About

I’m Nicole Richard, a 40 year old woman living with MCTD. I was diagnosed in August of 2003 and for the last 9 years have been fighting the disease in order to have a long, healthy, balanced life. Me versus MCTD is my journey and although I’m still on this journey I want to share my story with others that have MCTD.

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51 thoughts on “About

  1. Kathleen January 21, 2012 at 6:55 am Reply

    Hi Nicole,

    I just stumbled across your blog while on a burst of searching for new information on MCTD. I periodically get really fed up with taking prednisone and want to find other more natural things to take/do.

    I’m 24 and was diagnosed with MCTD when I was 19. I noticed join stiffness and pain after a bike ride, I used to do a lot of long distance rides. When the pain wouldn’t go away, when it got worse, I finally went to the first of many doctors to figure out what was going on. The first on thought it was gout, the second thought lupus, the third said it was not MCTD and started treating me for Lyme’s Disease (which made no sense to me) and finally the rheumatologist I see now diagnosed me. He went through the symptoms and it all made sense. My symptoms were mostly join pain, especially in my wrists and knees, and Raynauds.

    Anyway, I’m really excited to have found your blog. I feel like nobody has ever heard of MCTD and that they think I’m making it up.

    If you have any advice on diet or vitamins that you’ve tried that have helped you, please let me know. I’ve been taking prednisone majority of the time since 2006. I’m so sick of it–and I get worried because in the future I want to have a family and I worry about complications. I take Omega-3 Fish Oil with Glucosamine and that definitely helps, but I can’t just take that and the anti-inflammatories. Any advice is greatly appreciated. =)

    Thanks!
    Kathleen

    • mevsmctd January 22, 2012 at 12:53 am Reply

      Kathleen
      There aren’t many things I haven’t tried over the years. Since joint pain and swelling is my main symptom I find that daily activity, weekly physical therapy and almost daily yoga are my best recourses right now. I certainly feel better when I eat good balanced foods and read a great book called the Anti-inflammatory diet which I blogged about as well. Anything you and your doctor deem worthy of trying is a good start. Somethings are doing you well even if you can’t tell hence your omega 3. Day to day you might not feel the affects but they are helping. You are smart to look at other alternatives and keep trying new things. Something will click with you and when it does stick with it. I wish you the very best.

  2. Jennifer April 20, 2012 at 4:43 pm Reply

    Hi Nicole! I nominated you for the Liebster Blogger Award! See my post at
    http://flowtationdevices.com/2012/04/20/the-friday-5-award-edition/ for all the details. I’m glad I found your blog and enjoy being a reader!
    ~Jennifer

    • mevsmctd April 20, 2012 at 8:14 pm Reply

      Jennifer Thank you so much!  That is so wonderful of you to think enough of my writing to add me.  I really appreciate it!!   Nicole

      • Jennifer April 21, 2012 at 1:50 pm

        You’re welcome! I think it’s good to hear the perspectives of those with various injuries/illnesses/conditions as a reminder that we never know what the person standing next to us in the yoga studio is dealing with.

  3. Karen Holson April 30, 2012 at 2:02 am Reply

    Hi Nicole,

    It’s nice to know that I am not alone with this crazy disease. I was diagnosed about 15 years ago with Dermatomyositis,although to be fair, I never really fit that diagnosis perfectly. I have been told that I have atypical Dermatomyositis without the myosotis…basically a MCTD. I have been treated at Yale by a great team of docs, but as my WBC count went down, so I could no longer take Plaquenil. I had been on Plaquenil for about 10 years..great drug. So now, I am about to turn 52, and have really tried it all. I think one of the best things I have done to manage my MCTD is to be treated by a PT who does integrated manual therapy on me once a week, exercise, have massages, and try to think positive. I have been lucky for the past 10 years. However, I am having a big flare right now. I am on Prednisone (first time in 15 years) and am getting ready to go on Methotrexate this week. They will wean me off the Prednisone once it kicks in….because I have osteoporosis. I also have Reynauds. My hands are swollen, red, stiff, and sore. My bottom of my right foot feta sore, my elbows have a very red rash, and my neck is very stiff and sore. Have you heard of anyone else taking Methotrexate? Or are your symptoms similar to mine? When I was going through all of this 15 years ago, the doctors really thought I was nuts!!

