MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, Oct 3, 2011

Ok, here goes my story….4 Weeks ago I was diagnosed with Mixed Connective Tissue disease…I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I’m married…so I have a lot going on and this has pretty much put a stop on everything…I’m on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day…Some days I’m fine and other days I can’t get out of bed either because I’m so tired or I’m having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I’m losing my mind and body for that matter…..Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me….HELP

@angiea

Hi just read your post. Been living with Sjogren Syndrome and Lupus for over a year. These particular dieases are considered auto immune. Therefore your body is attacking itself. So you are going to have to make some major changes to compensate for the fatigue the pain and any other symptoms you may have. Good news though the plaquenil will resolve your fatigue. the only thing is it will take 3~6 months to kick in! Watch it the prednisone will help pain but it will make you gain alot of weight!!!!! Exercise when you can! DO NOT over do it!!!!! Your body will let you know.Take Care!!!!
AngieA.

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Hello @kgoodwin9, thank you for sharing your story. For a lot of us prednisone is the magic pill but you are correct – the goal is to get off of it as soon as you can and if you can. For my first occurrence of polymyalgia rheumatica (PMR) it took me 3 years to taper off of it. I was started out on a dosage of 20 mg and it immediately took away the pain in my shoulders, arms and hands. It was in remission for 6 years but came back in the middle of last year. I was put on 20 mg again and I’m now down to 6 mg. I’m hoping I can get off of it before the end of the year but that in itself is a struggle. I was trying to reduce the dosage by 1 mg a month but the last 2 times I’ve tried to reduce it, the pain comes back. So, this next month I’m going to try 1/2 mg reduction and see how that goes.

I’m guessing the prednisone is reducing the inflammation in the joints and tissues which gets rid of the pain. I also try using supplements that help reduce inflammation but not sure how much it’s helping.

I like your question – you are your best advocate and you need to determine if it really is helping you. In the end, only you can make the decision – it’s your body. The only thing I would add is that you always want to make sure it’s an informed decision and it’s a good idea to have the discussion with your primary care doctor even if it’s to use them as a sounding board. Asking better informed questions of your doctor will (or should) help them help you. If the doctors aren’t listening to each other that’s a real problem and I would be on a search to find one that did listen.

Hoping others will jump in her and share their story and something that might help.

John

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I’ve had flare ups for years even with the positive Ana tests dr said it was fibromyalgia, been on cymbalta. I am 50 now and flare ups have worsened. I’ve experienced my worse ever this week with more pain than I’ve ever experienced. I figured that it was the hurricane stress and all the extra work boarding up my house. Last year I saw a rheumatologist and after all the tests and X-rays, told me I have mctd. Makes sense since my mom has overlapping diseases. Dr wanted to put me on Plaquenil and prednisone and I left there and ignored him since I didn’t want my eyes to go bad and didn’t want to be on prolonged prednisone. I got a massage last week and my body hurts more than ever. Think he was rough on me. Also, I hurt so bad Thursday I ran home from work to jump in a hot salt bath because I couldn’t take the pain. I don’t feel any better, I feel worse with deep pain, headache and nausea, red hot face. I think it’s time I take this seriously now. My boss looks at me like I’m not really sick. When I’m down, it’s at least 3 days or so before I can get up. I am going to start with eating healthier and taking care of myself with lots of sleep/rest. This is the worst flare I ever had and it’s bad. Eventually, I may have to rethink the Plaquenil but I will try to stay off the steroids as long as I can. When the rheumatologist told me I had mctd I thought he said I had a connective tissue disease” and I thought, which one? That’s when I thought it was a bs diagnosis but I looked at the paperwork and his diagnosis and did some research and now it all makes sense. The symptoms of the 3 diseases, same as my Mom, are exactly what my symptoms are and now I know what I have. I’m used to go go go all the time but with this disease you can’t.

