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.

@lisalucier

Hi, @wofmaria – welcome to Mayo Clinic Connect. Though some of the posts in this discussion on mixed connective tissue disease (MCTD) are a bit older, I'm hoping that members will return and offer some input on diet with MCTD to help the immune system fight off this disease. @bunnysammy @seanlroop @mnkennedy @powerofpositive @regeanna may also have some thoughts, as may @jessicanpayne.

While waiting for some of these members to join in, this Mayo Clinic information on MCTD may be helpful: https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147

Will you share a bit of your story with MCTD, @wofmaria? Is this something affecting you or a loved one?

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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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@guthealth

Please read about or watch You Tube videos about the Specific Carb Diet and GAPS diet. For some of us what we eat has a huge impact on our immune system. An inflamed gut allows for undigested food particles to enter bloodstream due to leaky gut. One of the responders above mentioned the SCD and gave great advice and suggestions. Other thing I have done is purchase a juicer and drink diluted carrot/celery juice twice a day. Sometimes I juice a piece of ginger or turmeric root and add filtered water. I am proceeding cautiously with juices but think they help. I have eliminated all refined sugar. Only consume those coming from fruit and a little honey here and there. I am mostly dairy free but recently purchased a yogurt maker and made the 24 hour yogurt specified in the SCD book. Will start trying that very cautiously. One tablespoon a day to see how I react. Best to work with a nutritionist, though it took me three months to find one.

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Thanks, I've been hearing about the GAPS diet lately. I will have to do some reading on it.

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@wofmaria

Thanks, I've been hearing about the GAPS diet lately. I will have to do some reading on it.

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You have been through a lot and I think stress is definitely a trigger to these autoimmune issues. I wish you good health.

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Hello. I am not officially diagnosed, but it has been suggested I may have MCTD with beginnings of Scleroderma (19 yo female). What are some questions you wish you would have asked when doctors were running diagnostic tests? Do you have specific antibodies for which you recommend to be tested? Specific data/ notes you wish you would have recorded about your symptoms? Scans that provided crucial informational?
Thanks in advance!

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@1corinthians926

Hello. I am not officially diagnosed, but it has been suggested I may have MCTD with beginnings of Scleroderma (19 yo female). What are some questions you wish you would have asked when doctors were running diagnostic tests? Do you have specific antibodies for which you recommend to be tested? Specific data/ notes you wish you would have recorded about your symptoms? Scans that provided crucial informational?
Thanks in advance!

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Welcome to Mayo Connect, @1corinthians926.

You are asking some great questions. Here is some information from Mayo's website that you might find informative, https://www.mayoclinic.org/diseases-conditions/mixed-connective-tissue-disease/symptoms-causes/syc-20375147. I'd also like to invite @wofmaria and @guthealth to this discussion.

Also, here is a link to a video presentation about Scleroderma. While it was shown in 2017, you might find it helpful,
https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

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I am going through it also.

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@jennifer2010

I am going through it also.

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Hi @jennifer2010, you'll notice that I removed your email address from the public forum. We recommend that you use the secure, private message function to share personal contact information to avoid getting unwanted spam. Keep in mind that by sharing here, you will help many.

It really helps to hear from others who have first-hand experience with MCTD. I really like the questions that @1corinthians926 asked. perhaps you can help answer some of them.
– What are some questions you wish you would have asked when doctors were running diagnostic tests?
– Do you have specific antibodies for which you recommend to be tested?
– Specific data/ notes you wish you would have recorded about your symptoms? Scans that provided crucial informational?

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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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@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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