How do you cope with Mixed Connective Tissue Disease?

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 group.

@irish283

Hello, I’m researching mixed connective tissue disease for my husband. I am a member of the Joint Replacement group on Mayo Clinic. My husband has been suffering for 8 yrs.with pain that has affected several parts of his body. He is currently under the care of a rheumatologist. She has tested him regularly for markers for all sorts of diseases.Back in2012 he had bi lateral TKR, 2015 he had bi lateral hip replacement, 2016 he had 3 levels of neck fused, 2017, he had carpel tunnel done on both wrists. In 2018 he had a fall that caused a subdural hematoma, which almost didn’t end well! But he survived and so did I. All along he has been suffering SEVERE SEVERE pain in both wrists. He is on medication for this and also. B/P issues. It is apparent to me that his pain is increasing in frequency and severity. Does anyone suffer from such debilitating pain caused by MCTD.? And if so, what has been your experience and does anyone have a great doctor for said disease? Thanks. Irish283@irish283

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Hello @irish283, Thank you for advocating for your husband. You will notice that we moved your post to this existing discussion on Mixed Connective Tissue Disease where you can meet @jennifer2010 @janicebengtson @ohiokavr @1corinthians926 @trouse @cindia1 @guthealth and other members discussing MCTD.

It sounds like your husband is in a lot of pain. Has he been diagnosed with MCTD?

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@cindia1 Cindy, I had to learn the hard way that many of the diagnoses we get should actually be called syndromes or collections of multiple diseases. I have dozens of disorders from DNA crap, and you have the same sort of collection. Sjogren's, diabetes(?), various forms of purpura, Barrett's, RA, MD, cancers, etc. Get a COMBLETE DNA reckoning, with interpretation and honesty. Find a geneticist with some experience. Then you will begin to find the strength to deal with this package. But you MUST understand this is not one disease, but several.

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I have had MCTD for 20 years. I have symptoms of Sjogrens, Reynauds, interstitial lung disease, autoimmune hepatitis, Arthritis, Steroid induced Diabetes. I am stable at the moment. The lung issues being most challenging. I would be happy to receive input or share my story.

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I was diagnosed with MCTD in Feb 2021. It started with me feeling like my hands were on fire, specifically joints. Went to the Rheum already diagnosing myself with RA….well, I was wrong about that! MCTD is a confusing disease to explain to anyone, even to your care team. AND I MEAN TEAM. You may have a PCP, Rheum, Pain Mgmt, Opthamologist, Neurologist, Endocrinologist, etc. and explaining it over and over is exhausting on top of the exhaustion you already have. I can only recommend joining Facebook support groups and other platforms where people like us can connect and share our experiences, medication trial/errors, woes, and wins.

I've found this site to be exceptional and shared it with other MCTD warriors : StuffThatWorks. Com

(I can't put a link here bc of the moderator spam filter, but message me, if you'd like, and I can get you a direct link to the MCTD page. )

I am on Instagram as @releasethecackin if you'd like to connect or get more links. Like you, I have scoured the internet for answers and to better educate myself so that I can educate others (including those that went to medical school – not hating, that's the God-honest truth…you will know more about this rare disease than most.) Join a community and share your experience, it may help you and someone else…..I wish you well and much luck!! ♥️

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@releasethecackin

I was diagnosed with MCTD in Feb 2021. It started with me feeling like my hands were on fire, specifically joints. Went to the Rheum already diagnosing myself with RA….well, I was wrong about that! MCTD is a confusing disease to explain to anyone, even to your care team. AND I MEAN TEAM. You may have a PCP, Rheum, Pain Mgmt, Opthamologist, Neurologist, Endocrinologist, etc. and explaining it over and over is exhausting on top of the exhaustion you already have. I can only recommend joining Facebook support groups and other platforms where people like us can connect and share our experiences, medication trial/errors, woes, and wins.

I've found this site to be exceptional and shared it with other MCTD warriors : StuffThatWorks. Com

(I can't put a link here bc of the moderator spam filter, but message me, if you'd like, and I can get you a direct link to the MCTD page. )

I am on Instagram as @releasethecackin if you'd like to connect or get more links. Like you, I have scoured the internet for answers and to better educate myself so that I can educate others (including those that went to medical school – not hating, that's the God-honest truth…you will know more about this rare disease than most.) Join a community and share your experience, it may help you and someone else…..I wish you well and much luck!! ♥️

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Welcome, @releasethecackin. I noticed that you wished to post a URL with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post the link for you: Stuff That Works: MTCD https://www.stuffthatworks.health/mctd

Please add Mayo Clinic Connect to your list of platforms that connect MTCD warriors. 🙂

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@colleenyoung

Welcome, @releasethecackin. I noticed that you wished to post a URL with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post the link for you: Stuff That Works: MTCD https://www.stuffthatworks.health/mctd

Please add Mayo Clinic Connect to your list of platforms that connect MTCD warriors. 🙂

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Hi Colleen!! Yes, that would be wonderful. Your help in connecting us through multiple facets could bring us one step closer to finding a treatment or cure…if anything, it will help build a stronger community!! I will be sure to mention the Mayo Clinic Connect now that I am established and seeing that such a platform exists for us. Your kindness and warmth are appreciated, sending good vibrations your way as well. Cheers!

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@renm

I have had MCTD for 20 years. I have symptoms of Sjogrens, Reynauds, interstitial lung disease, autoimmune hepatitis, Arthritis, Steroid induced Diabetes. I am stable at the moment. The lung issues being most challenging. I would be happy to receive input or share my story.

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I was diagnosed with MCTD last year although sick for many years. What medicines do you take?

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@krcc

I was diagnosed with MCTD last year although sick for many years. What medicines do you take?

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Hello!
Currently I am stable. I take prednisone and cell crept. I’m also diabetic. Steroid induced, they tell me. I take Metformin and Ozempic for that.

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Have you tried pelvic floor physical therapy?
It helped me a great deal?

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I've had MCTD since 1996. Kind of overwhelming for the first couple of years, but once I was on the right drugs and had adapted my diet and lifestyle, life is good. If you look at the disease as one of "being allergic to modern life"–additives, high sugar, bad fats in foods and sedentary life, you can change up to better choices. I mostly eat items with few ingredients, home cooked, not packaged. I like soups, roasted meat/vegetables and moderate white potato, tomato, dairy (yogurt, cheese seem ok) and whole wheat. I make sure to get a daily walk in first thing as it alleviates some of the general pain and keeps me stronger. A steroid shot in a joint after images and then a referral to PT really pays off: TMJ, hip, shoulder, etc. so far. I like the advice on GERD triggers for webmd to manage my gastric system: I have hiatal hernia, esophageal changes and dumping. It means that small meals are my forte. Some say the Lupus Handbook is helpful. In general, I reduced stress or helped get past it with water exercise, yoga and/or keeping those PT stretches going. I went to a Scleraderma self help group, and tried the Lupus one. Some of the practical ideas, like hot tea after meals, are great. Avoid buying into MLM supplements/copper or other items. You can also try ice/heat, Biofreeze, lidocaine patches, KT tape (you tube instructions), splints at night for hands/wrist, epsom salt baths. Recently, doctor has added D3, B12 (sublingual) and Magnesium to my regime. I went to Cognitive Behavior Psych for sleep issues. It does get easier, particularly when you've adapted your usual meals, simplified your life and keep movement in your life. mctdfoundation.org and the FB groups can be helpful in sharing, too.

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