MCTD (Mixed Connective Tissue Disease)

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

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

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.

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!

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.

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.

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)