How do you cope with Mixed Connective Tissue Disease?
Would someone else please join this discussion and let me know how you cope with Mixed Connective Tissue Disease? How can you explain it to your family and friends when they just do not understand? How can I explain it to my doctors? Myself?
I am always tired. Extremely tired. Weak. Do not feel well…..ever. Then at various times, I have problems or flares with several different issues. I always seem to struggle with the neuropathy in my feet and or the raynauds or just swelling and pain. The GI problems are endless. Though they have talked about someday I may have to have a feeding tube, I have always fought that. But with this dismotility and Barretts, some days I actually think just do it and get it over with. I am tired of the pain and wondering what to eat, what I CAN eat.
My skin hurts. My joints hurt. And I feel like I am losing my mind some days. I hate when I feel all whiny and negative. That is not me but darn it all, I hate these illnesses.
The doctors all say to join a support group. Where and which one? Lupus? Scleroderma? Raynauds? Sjogrens? I am at a loss so turned to this site.
Any advice would be helpful. Or just knowing there is someone else out there going through the same thing and understands!
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I would love to help! When were you diagnosed w/ this? Did you go and see a rheumatologist for this condition? The reason I am asking is It almost sounds like Fibromyalgia? I was just diagnosed w/ this a month ago and the sympyoms are so similar? I would love to discuss this w/ you much further?
Thanks for the response Trouse.
I have had my conditions for several years. It is actually multiple autoimmune diseases that overlap. As for the fibromyalgia, they had dx me with that years ago and then lab work kept coming back for other health conditions.
My daughter, though has fibro. She struggles quite a bit with it but does not let it keep her down.
Good luck with your journey with fibro. I will be praying for you.
I’m 22 and was diagnosed at 18 with scleroderma. What you described has been exactly how I felt over the past 2 years. I am currently classified under MCTD as I’m exhibiting multiple symptoms of all AI. The way I cope is I try and stay as active as possible and as hard as it sounds I try and think about something else.. My last hospitalization due to severe dehydration and malnutrition almost landed me a feeding tube but thankfully they tried nitroglycerin which helped a bit. It’s not an easy road. Lean on friends and family if you can I know it’s hard for them to understand but I explain to them it’s like having a constant flu. Also there is a MCTD support group but I also when I was first being diagnosed found support in the scleroderma one..
Good luck and prayers
Thank you Jessica for your response. I so appreciate it.
I too suffer from malnutrition and the doctors say the feeding tube is inevitable. I am believing that I will never have to have it, but as I am writing this I am in a “cycle” as I call it when I am unable to eat and throw things up because of the esophageal motility issues. Sometimes the cycles last months, at times only weeks.
A bad flu is a great way to describe the general feeling of fatigue and just not feeling well. The pain can be extreme but depends on the day and activity.
Sorry to hear that you are going through so much at your young age. I will pray for you.
I was diagnosed in Dec with mctd. It is very hard to explain to family and friends. Everyone is very supportive, but they can’t really understand….I really don’t Understand. I also have psoiriatic arthritis and started methotrexate three weeks ago. Also vitamin b12 shots weekly..folic acid every day. So tired some days and feel like I have the flu a lot. My hands ache in the mornings.
I am sorry to hear of your dx Lynnie. It is a tough illness and what makes it even more difficult is that family and friends do NOT understand. Heck! They do not understand the lupus alone or the scleroderma but MCTD?! Not a clue.
The B12 should start helping the fatigue but the fatigue will never go away. When you really know that the B12 is working is when it is getting close to when you need to go in for your next injection or if you are late getting it. Then you realize how much you need it and that it is helping some.
I have had this illness for several years and have major ups and downs. I have never went into full remission though. It seems that one of the diseases may be calm for awhile but while it is not kicking my butt, another one of the diseases is in a major flare. You just have to work with your doctor and through trial and error, you find the best treatment for you. This may only work temporary and then you are back to the drawing board but the important thing is not to give up. I know there will be days when you feel like it but you have to draw on your inner strength (I turn to God and use HIM for my strength) and push on.
What I hate is all the crap that accompanies the different illnesses. Like the GI problems from the scleroderma. And especially the fatigue and just not feeling well. I also am thankful for this website because people do not understand and there are many times you just need to vent or have support.
Thank you for responding. You can “chat” with me any time.
I am thinking of you and will say a prayer.
Thank you cindi. I appreciate your reply. It is good to have a place like this to vent.
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:
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.
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)
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.
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.
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.
Hi, all. I’m 32 and just diagnosed with mctd about a month ago. Literally started Plaquenil about three days ago and I take Mobic every day. I am not in nearly as severe a situation as some of you , but my condition was described as still emerging. I wish you all the best and hope to learn from you who have dealt with this disease longer than I have.
Interesting to read each others stories. Anyone found a good diet to help your autoimmune fight off this disease?