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@bearylynn

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.

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Replies to "Sounds alot like what I struggle with. Prior to quitting work (6 yrs ago after YEARS..."

I was diagnosed with MCTD a couple months ago. Have been working in Pharma industry for over 30 years. 55. Have a lot of brain fog that makes it difficult sometimes and have a stressful job and manage 4 people. Were you able to get disability ? I’m not sure that I can totally quit workout until my adult son is more independent. He just graduated college this year but hasn’t landed a job that will pay all of his bills etc ..

Were you diagnosed with mctd then ?

How old were you when you were diagnosed and how old were you when you quit working ? I’m 55 and was just diagnosed with mctd in Sept and thinking I need to file for short term disability to start with to figure out how to heal and control this as I have a lot of brain fog. May need to apply then for longer term disability ins if things don’t improve as my brain just doesn’t work the same and not able to keep up with the workload and expectations anymore .. I think I’ve had this for years but didn’t know what it was and thought it was just depression and fatigue before