    Best,
    Karen

    • mevsmctd April 30, 2012 at 8:50 am Reply

      Hello Katen
      Thank you for reading my blog. First, I’m envious that you haven’t taken prednisone in 15 years and hope you get off of it quickly again. Our symptoms are so very closely related and often wonder what the next 10 years will look for me so thank you for telling me your story.

      In regards to methotrexate I know it works for most people and realize I will probably be on it at some point. I like hearing that pt works and will continue.

      I wish you all the best in your journey.

      • Dawn July 5, 2012 at 10:29 pm

        I too have MCTD. Like others have commented I don’t hear of people having this. I have done alot of reading but it is definately exciting to find out that I am not crazy with my symptoms. I have been on Methotrexate for a couple of years and it has been very beneficial without too many side effects. I do continue to have flares and have alot of trouble with my hands painfully swelling and massive fatigue, and very active Reynauds. I occassionally have to take prednisone but I do not like the effects. Do you ever hear of people also having alot of muscle weakness in their legs as well? Also, where do you find the book about anti-inflammatory diets you have been talking about? Is it helpful? I am eager to hear more. Thanks

      • mevsmctd July 6, 2012 at 3:31 pm

        Dawn
        Thank you for reading and commenting. This is a place to share what we go through on a daily basis. As far as muscle weakness, yes this is a symptom that many peopl deal with and what you have to keep in mind is that our bodies build muscle a lot slower then other people’s but we also lose our muscle a lot faster. The best way is to do a little something every day to keep our muscles strong.
        If I weight train hard my body flares during recovery so if you can train hard great and if not then do what you can every day.
        The books I read come from all kinds of sources. I love the magazine Prevention and get a lot of reading ideas from there. I search the library religously for new ideas and I hear from my doctors and physical therapist about what is new and what I should be reading.
        Recently I have gotten a lot of ideas about books from podcasts I have been listening to and I enjoyed a lovely day at the book store yesterday so I have 3 books I’ll be reading and blogging about soon.
        Keep tuning in and please chime in anytime if you have ideas for combatting MCTD.

    • andrea July 7, 2015 at 3:31 pm Reply

      HI, I have been on methotrexate for 8 weeks now. I notice I am ablet to slightly less prednisone, but no real improvement yet. Just heartburn and some stomach upset.
      Good luck!

      • mevsmctd July 7, 2015 at 6:09 pm

        Hello Andrea
        Thank you for taking the time to read my blog and write to me. It can take quite a few weeks before you are sure a medication will work for you so don’t get frustrated but if you don’t see the changes you expect you can always talk to your doctor and try something new. Many people with MCTD have good luck with Methotrexate so perhaps you are one of them. The management process is the biggest part of living with MCTD so hang in there and hopefully you will see some improvements soon. Continue to write to tell me your progress.

        Nicole

  4. Kathie November 24, 2012 at 12:14 pm Reply

    Hello Nicole,
    I just stumbled upon your blog this morning while doing a web search for any information I can find on this condition, having just been diagnosed on Wednesday. While I have found some sites with general information, what I’m coming to realize is that there really isn’t a lot of in depth stuff out there. It seems like most of what I’m coming across references that it’s “rare” and that the symptoms mirror Lupus, RA and scleroderma – I just had more labs run yesterday and have started Plaquenil. We’re holding off on the steroids until all of the labs are back and an echocardiogram is completed.
    As someone who has been living with this condition, can you tell me if you have had any neurological manifestions? When I asked my Rheumatologist about things like short term memory loss, confusion, etc., he said that while it’s possible that these can be attributed to MCTD, and are common with systemic lupus, he wasn’t aware of any studies regarding the frequency of it in people with MCTD. While I finally sought treatment for the painful swelling and weakness in my knees which was making it difficult to walk sometimes, the neurological symptoms are really the ones that alarm me the most. If you’ve ever experienced anything like that, I would be grateful to know.
    Wishing you the best.
    Kathie

