Someone Like Me: Mixed Connective Tissue Disease

Someone Like Me: Mixed Connective Tissue Disease

Twelve years ago I got sick overnight. Really sick.  I was over at a friend’s house watching a movie and started feeling really hot. And not just kind of warm — I felt like I was on fire!

I was so scared I immediately called my Dad to come pick me up. I went home, got in bed and thought I just had a terrible flu.

Colleen Sullivan

Colleen Sullivan

A few days later I wasn’t getting better. My feet had swollen so much it was very painful to walk. A doctor told my parents I had possibly sprained my ankle and sent me home with orders of bed rest. But it only got worse. I started swelling all over my body and was unable to get out of bed.

Within 10 days I went from a vibrant teenager to totally bedbound and my life would never be the same.

I still thank God for my luck that day.

Things got so bad so fast, my parents took me to an internist. I still remember waiting in the exam room. My parents both stood there by my side and I could see the worried looks on their faces as they kept assuring me everything would be okay.

I was lying on the examination table with a burning hot fever of 105 degrees. I held my Dad’s hand and it felt so cool and reassuring against my hot swollen hand. I was too sick to be scared or worried. I remember I had to be carried in and out of the room. I remember the cold tears running down my hot face.

Finally the doctor came in and looked me over. Immediately he said he’s pretty sure he knows what’s going on. He told us he had just written his final project for medical school on a very rare disease, dermatomyositis, and that I had all the characteristics of it.

He sent me across the hall for testing and started me on prednisone right away. If it would have been any other doctor that day, who knows what would have happened to me. I hear stories every day how so many people go undiagnosed for years because these conditions are just so rare.

Fast forward 5 years and I started to go into remission. I had so many treatments, so many needles, and so many tests, I felt like a pin cushion. I sat for days in cancer treatments centers getting chemo. It was really hard, but it paid off. I was finally starting to feel better.

I remember very vividly one day after an IV treatment, I got home and my Dad asked me how I was.

I said, “Hey, Dad! Look what I can do!”

And I jumped up on the couch and started bouncing. My Dad and I immediately started crying and he jumped up and was bouncing away with me. We were so happy I could do that again! I still had pain from the damage done — but wow, I could go out and live again.

Now jump forward another 5 years. Some very stressful things happened in my life. I moved across state lines 4 times in one year. I had 3 deaths in the family. And after moving to Florida this last time I guess I just broke down.

MTCD can cause painful deformities of the hand known as "swan neck" and hitchhiker's thumb".

MCTD can cause painful deformities of the hand known as “swan neck” and “hitchhiker’s thumb”.

I started feeling massive fatigue and pain again. My muscles got weak and I started getting fevers again. I went to a doctor and got the diagnosis of MCTD, which stands for Mixed Connective Tissue Disease. He explained it wasn’t a new disease, it’s one I had all along and they just didn’t know it yet.

That’s the thing about MCTD, it’s tricky. It’s a very rare auto-immune condition that is a combination of connective tissue diseases, such as lupus, rheumatoid arthritis, scleroderma, polymyositis, or dermatomyositis.

MCTD is characterized by having two or more of those autoimmune conditions. For years I was only showing one, but the others were only lurking and waiting.

You might be thinking tissue disease? What the heck is that?

Connective tissues are the parts of our body that hold the cells together. These tissues form a framework for the body. They attach ligaments to our bones, and need to be capable of stretching and returning to their normal length. Connective tissue diseases make these tissues deform or become weak and break, unable to stretch and return to their normal position.

This can cause a variety of problems including swan neck deformity, hitchhikers thumb, intense pain, numbness, tingling, difficulty walking, and many more. It can also cause abnormalities in the heart, lungs, eyes, and skeleton.

MCTD also triggers a spontaneous over-activity in the immune system, which results in the production of unusual antibodies in the blood.

The symptoms don’t usually appear all at once. In my case, they happened over a number of years, which can make diagnosis really complicated. Early signs and symptoms often involve the hands. Fingers can swell up like sausages, and the fingertips might turn white and become numb.