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Hello @mariejk1,

Welcome to Mayo Connect. I’m glad you found us and I’m hoping you can find some relief for your pain through discussions with other Connect members. I know that stress can play a big part in making things worse and the hurricane stress must have been horrific. I am currently on prednisone for my second round with PMR. The first time over 6 years ago it took me 3 years to taper off of the drug. I didn’t like taking it but it really did it’s job of getting rid of the pain. With this second round of PMR I was again put on a dose of 20 mg which got rid of the pain and it’s a little over a year and I’m down to 5 mg a day and hoping I can be off of the drug by the end of the year. My first occurrence was an eye opener for me. I let the pain get so bad before I decided to see a rheumatologist that I went from struggling to walk up the basement stairs to actually crawling and using a walker. In retrospect, I wish I had not waited so long before seeing the doctor for the pain. I am really glad you are being proactive, being your own advocate and learning as much as you can about your health problems.

I am tagging other Connect members so hopefully they will be able to share their thoughts with you. @faithandlove @snowaries @numby @xanderbam @powerofpositive @cindia1 @livingngrace @zbrooks @regeanna @jewel8888 @kariulrich @luladavis @dogmamat can you offer and thoughts or suggestions for @mariejk1

I would also like to share Kanaaz’s (@kanaazpereira) post with you about Mayo’s Connective Tissue Disorder Clinic which contains some good information:
https://connect.mayoclinic.org/comment/8328/bookmark/?ajax_hook=action&_wpnonce=653c67f631
John

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Welcome to the diagnosis!! I struggled with fatigue all the time until I started listening to my body. I too was a teacher , volunteer over active person and my friends are having a very hard time with my need for down time. It’s nice to have this site to help me realize I am not alone. If I over do it one day I really struggle the next day so I am working on setting up boundaries and learning to say no by prioritizing what the most important things are I need to do . I had low iron and b12 which I hope you have had checked out and now take vitamins to keep the levels up. I am gluten/grain free and that has also helped my energy levels. The mos t important thing is listen to your body,and try to stay on a regular schedule with lots of down time. Good luck.

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I appreciate your input into this conversation, @wottone. I agree that learning to live within your limitations is an important part of part of living well with chronic illness. Thanks for your sharing your comments and what you have learned.

It sounds as if you have adjusted your activity level as well as your diet. It isn’t easy to say “no” when others want to include you in activities that might not be helpful. Do you have any “words of wisdom” that you would like to share on how you approach these situations?

Teresa

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@hopeful33250

I appreciate your input into this conversation, @wottone. I agree that learning to live within your limitations is an important part of part of living well with chronic illness. Thanks for your sharing your comments and what you have learned.

It sounds as if you have adjusted your activity level as well as your diet. It isn’t easy to say “no” when others want to include you in activities that might not be helpful. Do you have any “words of wisdom” that you would like to share on how you approach these situations?

Teresa

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I have a few friends who also have auto immune which really helps. We try to educate those around us to understanding our need for down time. And the unpredictability of our energy levels and disease issues ! When I have a flare up I just say I’m sick and disappear. I earlier wrote about the parkwood points plan from St Joseph’s hospital in London. The second video on you tube has a brief outline of using a points system to help you gage your activity levels. It was meant for concussion patients. But has worked well for me. When I’ve used up my 15 points for the day I just say honestly points are done I’m going to bed !!! ( points for getting up and dressed, talking on the phone, making a meal, etc. ) it helped me realize how much energy these seemingly small tasks were using up of my energy to. It also was easy to explain to people I’ve used up my points and I was done for the day. liked the concreteness of it and my friends were educated as well. !! Following a very healthy diet has also been a big help for me. Wheat free, organic and as natural as possible has been the best. ! Learn to say I’m just not up to it and listen to your body has really helped me !! Leaning on this community has been very supportive for me too.

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@hopeful33250

I appreciate your input into this conversation, @wottone. I agree that learning to live within your limitations is an important part of part of living well with chronic illness. Thanks for your sharing your comments and what you have learned.

It sounds as if you have adjusted your activity level as well as your diet. It isn’t easy to say “no” when others want to include you in activities that might not be helpful. Do you have any “words of wisdom” that you would like to share on how you approach these situations?

