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

What 43 years of MCTD has given me and I'm still smilingI am not posting this for sympathy or pity. I am letting you know that we can survive most things that it throws at us and come out smiling, if we choose to. This has been my life since I was in my 20's.Mixed Connective Tissue Disease withSystemic Scleroderma - Pain, fatigueSLE Lupus - Pain, fatigueRaynaud’s phenomenon - Pain when coldSjrogren’s Syndrome - Joint pain, fatiguePolymyositis - Muscle damageFibromyalgia - Musculoskeletal pain, fatigue, plus sleep,memory and mood disordersGERDS - Extreme heartburn, acid reflux, abdominalor chest painLichen planus - Itchy skin and painful sores in the mouthBursitis - Joint painTendonitis - Pain, tenderness and mild swellingPericarditis - Pain (like a heart attack), weaknessRheumatoid Arthritis - Mild- Joint stiffness, tenderness andswellingOsteoarthritis Mild - Joint pain and stiffness with movement,bone spursMeniere’s - Vertigo, tinnitus, moderate hearing lossboth ears, 2 hearing aidsSleep apnea – CPAP machinePeripheral Neuropathy - Sharp pains anywhere, anytimeIncontinence - Absolutely no controlHyperhidrosis of the head and excessive body heatHeart - Arterial sclerosis, Angina andHypertensionCheck for Autonomic Neuropathy - Suggested but not confirmedNow that's just the big stuff, I have had 13 surgeries and waiting for a 14th for my 3rd Thoracic Hiatal Hernia in the same spot. Too many MRI, CT, X-Ray, Endoscopy, Colonoscopy, etc. to mention. AND I AM STILL HERE AND SMILING, because I choose to. Your life is what you make it. If you are unhappy at home or work, fix it. If you want your life to be different, change it. You get my point. I chose to look past the diseases and pain and to live my life anyway. You can too. You can cry, shout, hit something, whatever you need to do to get the frustration out but always end up with a smile. You would be amazed at how it changes your life. Good luck and keep smiling.PS: If anyone want to ask questions about any of these diseases just ask.

Thank you for your post mctd43years! I got diagnosed in my forties but symptoms appeared in my mid twenties. I found that talking to other people about my symptoms helped tremendously and also helped me find some really amazing specialists! You may never know who else has same symptoms as you.
My friends always say that I am the right person to get MCTD because no matter what is dealt to me, I keep going and smiling through it all. But sometimes it’s hard and that’s why I appreciated your post. I needed a reminder to keep smiling because lately I have been crying and yelling to God for my constant upper respiratory infections. I am tired though of being sick for so long. Thank you for helping me realize that there are people out there with more issues than mine. 🙏🙏

Dear Dee5, I totally understand where you are coming from. It would be so easy to just give up. But we are fighters and have great determination to move on and appreciate life. I hope you get better soon. Keep smiling.

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.

What 43 years of MCTD has given me and I'm still smilingI am not posting this for sympathy or pity. I am letting you know that we can survive most things that it throws at us and come out smiling, if we choose to. This has been my life since I was in my 20's.Mixed Connective Tissue Disease withSystemic Scleroderma - Pain, fatigueSLE Lupus - Pain, fatigueRaynaud’s phenomenon - Pain when coldSjrogren’s Syndrome - Joint pain, fatiguePolymyositis - Muscle damageFibromyalgia - Musculoskeletal pain, fatigue, plus sleep,memory and mood disordersGERDS - Extreme heartburn, acid reflux, abdominalor chest painLichen planus - Itchy skin and painful sores in the mouthBursitis - Joint painTendonitis - Pain, tenderness and mild swellingPericarditis - Pain (like a heart attack), weaknessRheumatoid Arthritis - Mild- Joint stiffness, tenderness andswellingOsteoarthritis Mild - Joint pain and stiffness with movement,bone spursMeniere’s - Vertigo, tinnitus, moderate hearing lossboth ears, 2 hearing aidsSleep apnea – CPAP machinePeripheral Neuropathy - Sharp pains anywhere, anytimeIncontinence - Absolutely no controlHyperhidrosis of the head and excessive body heatHeart - Arterial sclerosis, Angina andHypertensionCheck for Autonomic Neuropathy - Suggested but not confirmedNow that's just the big stuff, I have had 13 surgeries and waiting for a 14th for my 3rd Thoracic Hiatal Hernia in the same spot. Too many MRI, CT, X-Ray, Endoscopy, Colonoscopy, etc. to mention. AND I AM STILL HERE AND SMILING, because I choose to. Your life is what you make it. If you are unhappy at home or work, fix it. If you want your life to be different, change it. You get my point. I chose to look past the diseases and pain and to live my life anyway. You can too. You can cry, shout, hit something, whatever you need to do to get the frustration out but always end up with a smile. You would be amazed at how it changes your life. Good luck and keep smiling.PS: If anyone want to ask questions about any of these diseases just ask.

Looking to chat comparatively on mctd

Good morning, I am coming up on my 8 year anniversary of being diagnosed with MC. T. D , good and bad days, you just have to take it day-by-day.

Looking to chat comparatively on mctd

@believe1 and @kleffew, I moved your posts to this discussion:

- How do you cope with Mixed Connective Tissue Disease? https://connect.mayoclinic.org/discussion/mctd-265a2b/

I did this to help connect you with other members living with mixed connective tissue disease (MCTD) like @callieb1102 @gdcm @mctd43years @dee5 @cindia1 @erikab @marye2 @bouregard3 @margar1 and many others.

See all MTCD discussions: https://connect.mayoclinic.org/group/autoimmune-diseases/?search=MCTD#discussion-listview

@believe1, is this a new diagnosis for you? What helps you manage the emotional side of living with MCTD?