I live in the grand state of Texas! I' love Texas!! I've learned it's hotter than the devils tongue...more beautiful than a fresh baked cup cake....and friendlier than the high school counselor that gave you the creeps. Come share my adventures in life. I'm a mother of three beautiful one's & two hairy ones (my doggies). I must also mention that I'm the CEO of the family. I've learned that life is more than 'my fine shirt just got soaked' bath times, 'hey we are so running fashionable late again' swimming lessons, your most recent 'break down' in the laundry room (yes I'm talking to you; now put down the dryer lint slowly), the latest 'does my butt look big' moment, or even that rock awesome meal you cooked last night. Life is random, sexy, unbelievable, predictable and darn cool. Lets get crafty, create, explore Texas, and have some pretty sweet experiences!

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Living with Mixed Connective Tissue Disease

Some of you readers that really know me may know that I have Mixed Connective Tissue Disease (MCTD) or you may think I have Lupus or you may just know that I get sick and have struggles that not everyone has.

Most people don’t know very much about MCTD, even many doctors struggle with all that can be associated with this auto immune disease.  I wouldn’t wish this on anyone.  One of my biggest fears, obviously, is that my kids may someday inherit some of the problems that I face.  I pray that I can have it all.  I’d much rather be the train wreck that copes with this then see my children have any resemblance of these health problems.

So what is MCTD?

Definition

By Mayo Clinic staff

Mixed connective tissue disease (MCTD) is an uncommon autoimmune disorder that causes overlapping features of primarily three connective tissue diseases — lupus (a long term auto immune disease that may affect the skin, joints, kidneys, brain, and other organs), scleroderma (Scleroderma is an autoimmune disease of the connective tissue featuring skin thickening, spontaneous scarring, blood vessel disease, varying degrees of inflammation, associated with an overactive immune system) and polymyositis (Polymyositis is a disease of muscle featuring inflammation of the muscle fibers) {yep I get to have a little bit of a lot of different diseases}.  Mixed connective tissue disease also may have features of rheumatoid arthritis.  For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease.

Indications of these diseases usually don’t appear all at once, which complicates the diagnosis of mixed connective tissue disease.  People with mixed connective tissue disease often are first diagnosed with lupus (this is what happened to me.  When I was 15 they thought it was juvenile rheumatoid arthritis, then as I got a bit older they changed the diagnosis to Lupus, but as things have progressed it’s changed to be MCTD).  As the disease progresses and other signs and symptoms become apparent, the diagnosis is updated (there are lots of blood tests I have done on a monthly to three month basis and even my most mild blood results don’t come near to being in the ‘normal’ range).

Mixed connective tissue disease occurs most often in women and is usually diagnosed in their 20s and 30s. Occasionally children are diagnosed with mixed connective tissue disease.

Some of my daily symptoms are:

  • Raynaud’s disease (see explanation below)
  • Fatigue (it’s more then wanting to hit the snooze button peeps…I’m ALWAYS tired)
  • General feeling of being unwell (malaise..like ugh)
  • Muscle pains (my muscles will ache and even my blood hurts my veins at times)
  • Joint pains (this is where the most swelling happens)
  • Mild fever (this is pretty much a constant)
  • Joint swelling (will also feel hot)
  • Swollen hands and puffy fingers (some days my rings fit and others…not so much)
  • Head aches, confusion, and memory problems (feel floaty, and out of my head)
  • Eyesight fluctuations

What Is Raynaud’s?

“Raynaud’s is a rare disorder that affects the arteries. Arteries are blood vessels that carry blood from your heart to different parts of your body.

Raynaud’s sometimes is called a disease, syndrome, or phenomenon. The disorder is marked by brief episodes of vasospasm (VA-so-spazm), which is a narrowing of the blood vessels.

Vasospasm of the arteries reduces blood flow to the fingers and toes. In people who have Raynaud’s, the disorder usually affects the fingers. In about 40 percent of people who have Raynaud’s, it affects the toes. Rarely, the disorder affects the nose, ears, nipples, and lips.”

So in other words my hands and toes (among other parts) go blue/white a lot and it’s painful and embarrassing.  If I get nervous or cold it’s the worst and can trigger “Raynaud’s attacks.”   During an attack, little or no blood flows to affected body parts.   Getting in and out of a hot bath for example means that I will have purple/black intensity in my skin coloring which is crazy cool to see, but not so much to feel.  Last winter my toes got so bad that I had ulcers pushing my toe nails up away from my toe…pain city.  I went to a vascular surgeon and they did all those tests to see how my blood flow was.  Well my blood flow was perfect up until you reached my wrists on my hands and my ‘knuckle’ above the toes and then flow ceased to exist.  There isn’t a ton that can be done other than avoid cold and avoid stress.  Texas should help compared to Utah as far as extreme temperatures go.