Teresa

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Hello again, @lillone43 ,

What great ideas! Especially your use of the “point system” I found some information (with videos) online at https://www.sjhc.london.on.ca/concussion-mild-traumatic-brain-injury/treatment-programs#abiweek1. I’m looking forward to looking at this. It will certainly be helpful to many people who are looking for ways of moderating their activity and rest level.

I’m also glad that you have found this community to be supportive of you. We are here and ready to listen.

Teresa

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@mariejk1

I’ve had flare ups for years even with the positive Ana tests dr said it was fibromyalgia, been on cymbalta. I am 50 now and flare ups have worsened. I’ve experienced my worse ever this week with more pain than I’ve ever experienced. I figured that it was the hurricane stress and all the extra work boarding up my house. Last year I saw a rheumatologist and after all the tests and X-rays, told me I have mctd. Makes sense since my mom has overlapping diseases. Dr wanted to put me on Plaquenil and prednisone and I left there and ignored him since I didn’t want my eyes to go bad and didn’t want to be on prolonged prednisone. I got a massage last week and my body hurts more than ever. Think he was rough on me. Also, I hurt so bad Thursday I ran home from work to jump in a hot salt bath because I couldn’t take the pain. I don’t feel any better, I feel worse with deep pain, headache and nausea, red hot face. I think it’s time I take this seriously now. My boss looks at me like I’m not really sick. When I’m down, it’s at least 3 days or so before I can get up. I am going to start with eating healthier and taking care of myself with lots of sleep/rest. This is the worst flare I ever had and it’s bad. Eventually, I may have to rethink the Plaquenil but I will try to stay off the steroids as long as I can. When the rheumatologist told me I had mctd I thought he said I had a connective tissue disease” and I thought, which one? That’s when I thought it was a bs diagnosis but I looked at the paperwork and his diagnosis and did some research and now it all makes sense. The symptoms of the 3 diseases, same as my Mom, are exactly what my symptoms are and now I know what I have. I’m used to go go go all the time but with this disease you can’t.

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Hi mariejk1, I would NOT worry about your eyes and Plaquenil. As long as you have an eye exam once each year, the chances are slim that your eyes will suffer. I am 72 and was diagnosed with Sjrogrens and MCTD about 5 years ago after about 8 years of symptoms and no doctor being able to tell me what was wrong. Finally, my daughter who has Lupus, demanded I see a certain rheumatologist and did …. I have good days and some not so good. Arthritis in the spine and crazy other ailments I won’t even mention can sometimes limit me but with a pill regime of Plaquenil, civilemine (for dry mouth, a terrible problem for me) and zanaflex for some pretty bad muscle pain, I keep going. In fact, I am a part-time caregiver for my daughter and am so glad I can do that. I do take anti-depressants for some pretty severe problems I had, but it is controlled. I do protect my sleep and try to eat well. I attempt to live a life that isn’t limited by discomfort but when I can’t, I acknowledge the reality and take it easy. Got to listen to your body. Try NOT to stay on prednisone. It can be a miracle drug but also comes with some very nasty side effects down the road. Good luck.

Dianne

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@mlew0731

Hi! I’m newly diagnosed with MCTD. I’m 32 years old, married and gave two young girls. I work full time and I’m very type A. Honestly, my symptoms haven’t disabled me, but right now the fatigue and trouble sleeping are bringing me down.
Can anyone offer suggestions to help deal with the aches and pains at night? Ideas for combating the daytime fatigue? Right now, I depend on coffee and energy drinks to make it through work. At night, I’ll take Benadryl if it gets bad enough to knock me out. :/
I appreciate any and all advice. Thanks in advance!

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ML, I have been dealing with chronic pain for 10 years and will share what works for me, i make it a part of my meditating, since no amount of medications stop the pain…. I meditate into it by breathing in and while breathing out I maintain an image of pain leaving my body with the air expelled….. once I got into it the pain seems to lift or I am unaware of it….

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@snowaries

Your case is interesting. I started having severe dizzy spells, heat flashes mixed with chills, skin break outs, extreme fatique. At first, I thought I was going through early menopause based on the symptoms. When I don’t feel well, I am out for the count, literally no energy.