    • mevsmctd November 25, 2012 at 10:55 pm Reply

      Kathie
      First, thank you for taking time to read my blog. Being newly diagnosed must have your brain filled with so many questions. The internet is a wonderful place to get information but it can be extremely overwhelming. There is some really good information out there and you have lots of researching to do. The common thread is that this is a rare disease because lumped into the umbrella of autoimmune there are few of us with MCTD but this is also an overlapping disease and very few of us will stay in the MCTD category They put us here temporarily until Lupus symptoms crop up or RA symptoms or any other symptom comes up that moves us out of MCTD or UCTD into a more common category. With that said, your neurological issues may be linked to something else not related to MCTD and they just haven’t found a category for that yet.
      Now brain fog is something I deal with and mostly I have a hard time focusing or I can’t find the words to say out loud even though my brain knows exactly what to say. My speech slows way down and I don’t even realize I’m doing it until someone who knows me very well points out I must be having some brain fog. Typically my husband and family can recognize it at this point.
      This happens when I’m very tired or just coming out of a flare and will last only a few hours or a day at most. I can help the brain fog by resting and staying really hydrated. If there are certain things that happen to you that you think your doctor should know to better analyze your situation start a journal and on your next appointment go over it with your doctor. I started a journal several years ago when my doctor would ask me how many flares I was having per month and honestly I couldn’t remember or he would ask if my swelling was worse during certain times of year or was any of this related to food? A journal helps me keep track of each day and see signs and triggers and patterns in my flares or just in the way I feel. I highly recommend this for someone just starting their journey with MCTD. Don’t be afraid of being afraid, you are allowed to be fearful of an unknown future but taking steps now will help make that future brighter and easier with each passing day.
      Good luck to you and never stop searching for the answers to your questions.

  5. Autumn December 29, 2012 at 2:22 am Reply

    Thank you for your blog. Although I have not been officially diagnosed, I see doc for follow up on Thursday, after my lab results I’m sure I have MCTD. Positive ANA with positive RNP only and symptoms similar to yours. Mine started after I had our 3rd child 3 years ago. Winters have been the worst. Every year it gets worse and gluten makes me feel awful so I’ve cut it out. I’ve developed anxiety disorder as a result of my flares when I didn’t know what was wrong with me. I also have neurological symptoms but those wènt away when I started on high doses of Vit D at the direction of my doc. Stress reduction helps those too. For the most part I feel fine in the summer but when the cold weather sets in the fall everything comes back. Stiff neck, burning shoulder pain, creeping and cracking joints, nausea, brain fog, fatigue, tremors….and on and on. I eat whole foods as much as I can. I cut back on dairy and sugar and I’m 100% gluten free. Yoga is very helpful and now I’m thinking about getting back in to running. I will try the weight bearing exercise too. Thanks so much!

    • mevsmctd December 29, 2012 at 5:30 pm Reply

      Autumn
      Thank you for taking the time to read my blog. When I started this blog I felt like I was the only one with MCTD but knew there were others out there just like me. I have come to realize that although they still refer to MCTD as a rare disease unfortunately our numbers are growing. Being from Maine I’m very well aware of how winter effects this diseas and I wish you comfort in the winter months to come. This is a journey of small steps every day and the very idea you are you thinking about running and weight training is very encouraging. You should be very proud of yourself and take this journey one day at a time. I wish you well.