As far as fatigue, malaise, fever’s, swelling and pain goes…I deal.  I mean really there is no better way to say it other then I deal.  It never goes away.  I honestly get tired of being tired, and sick of being sick, etc., but this is a trial that I face.  I face it head on.  I go to my doctor appointments regularly…I take the medications that are appropriate…I try to be scheduled in my sleeping habits…I try and eat a balanced diet…I take my vitamins…and I try to see the positive side of all the experiences that I’ve had.  It’s never easy to have a chronic illness.  I think the hardest part (even harder then dealing with pain or infections/flare ups) is making commitments and explaining.  I hate to make a commitment…I just never know if I’m going to be sick that day or swelled up that day or whatever.  I never like to call and cancel or show up to something at only like ten percent of my best, but that’s how I roll.   I hate explaining to someone that I’m ‘sick’.  I ‘look’ healthy….I mostly ‘act’ healthy, so it’s hard for others to ‘believe’ that I have so much going on inside of my body.  So, don’t take me for a flake even when I act like one.  Don’t automatically assume that you know why someone is the way they are and don’t judge someone until you have walked ten steps in their ulcerated, swollen blue toes!

On a positive side.  Medicine is amazing.  The human body is amazing.  Life is amazing.  I pray we all can find hope in dealing with our biggest challenges.

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Comments (20)

  1. Jessica Howard 05/15/2017 at 10:55 am

    I love this article! Everything about it!! I was 10 when so was diagnosed. I am 33 now. I have two healthy boys, and for that i am grateful! But the (daily) struggle is REAL!! You hit the nail on the head in describing a ‘day in the life..’ Thank you!

  2. Kimberly Colegrove 04/24/2017 at 10:36 pm

    Thank you for your story. I,too,have had MCTD for 26 years now. I was diagnosed when I was 19 years old but was first “sick” around 17. I had the Raynaud’s first. I am 46 now and have always believed to stay positive but it’s not always easy.I know that it is getting more “aggressive”,but yet my meds have not really changed much in all these years. I have “flares” very often and work a 40+ work week, but I know I could not qualify for SSDI,nor do I really want that now. My fears are how long I can work, when will this truly get worse and how will I cope. I pray daily,and like I said, stay positive, thanks to people like you. 🌹

  3. Tamara K. 12/19/2016 at 7:50 pm

    I have MCTD and have found Low Dose Naltrexone along with Plaquenil to be extremely helpful for me… my swelling and range of motion are 90% improved on these two medications. Low dose naltrexone is made through compounding pharmacies – look into it – there is lots of information on Pinterest! My rheumatologist wasn’t overly supportive of me trying the LDN but my primary care doctor was willing to try it and it helped tremendously! Chiropractic care has also been beneficial for me. Hope you feel better!

  4. Ernie 10/06/2016 at 5:34 am

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  5. Laraine ranahan 05/19/2016 at 2:30 pm

    My 16 year old daughter has Raynaud’s. She has just had a flare from stress of taking a test. She feel numb and achy is that normal for this disease?

  6. Trish 05/11/2016 at 11:03 am

    Would you mind sharing the name of your specialist?

  7. Heidi 04/01/2016 at 4:39 pm

    You are very right about doctors not even understanding. I got my diagnosis from the rheumy and asked my gp what that means. She said very honestly that she had no idea. You described it well. It’s hard to find good info on the subject. I deal too. Every single day.

  8. Joanne 01/26/2016 at 12:01 am

    I also have m c t d . Every one thinks it is not bad. When I had my hearing for social security the judge said you don’t have lupus .. You only have a m c t d. ( on top of bipolar and panic attacks,.) Erythromelgia.. Which is the opposite of raynauds. . If I try to keep my feet warm to protect them ..it turns into a heat attack and I can’t stand or walk. I can’t find a doctor to help. I am glad I found this post at least I know there are others out there.

  9. Linda Evans 01/02/2016 at 6:56 am

    Thank you very much for writing this article Jenny. I have loved one who was diagnosed with in the last year with MCTD. Finding information about the disorder has been a challenge. While more information seems to be coming available daily, knowing where to go from what information has been quite frustrating. I think your explanation of what one encounters when they have MCTD is extremely helpful and I appreciate your willingness to share. I wish you and your family the best.