I have several drs running several tests which all come back as normal. Then one test showed positive for Shogrens (not sure of the spelling). Saw a rheumatologist and he said I scored positive but too low for shogrens. He did a saliva test and blood work again and it came back as normal this time. I can also take allegra which relieves the symptoms so according to the rheumatologist, no shogrens.

My allergy dr thinks I may have hives. I took 2 more tubes of blood and now he thinks it may be Mixed connective tissue syndrome. I am fatigue, dizzy, etc but the other symptoms I really don’t have.

I was sent to an ENF which after several balancing tests and a brain scan said I have a 23% loss in my inner ear on the left side thus the source of my dizziness and balance issues. This makes sense since after I work out, I am too dizzy to move. Heck, I can be sitting and get dizzy. They have me on clonazepam to take a night and seems to be working. But, if I wake up dizzy, I have nothing to help me during the day.

This all started with severe skin break outs everytime I ate. I can take one bite of food or a sip of a beverage and my head is spinning, my skin breaks out in rash looking lines and/or spots. The only things I am safe from is water, unsweet tea, and diet soda. I tested negative for food allergies, pollen, nature, and actually only allergic to dust (after being poked several times).

I’ve had a nasal MRI, breathing tests, and another round of 10 tubes of blood for various tests only to be informed this past Wed that everything was normal.

I am quite frustrated as to what is going on with me. I too am very active, travel for my company weekly, in school full time, and stay busy busy. I am wondering how your MCTD was diagnosed and if your symptoms progressed over time. Do you think it came about with diet or certain foods?

I am also curious as to which foods help / hinder these symptoms. I heard various kinds of berries help as well as rice, fish, cinnamon, flex seed.. does all this really work?

Anything you can offer would be greatly helpful and appreciated as I am frustrated yet anxious to find out what is going on with me.

Thanks.

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I received tremendous help from the pain clinic at Mayo Rochester, was referred there by a spine doctor at Mayo who was very good. You could try that route. I apologize I meant for this response to go to the following comments.

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What is the online address for the Mayo Clinic’s Scleroderma presentation that was on in Nov.?

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Hi @barblacanne,
Here’s the link for the Video Q&A about Scleroderma: https://connect.mayoclinic.org/webinar/video-qa-about-scleroderma/

You can also check out information about all upcoming and past videos here: https://connect.mayoclinic.org/webinars/

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@snowaries

Your case is interesting. I started having severe dizzy spells, heat flashes mixed with chills, skin break outs, extreme fatique. At first, I thought I was going through early menopause based on the symptoms. When I don’t feel well, I am out for the count, literally no energy.

I have several drs running several tests which all come back as normal. Then one test showed positive for Shogrens (not sure of the spelling). Saw a rheumatologist and he said I scored positive but too low for shogrens. He did a saliva test and blood work again and it came back as normal this time. I can also take allegra which relieves the symptoms so according to the rheumatologist, no shogrens.

My allergy dr thinks I may have hives. I took 2 more tubes of blood and now he thinks it may be Mixed connective tissue syndrome. I am fatigue, dizzy, etc but the other symptoms I really don’t have.

I was sent to an ENF which after several balancing tests and a brain scan said I have a 23% loss in my inner ear on the left side thus the source of my dizziness and balance issues. This makes sense since after I work out, I am too dizzy to move. Heck, I can be sitting and get dizzy. They have me on clonazepam to take a night and seems to be working. But, if I wake up dizzy, I have nothing to help me during the day.

This all started with severe skin break outs everytime I ate. I can take one bite of food or a sip of a beverage and my head is spinning, my skin breaks out in rash looking lines and/or spots. The only things I am safe from is water, unsweet tea, and diet soda. I tested negative for food allergies, pollen, nature, and actually only allergic to dust (after being poked several times).

I’ve had a nasal MRI, breathing tests, and another round of 10 tubes of blood for various tests only to be informed this past Wed that everything was normal.

I am quite frustrated as to what is going on with me. I too am very active, travel for my company weekly, in school full time, and stay busy busy. I am wondering how your MCTD was diagnosed and if your symptoms progressed over time. Do you think it came about with diet or certain foods?