      Nicole

  6. Mary Napier January 6, 2013 at 4:02 pm Reply

    Hi Nicole,
    Thank you so much for having this blog! I am fifty years old and have been struggling for about five years with joint pain, fatigue and general feeling of un-wellness. Last year my hands started swelling and I became an artist that can’t hold a paint brush or cut glass! I was sent to a rheumatologist and she finally did a ton of x-rays and blood work. I am happy to have a diagnosis, however, I feel oddly alone in this. The plaquenil is great and has helped significantly , I have only been on prednisone once in the last two months. My body is trying so hard to flare but It’s only lasting a day or two instead of weeks like it use to. I think my biggest immediate concern is my mental fog I seem to live in. It has gotten worse, I can’t seem to chose the correct words to say, I prepare for the wrong classes I teach, I forgot to put the ham in the oven for Christmas eve dinner!!! My body hurts constantly, the stairs seem almost unmanageable somedays. I came across your blog while trying to find alternative treatments. I have started yoga, I have to say it absolutely brings me to tears, my neck, knees,hip,shoulder,wrists and feet do not want to move. I have committed myself to thirty days of it. I have also turned to a mostly clean diet, I think I will try the gluten free as well. Thank you for letting me vent about my discomfort. I really am a positive person, but sometimes this really brings me down. It’s comforting to write to someone who understands. Thank you again!
    Mary

    • mevsmctd January 6, 2013 at 4:23 pm Reply

      Mary
      Thank you for reaching out with your story. Unfortunately, our stories are all too similar when it comes to joint pain. If you have been reading my blog for any length of time you know I’m a huge advocate for yoga. However, I am also very well aware of the limitation of our MCTD bodies and I’m cautious to advise people when I’m not a doctor or therapist or trainer but a typical yoga class can be challenging for anyone and then you add your situation then perhaps it isn’t the right mix yet. If there is alot of pain in your small joint areas then downward facing dog can feel like torture and not the resting pose it is designed to be. On days when things really hurt restorative yoga can be very good, you are using cushions and blankets and opening up the hip area, releasing the lower back area, stretching the knees gently and loosening up your body.
      Brain fog is very frustrating and trying to find the words can seem impossible. This happens to me when I’m dealing with high levels of fatigue and I literally just stop and rest. I realize that our daily lives don’t always allow us the time we need for rest but the more we fit it in the better we will be in the long run. I’m not sure if you like to read or have time to read but Wheat Belly by Dr William Davis talks about what gluten can do to our bodies and brains and perhaps if you did cut out wheat completely that might be enough to help with your brain fog. I believe it also comes as an audible book if you perfer listening.
      My hope for you is that you find your artist hands again and do what you enjoy doing.
      Nicole

  7. Barbara N August 20, 2013 at 11:16 pm Reply

    Hi Nicole,
    For the past two years I have had many health issues. The trouble began with the hands and feet. They would go numb, tingle and were extremely painful. Then the symptoms went to my elbows. I began having issues with swallowing and constipation. While I have been diagnosed with IBS since the age of 24, I have never experienced this type of constipation. Severe headaches soon followed and every joint and muscle would hurt. My feet would turn purple. Fast forward to many doctor and er visits in the town I live and no body could figure out what was wrong with me. I waited until the end of school year to go to the Mayo Clinic. (I had no more sick days and was being docked). I am single and live alone. The Mayo Clinic ran so many tests I felt like a lab rat. The only significant thing they found was an elevated RNP. I was also anemic. They mentioned MCTD but said they are hesitant to diagnose that because I had not witnessed Raynauds. My hands do change colors but at that point I had never experienced the full blown white color of the hand.
    Fast forward to now. I have drastically changed my diet. I was put on Cymbalta. Over the counter acid reflux medication. I can not take any a) ibuprofen due to having esophageal ulcers before, b) steroids because of mental issues and c) absolutely no narcotics due to being a recovering addict.

    * I left the Mayo Clinic due to money issues and the fact that a doctor insisted I would be okay with Percocet. After that visit I never went back.

    I now have an esophageal yeast infection.

    Is that common with MCTD?
    I am desperately searching for some direction in how to look for a doctor in my hometown.