  10. Angie 11/11/2015 at 1:44 pm

    I am soooo glad I found you and your website…I was just diagnosed with this and I agree with a lot the other comments on here….Felt like I was reading about myself…I, too, am a fellow Texan…So this is all new to me, and so it frustrating…You see, I am already struggling with chronic pancreatitis, and Bipolar disorder grrrr….So, of course, I was thinking one more thing wrong with me! What did I do in a past life?!? 🙁 but it is what it is…
    I try to stay active by exercising 3-5 days a week…I have to keep moving, and of course, TAKE my meds…
    I have been a stay at home mom for 19 years, (oldest son is away at college and we have a senior at home) so I don’t have ‘time’ to be sick…lol…plus who can afford both…haha.. But all in all seriousness I have a great hubby and my kids and in-laws and therapist, trainer, friends,
    and doctors and that won’t let me give up or give up on me….because there are days where I want to feel sorry for myself, but I remember a saying my son texted me, and it gets me thru some of the toughtest and it is
    ‘God gives is hardest battles to his strongest soldiers!!’
    Sorry for such long comment….:/ But just reading your article, we have a lot in common!! I love your attitude!! Rock on my fellow, Texan!!
    ‘sides, we all can be a lil flaky!! <3

  11. Rebecca 11/09/2015 at 12:01 pm

    I was diagnosed with MCTD in January 2008. I have all the same symptoms as you. I also work from home, full-time, and I am a mother – of a 4 year old boy. I am so tired by the end of the day, that sometimes I end up crying in the bathroom. Every day is a struggle, and I literally feel sick to my stomach. I take pain medication just to sleep at night. The saddest part of it is that there is no end in sight. Anyway, thanks for posting your article. Sometimes I feel so alone.

  12. Melanie johnston 09/13/2015 at 10:29 pm

    My dad delt with this disease for 10 years,it started with aches and pains and slowly got worse and progressed into the different symptoms as time went on.He suffered from arthritis,raynauds,carpal tunnel and scleroderma.It affected his whole being and lifestyle.He was on so many different medications over the time.He eventually had to give up work because he physically could not do it anymore,he was a builder.His life turned into appointments and seeing how he felt from day to day.He ended up on dialysis that he had 3 times a wk for 4 hrs.I lost my dad in November 2014 suddenly,he was 58.What he went through,i would not wish on anyones worst enemy

  13. Brittany Ducote 09/09/2015 at 9:26 pm

    I just found your site and it was like I was reading all about me. I was recently diagnosed with Mctd and though I’m quite scared, I’m happy they finally figured it out. Took almost 5 years to find out what was wrong with me. I’m a 32 year d mama with 3 kids & I work from home. I try to explain to family & friends what I have but most the time they have no clue what I’m talking about. It’s so comforting to know I’m not alone. My biggest fear is that I won’t see my kids grow up because my symptoms are progressively getting worse in a short period of time. Have you ever dealt with that before? I would love to get your input on how you cope with it. Thank you!!!

  14. Wendy 12/09/2014 at 12:02 pm

    I just found your site on Pinterest. My daughter is only 24, and suffers from Raynauds. She is a hairdresser, and people comment on her hands, which causes embarrassment for her. I want to buy her extra warm gloves, and have read varying reviews of what is available. Have you found a great glove?

  15. Christine 12/27/2013 at 9:22 pm

    Thank you so much for the information I have been dealing with mix connective tissue disease for 2 years now and it has been very hard for me. I am thinking postive and staying strong

  16. Claire 03/08/2013 at 10:40 am

    Hi Jenny,
    My name is Claire and I was diagnosed a year ago with MCTD. Loved finding your blog – also knowing your in the Houston area helps!

    Can you tell me who your dr is? I have been working with a rheumatologist, but am not 100% happy with his bed side manner.

    Thanks for any help or advise you can provide.

    Claire

  17. Laura 02/21/2013 at 5:14 pm

    Love your explanation of MCTD. I was diagnosed last year. It’s been a roller coaster of a ride but I feel truly blessed to be alive. I live in west Texas and its nice to know I am not alone in this!

  18. Mari 01/31/2012 at 7:21 pm

    Thank you for good explanation on what MCTD is. I don’t know much about it. I have also MCTD and got the diagnose spring 2011. In a strange way is it good to hear about other that have the same diagnose. Take care.

  19. Jen 11/11/2011 at 9:43 am

    Thanks for reading Carina! It’s hard to share our tough challenges, but it does help people to understand. I think a big part of why people with chronic illnesses don’t speak out is because we don’t want pity, but understanding is something everyone could use more of!

  20. Carina Wytiaz 11/11/2011 at 1:52 am

    Thank you so much for this explanation! A family member of mine has MCTD and Raynauds as well, and this is a great window into her experience.