I am also curious as to which foods help / hinder these symptoms. I heard various kinds of berries help as well as rice, fish, cinnamon, flex seed.. does all this really work?

Anything you can offer would be greatly helpful and appreciated as I am frustrated yet anxious to find out what is going on with me.

Thanks.

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Hi @barblacanne,

I’m so glad you’ve returned to Connect! Thanks for the update; how are you doing?

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I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was most recently and correctly diagnosed with sjogrens/lupus. So this can be a tricky diagnosis but definitely manageable! First and foremost find an rheumatologist that will become an advocate and if not a rheumy a good internist (that’s what I ended up with) and your are a busy lady as was I and that’s actually a huge benefit that you do not want to forfeit. Even on your worst days, do not give in. Pull up the big girl pants and forge ahead. You will feel better for it, I promise. Go to bed early if you have to but do not give into the couch, its your worst enemy. Beware of the drugs….prednisone and plaquinil for a long time are not your friends. Also I don’t care what the TV says Cymbalta is like heroin it will be the worst detox of your life. So is the other drug they push on TV for Fibro, don’t take that one either. Methotrexate is
another tough drug but can be helpful. Exercise and a low dose anti imflammatory are your best friends a good diet and good sleep and again do not heed to the couch/bed on bad days. Keep in touch with your doctor and pay attention to you. Also helpful is heat I have found. Just be good to you and do not get over tired I have found that I have had to learn to say NO! to a lot of things in life. I worked full time, volunteered almost full time, had two travel ball players (one national) a husband that traveled year round and I learned to draw hard lines in the sand. I also learned to listen to my body when enough was enough I listened. I will help I promise. Flares are tough but remission is wonderful. If your doctor sounds like he is full of crap he probably is – find another one, this is largely uncharted territory, MCTD is just waiting to become something else typically RA, Sjodrens or Lupus. Take care and be good to you. I am happy to talk or listen anytime, PM me, my auto immune disease took on a whole journey that became a mayo study, too long for here. I wish you well. :0)

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@lauramorin

I was diagnosed with MCTD in 2013 and misdiagnosed with fibro many years earlier. I was most recently and correctly diagnosed with sjogrens/lupus. So this can be a tricky diagnosis but definitely manageable! First and foremost find an rheumatologist that will become an advocate and if not a rheumy a good internist (that’s what I ended up with) and your are a busy lady as was I and that’s actually a huge benefit that you do not want to forfeit. Even on your worst days, do not give in. Pull up the big girl pants and forge ahead. You will feel better for it, I promise. Go to bed early if you have to but do not give into the couch, its your worst enemy. Beware of the drugs….prednisone and plaquinil for a long time are not your friends. Also I don’t care what the TV says Cymbalta is like heroin it will be the worst detox of your life. So is the other drug they push on TV for Fibro, don’t take that one either. Methotrexate is
another tough drug but can be helpful. Exercise and a low dose anti imflammatory are your best friends a good diet and good sleep and again do not heed to the couch/bed on bad days. Keep in touch with your doctor and pay attention to you. Also helpful is heat I have found. Just be good to you and do not get over tired I have found that I have had to learn to say NO! to a lot of things in life. I worked full time, volunteered almost full time, had two travel ball players (one national) a husband that traveled year round and I learned to draw hard lines in the sand. I also learned to listen to my body when enough was enough I listened. I will help I promise. Flares are tough but remission is wonderful. If your doctor sounds like he is full of crap he probably is – find another one, this is largely uncharted territory, MCTD is just waiting to become something else typically RA, Sjodrens or Lupus. Take care and be good to you. I am happy to talk or listen anytime, PM me, my auto immune disease took on a whole journey that became a mayo study, too long for here. I wish you well. :0)

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Hello Laura (@lauramorin) — I see this is your first post. I would like to welcome you to Mayo Connect and thank you for sharing your story and some great advice. Was your post addressing or responding to a specific member? One way to make sure the person gets notified of your post is to tag them by adding their Connect username (@userxxxx).

Thank you again for taking the time to share your story and what has helped you.

John

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