In later stages, some organs — such as the lungs, heart and kidneys — may be affected. Other symptoms include chronic pain, chronic fatigue, extreme sensitivity to hot or cold, migraines, anxiety, difficulty sleeping, deformities of the joints, and very tight skin.

You also might be wondering how I live with this condition. Honestly, I really don’t think about it all that much. Whenever a new problem presents itself, I make it work. I adapt.

My fingers are the worst deformities I have. Seven of my fingers are affected and they are extremely painful to use. Typing was very difficult at first, but I adapted. I found some pain medicine that really works and allows me to type for short periods. I also re-learned how to type using the fingers I can still move freely.

Before I got sick I could type 100 words a minute. Now I’m down to maybe 50. But hey, at least I’m still typing!

I made this YouTube video a several months ago to give people an idea of what my hands look like.

Think for a second how many times a day you use your hands. Seriously, just think about it. Right now you’re probably using your hands to hold your mobile device or scroll on a mouse.

Everything has changed for me. I only wear clothes that slip on easily, with no buttons. I can only wear shoes without laces. And as far a cooking goes, I just can’t do it anymore. Pots and pans are much too heavy to pick up and I just don’t have the energy to stand for long.

Luckily for me I have people in my life willing to help me out. Otherwise I have no idea what I would do.

My family and fiancée are so supportive and I thank God everyday for them. I am still on medicine and still hoping for remission. I’ll never give up because I’ve seen remission. I know it’s real and you can all have remission too!

One of the best things for me these last couple of years has been support groups. I seriously would have lost it a bunch of times if it wasn’t for the friends I’ve found in the groups. I strongly suggest all of you with chronic conditions join one.

It’s great to have friends and family, but nothing is like knowing someone who really understands you.

6Colleen Sullivan lives in Florida. As a teen, Colleen was diagnosed with muscular dystrophy, rheumatoid arthritis, scleroderma, mixed connective tissue disease and other auto immune disorders.

Colleen has a Facebook support group for people with chronic health conditions called Someone Like Me. It’s a safe and fun place to make friends, ask questions, and share stores with people who understand.

Colleen’s father has another Facebook group called Patients United for DEA Reform.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

There are 6 comments for this article
  1. Kees Oomen at 6:08 pm

    Hi. I accidentally came across your website. My mum has MCTD. The main symptom was very cold and bloodless fingers, which is a problem in a cold climate like Holland. My wife, children and I live in Australia, where wife/children use olive leaf extract to prevent colds, etc. A few years ago my mum tried this as well and to this day she has never had the finger issue again (after 50 years of suffering….). To us it almost seems like a miracle. As far as we know there are no side effects, so it may be worth a try. Her doctor in Holland was still trying to prescribe her drugs (incentives from the pharmaceutical industry?), but mum is refusing to take them….. Hope this helps. It might be worth a try. All the best.

  2. Elly at 3:05 pm

    Hi Colleen,
    You are a true super hero in the pain community, thank you so much for sharing your story, I am a nurse now at home in chronic pain from 2 failed Neck Fusions, so I have been on both sides of line. I understand so much my Doctors freak at how much my brain is like a sponge on various diseases, I knew a lot as nurse, but when I became a patient that was a very heartbreaking situation! I would say more but not needed, you are so incredible & strong, lucky to have loving people, I lost most b/c of the Pain roller coaster! Hope you get well, thank you again pain warrior!
    Elly: BA, BSN, ME.d

  3. Michelle at 1:09 pm

    Thanks for sharing your story Colleen. It helps others so much to hear that someone else out there has or is going through it. Thank God that doctor was on that day, and thanks for being such a good friend. (thank you thank you!)
    love love
    Michelle

  4. Terri Young at 10:13 am

    Hi Colleen, I just want to say that I think it is wonderful that you have such a strong and positive attitude while having to live with such difficult challenges. You are an inspiration to me and I am sure, to many other people as well. Thank you for sharing your story. It has been very informative to me because I was just diagnosed with Lupus. So stay as lovely and strong as you are!
    Terri