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

Posted by Cindi A @cindia1, Feb 5, 2013

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!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

vjdembro | @vjdembro | 5 days ago

My Rheumatologist prescribed Hydroxychloriquin for MCTD (now diagnosed as undifferentiated connective tissue disease)
I am on day 3 of themed and experiencing really bad diarrhea for 3 days. Anyone else have this issue?

dorita7251951 | @dorita7251951 | 4 days ago

In reply to @vjdembro "My Rheumatologist prescribed Hydroxychloriquin for MCTD (now diagnosed as undifferentiated connective tissue disease) I am on..." + (show)

No but I have been Hydroxychloriquin since 1995.
At first my diagnosis was lupus and Sjögren. I was put on Methotrexate and Hydroxychoriqiun and some times prednisone.
Now diagnose is undifferentiated connective tissue disorder and Fibromyalgia. Extreme fatigue, dry eyes and mouth.
Forgive my incorrect spelling…

vjdembro | @vjdembro | 4 days ago

In reply to @dorita7251951 "No but I have been Hydroxychloriquin since 1995. At first my diagnosis was lupus and Sjögren...." + (show)

Thank you for your reply! Do u remember having side effects to hydroxychlotiquin? ?
What meds are u on now?

dorita7251951 | @dorita7251951 | 4 days ago

I still don’t have any side effects, but I really don’t know that it helps me. The doctor took me off the methotrexate a few years ago. I have good days and then the bad days also. I use eye drops for dry eyes. I also have macular degeneration. I think the RA flare ups is something you just learn to live with it. I hate being fatigued! My doctor that I really liked moved home to Iowa to raise her children. I probably didn’t tell you anything that would really help except to let you know you are not alone! Let us know if you find something that really helps you!!!

barbfe | @barbfe | 4 days ago

Hi- I've had lupus, fibromyalgia and reynauds for 48 years. I've had many critical times and about 20 years of remission at one point. I do all homeopathic, Asian medicine and naturopathic - I was at the Mayo Clinic in 1994, and they told me to use alternative methods as the drugs would eventually cause more damage. I have been doing alternative medicine for over 20 years, and this is the best I've felt. I use beet root powder for the reynauds, and it works extremely well - 2 tablespoons twice a day. I use turmeric and a blended formula for the joint pain - I still use ibuprofen during the winter at different times as the cold really bothers me. I exercise 2 hours a day - I walk for one hour, use stretch bands and yoga for the second hour - it took me awhile to build up to this, but I feel so good doing this - it keeps me moving with very little joint pain. If you want more information, feel free to contact me as I have a complete regimen that I take daily.

vjdembro | @vjdembro | 3 days ago

I try to walk 8000-14,000 steps a day spread throughout the day. Keeps me sane. Outside I have to use walking sticks for balance and I never leave the condo property for fear of falling.
I’m lucky I don’t have bad joint pain .
But the fatigue and dizzy and malaise is horrible. I’m tempted to try prednisone but I’m scared too .
Dry eyedrops help. (Get the ones without preservatives dr said). And xylitol mouth rinse and gum. I take homeopathic nerve pain sublingual for nerve pain : tooth and palate discomfort and any other weird pain sensations in the body .
Thank you for being here .
Keep me posted .

Joanne Narna | @mothermary1 | 1 day ago

If you have hypothyroidism,Raynauds and they think they may add this to my list but I’m gaining weight for no reason. My tsh has gone up so med change just recently. I suffer severe colon motility issues. I’ve been diagnosed with gastroparesis by one doctor and another said no.
I had the nuclear test that you eat a meal they give you and my stomach, small and large intestine emptied fine. Then 8 months later with a different gastro doc I was having severe stomach issues so she ordered the smart pill study where you swallow this very large capsule that takes data as it digests and I failed terribly. So who knows now. Which result should I go by. So disappointing.