    Hopeful for some insight,
    Barbara

    • mevsmctd August 21, 2013 at 10:12 am Reply

      Barbara
      Thank you for taking the time to read my blog and write to me. I must let you know upfront I’m not a doctor and write this blog based on my journey only but I take living with MCTD very seriously and I will always do what I can for my readers. I did some research on esophageal yeast infection and although this is not a typical symptom of MCTD, (but really are there any typical one) esophageal issues are common with MCTD which is why so many patients have reflux or GERD and many of us have a reoccurring sore throat. Some people who take prednisone at high dosages will get frequent yeast infections of the mouth or other areas but it doesn’t sound like from your story above that you are currently on medications. The tough thing about MCTD is that it is an autoimmune that can effect many parts of the body so what one person is dealing with can be very different than what another person is dealing with. I find it interesting that they couldn’t give you a clear diagnosis because you weren’t experiencing Raynaud’s as I haven’t found anything that says Raynaud’s is the clear winner of the MCTD diagnosis.
      Don’t give up on your testing and treatment. I know you feel “like a lab rat” but autoimmune is such a tricky area and unfortunately it can take people many years to get their precise diagnosis so it is important to find a doctor you like and trust and especially a rheumatologist and start the process. I empathize with you not having time but your health is so important. It might be a long road and I wish you the best of luck on your journey.

      Nicole

  8. Jack September 29, 2013 at 1:08 am Reply

    HI I am Jack, I have not actually been diagnosed yet however I am sure that MCTD is going to be correct. I have experienced everything everyone is talking about. What I wonder is how do you people work/function? I have been sick Daily for 3 years now. Just this past April I let my career go because I could not keep appointments and get my work done in a timely fashion. I have been on the plaquinal but had to stop it after taking it for a number of months because it always made me so sick….for 5 or 6 hours. The VA kinda dropped the ball on getting me diagnosed and now I can’t get disability, or an attorney to fight disability because I am not diagnosed. Who knows how long it will take to even get my next appointment in Ann Arbor for the diagnosis but in the mean time I can’t hold a job……..I don’t have a clue as to how I am going to be until the day comes. Very few good days but more then I had the past couple of years. Thanks for sharing everyone. Nice to know I am not alone!

    • mevsmctd September 29, 2013 at 3:29 pm Reply

      Jack
      Thank you for taking the time to share your story. It is quite a journey you are on and from the sounds of it a very challenging one. I have fortunately been able to work almost every day for the last 10 years of my diagnosis but I’m sure there are others reading this that may be in your same situation and if they have ideas for you they can express them here. I do know that for me fatigue is something that comes and goes frequently and on days when I’m feeling most fatigue are the days I do what has to get done and put the rest to the side. I don’t have children and I have a very supportive husband so things that typically have to get done are related to my job. I spend a lot of time just walking on those days and don’t incorporate much more in the form of exercise. I also do gentle yoga and just try to keep in mind that a new day is quickly approaching. Also, when I have a flare they are quick so being in bed is something that only happens very rarely for me. You don’t necessarily have to get a diagnosis to start the healing process and perhaps starting with some physical therapy might help, or find a yoga studio that will take the time to help you get into comforting postures. If you are able to walk, I highly recommend it. It is amazing for your joints, your mind, and energy level. You may want to check out some autoimmune protocols on line. The author of Practical Paleo talks about autoimmune protocols in her book as well as on her website balancedbites.com and see if there are things you might be interested in trying. Medications will help once you find your balance and everyone is different when it comes to medications so make sure you work with a doctor you trust as this is a long road. I wish you the best of luck.

      Nicole

  9. Jack September 30, 2013 at 11:01 pm Reply

    Thanks Nicole, if it costs money I can’t do a thing right now, I am flat broke….busted~ walking is about the only form of excercise I have been able to really do. This year, when I have a good day it is better then past years good days and I am thinking I might be able to start more excercising. This is the first I have felt this way (on a good day) so it must be time to start getting back into shape. I have found that pills and I do not get along well. I take the lowest possible blood pressure dose to keep me under control (somewhat) and they still make me sick for an hour or two or even all day if I am already having a bad day (they seem to worsen the effects). I am going down hill very very fast and it really is all because I have not made a dime since April. The only thing I have not been denied for is food stamps. I have no say in my doctor because I can’t afford one and have to go through the VA. They don’t really seem to even know who I am when I go there. I can tell NONE of the many doctors I have had ever read my past and never knew a damn thing about me when I went there. I never have the same doctor more then a couple of times and actually, I don’t really ever see any doctors….its always a nurse! I finally demanded a doctor that would care about me and know what he was doing. I went 8 months without even seeing the NEW doctor and then was told he took a new position and wasn’t going to be my doctor. I got soooo mad and loud about it they finally had him see me on a special appointment. I go back for a follow up on the 11th but I am not so sure I will ever see him again after that. Nothing is easy in my life right now HOWEVER I am a very positive person who trys to find the good in everything and believe it or not…..I KNOW there is something good coming from all this, I just don’t know when or how. I do have a plan so if I ever get ANY amount of income I will be able to adjust that and live within my means and have a dream come true while doing so. I’ll have to let you know if it all works out when the time comes. For now though, I can’t seem to find the good in not making a dime and letting my career go! I suppose it makes me much more humble and that is not a bad thing! People may be afraid to admit it on here but I am not (even though I am not legal to do so yet) but I am wondering how many smoke pot? I do and it really seems to help with the pain and appetite however I will say on my “brain fog” type days it seems to make my fog much thicker! What do others have to say about that for a med? I get no side effects from it that I am aware of but it costs to get the card (cause you can’t through VA) and it is very expensive if you can’t grow your own.

