She has independent practice and understands functionality better than most -- but, hard to find someone like this. Hard for these docs to stay independent of the big companies -- she's closing shop this summer.
HAND SURGEON - Also found a great one - after problems w/ first hand surgery. He's fixed me up, and just finished my latest hand surgery. He, also, is leaving the big hospital company, and I will no longer be able to use him -- hard to find the ones who still want to - and are allowed to - do things how they know are best.
PHYSIATRIST / PAIN DR.. - Found a good one through a disability attorney. Extremely valuable in referring me to helpful specialists.
PSYCHIATRIST - ask around for someone others really like. I take depression meds -- spent too many days working too hard just to attempt to 'climb out of the hole' over and over.
PSYCHOTHERAPIST- finally found a good one. Was most helpful in helping ME to understand that I was not just lazy and whiney!

Do not misunderstand -- pain / constipation / pain / infections / ........... are still a daily struggle, but without constantly working on above issues, I would be on the floor all day w/ pain at 9-10.

Support groups could be great - but only if folks are discussing solutions rather than problems. There are lots of great ideas, and we only figure out if they work for us through trial and error -- and, yes, it's a full-time job.

Hello. I am nearing an official diagnosis. I’ve tested positive for MCTD twice and have a laundry list of symptoms spanning the last 30 years and they are increasing in frequency and intensity. I received my brain MRI results last week with some troubling news. I have Mesial Lobe Sclerosis (but I don’t have high BP, high cholesterol or diabetes and I don’t have epilepsy) and Microvasular Ischemia. Do any of you have those impacts in your brain? If so, how are you being treated to slow the effects down?

I also have two parotid gland tumors. Has anyone dealt with that? Thank you so much for your input. I appreciate it.

I appreciate your response. I can't deny that I believe i have a very healthy dose unfortunately... same as my gma and dad. Since my first presentation like 10 months ago I personally can not deny that I have: lupus, scleroderma, RA, myositis...... and i know Sjogrrns csn have overlapping symptoms ... my gma had it and they were my first symptoms so I may as well include that as well... I have a medical background that has helped me greatly in trying to tease this all apart that I am grateful for. It sounds very uncommon to break through a flare without meds. It has been alot of work and adjusting... everything from eating a high dose of cocoa and high polyphenol olive oil to the resolute use of eating chicken to avoid face and nose sores from breaking through.... along with supplements, a very good diet, exercise and sleep. I have a terrible sensitivity to lectins so struggle getting grains that I believe assist in energy production. I have tried soaking and pressure cooking. Im still working so I'm dealing but feel underaccomplished. Sorry - talking your ear off

I appreciate your response. I can't deny that I believe i have a very healthy dose unfortunately... same as my gma and dad. Since my first presentation like 10 months ago I personally can not deny that I have: lupus, scleroderma, RA, myositis...... and i know Sjogrrns csn have overlapping symptoms ... my gma had it and they were my first symptoms so I may as well include that as well... I have a medical background that has helped me greatly in trying to tease this all apart that I am grateful for. It sounds very uncommon to break through a flare without meds. It has been alot of work and adjusting... everything from eating a high dose of cocoa and high polyphenol olive oil to the resolute use of eating chicken to avoid face and nose sores from breaking through.... along with supplements, a very good diet, exercise and sleep. I have a terrible sensitivity to lectins so struggle getting grains that I believe assist in energy production. I have tried soaking and pressure cooking. Im still working so I'm dealing but feel underaccomplished. Sorry - talking your ear off

How did you get them to give you an MRI? I’ve been asking for one but they haven’t yet felt the need to do one. I was diagnosed with mctd in Sept but have been having brain fog and fatigue for years now and Ive been on hormone replacement therapy so I don’t think it’s related to perimenopause,

How did you get them to give you an MRI? I’ve been asking for one but they haven’t yet felt the need to do one. I was diagnosed with mctd in Sept but have been having brain fog and fatigue for years now and Ive been on hormone replacement therapy so I don’t think it’s related to perimenopause,

@syltejr if you are living in Canada, it is difficult to get an MRI because you always need a doctor’s - often a specialist’s - referral and even then it is difficult to get one because our government health plan won’t pay for one unless it is ordered as a last resort. I have been asking doctors for one for years without success. The most they will do is a CT scan but only if an Ultrasound proves inconclusive.