char8972 | @char8972 | 14 hours ago

You are not alone! After 3 failed ankle fusions my ortho suggested genetic testing, esp since I'm adopted. I was diagnosed with Erles Danlos Syndrome (connective tissue disorder) and have the MTFKR gene mutation. I was also diagnosed with RA, Sjorgens, Fibro and peripheral neuropathy from chemo. It's an exhausting challenge to manage all these overlapping symptoms. I have a terrific therapist who keeps me sane and puts things in perspective for me. I keep a positive outlook and laughter is always the best medicine. After beating St4 Lymphoma, I'm blessed to be just be here. Learn to slow down, do a few chores and rest. Run a few errands, come home and rest. Learn to advocate for yourself with your Drs. Insist on testing, alternative treatments and make sure your Dr is really listening to you. It will take time but you will find a new normal. I won't lie, it sucks! I hate the fact that I am disabled and will never be a commercial chef again. I'm grieving the loss of my career and I'm filing for disability. I pray you find some answers🙏🏼❣️🙏🏼

char8972 | @char8972 | 13 hours ago

In reply to @wofmaria "Thanks for the information. I have had mild symptoms of something going on for years. The..." + (show)

@wofmaria

Thanks for the information. I have had mild symptoms of something going on for years. The first doctor told me it was all in my head. Ten years ago my mother was murdered in her home. At the same time my eldest was deployed to Iraq as a Marine. My youngest was in his senior year of high school. Hence, the stress set off a chain reaction in my body. My thyroid crashed and I gained 40 pounds within a couple of months. They finally got it regulated, but nothing I did could get the weight back off. About 6-7 years ago I went to the ER one night thinking I was having a heart attack. It turned out to be pericarditis. I spent 2 days in the hospital while they pulled fluid off my heart. I wasn't allowed to go back to work until the next week. Testing was done to decide why I got it and I was diagnosed with autoimmune disease. I tested positive for lupus and RA. I was started on medication, but they still weren't sure which autoimmune disease I had. Following tests were negative. Was it a false positive or are they negative because I'm now on meds. They got the pericarditis under control and added a heart specialist and a rheumatologist to my regime. A year later the pericarditis returned even stronger. The two doctors disagreed on my treatment, but finally my meds were adjusted and the pericarditis was brought under control. About 18 months after that I developed Raynaud's phenomenon. So a dermatologist was added as well as one medicine adjusted. It was brought under control. My heart specialist was able to help me lose the weight and I was able to get back in the gym. Everything started going well. Then I started having back issues and got back injections. About this time I switched rhuematologist and was diagnosed with MCTD. I did not understand until recently that it was my disease. The way he explained it I thought it was just an umbrella to say I have an autoimmune disease but they can't pin point which one. Then I tore the labrum in my hip and they did surgery to repair it. It was never the same and I kept deteriorating. In 2017 I had a L2 to S1 spinal fusion. My hip kept hurting badly and giving me issues. The arthritis in it grew immensely in one year and I had to have a hip replacement on May 29 of this year. It was fabulous and the pain was gone. 10 days into it, it literally ruptured. The doctor showed us the x-ray and said they've never seen anything like it as I literally lost my entire socket. They had to put in a cage to give me an entire new socket. They still can't figure out why it happened. A bone density test was perfect. Most agree it has to be something with my autoimmune disease. After this I once again have switched rhuematologist. That way most of my doctors are in the same network. I like this lady as she explains thing to me and now I understand that MCTD is my diagnosis. She added another medication to try to settle my system down and help with the nephropathy that I have from this fracture. The digestive disease specialist cannot get my stomach, etc. to settle down. There are days I feel pretty good and then days I'm just exhausted and ache in various places. I've been doing a lot of reading, but it's still hard to understand as it seems to be affecting everyone differently. I was wondering about diet. I used to do Atkins, and it works, but I just don't have the willpower anymore to maintain that. I just joined weight watchers, but not sure about it either. Are there certain foods that trigger issues? Are there things to eat that help? I take a couple of supplements and I have a string of meds. I used to be an outdoor person. My son and I usually go camping and hiking every summer, but I haven't been able to go for the last 3 years. I want my life back. I want to finish well, not be the little old lady sitting in the recliner crocheting all the time.

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I switched to a holistic diet when I was diagnosed with cancer. I don't eat processed foods, fast food or food with hidden sugars etc. I eat fresh fruits and vegs, esp dark berries and spinach, nuts, seeds, eggs, avacodos, fish, chicken and steak. I've added turmeric with blk pepper, ginger and garlic as they are anti inflammatories. I eat whole grains, homemade bread, olive oil, real butter, Greek yogurt, fruit and veg smoothies. I learned as a chef to KISS I keep it simple and try to cook with 6 main ingredients. I've tried to cheat and it kills my stomach and isn't worth it. I also pickle and preserve foods. I truly believe that Food is Health!❣️

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