  10. Kim November 30, 2013 at 4:11 pm Reply

    Nicole,

    Thanks so much for taking time to share your experience and to lend advice and support to so many others experiencing this frustrating illness. I too have been on a very long journey trying to regain my health. MCTD is one of my diagnoses — with blood work and symptoms pointing to that for well over a decade. (Oddly, it has only been recently that I have began seeing information specific to it on the internet). I have also been diagnosed with Fibromyalgia. But my health really tanked when I contracted LYME disease a several years ago. I’ve been treated with antibiotics on and off for the past two years and they made a dramatic improvement in my neurological symptoms, but I was still left with an array of lingering life-interupting symptoms — joint and muscle pain, brain fog, chronic fatigue, Raynauds … (minus the Raynaud’s, all symptoms that suggest “chronic LYME”). So, I sought help from an “Integrative MD” who is well versed with LYME. He took a look at all my prior treatments and lab work and scratched his head and said “You should be well by now, so there must be something taxing your immune system … let’s figure it out”. I think I probably cried happy tears at that point. (Sadly, I feel too few people hear an MD actually say those words — I had spent years being dismissed and or being told that I just needed anti-depressants). He began by having me go on a very restrictive diet — primarily avoiding sugar, grains, dairy and meats. I stuck to this diet religiously for two weeks. 5 days into it I started feeling better than I had felt in 10 years. By week two, ALL pain was completely gone. My head was clear. The swelling in my fingers went away leaving my hands looking like I had not seen them since I was a teenager! I had people tell me I looked “radiant”, it was that dramatic of a change. My doc decided to run some food allergy blood testing and it revealed that I had low grade allergies to dairy, wheat and egg whites (and a few other things that were not regularly in my diet). While I feel like we stumbled onto the “cure”, I can’t profess to have stuck to this elimination diet 100%, so my symptoms wax and wane … I suspect in response to eating offending foods. However, the dramatic reduction in ALL symptoms on the elimination diet was so compelling that I have spent countless hours researching the connections and also trying to figure out how to identify my specific triggers and incorporate a workable change in my eating patterns. There is tons out there on this subject — most point to gluten and dairy … but others suspect the over abundance of all processed grains in our diets. I share this with you because NONE of the Rheumatologists and other conventional specialists that I have been to see put any emphasis on diet — it’s as if it was absent from their medical training. I feel like we have to be our own lab rats, so to speak … and I had such absolutely compelling proof that what I am putting into my body is, in fact, linked to my inflammatory issues. In addition, in the case of both of my “diagnoses” — MCTD and Fibromyalgia — they are “CAUSE UNKNOWN”. It is possible that all of us experiencing this condition have developed an autoimmune response to a particular food or foods — it’s just nearly impossible to prove that in a conventional scientific study. I’ve heard countless stories of total transformation in symptoms when folks have followed a restrictive diet — The Whole 30 — The Anti-Infammatory — The Paleo — etc. There are some good documentaries you can rent on Netflix — “Forks Over Knives” and “Food Matters” do a nice job supporting the food-autoimmune connection. It’s possible our “cure” is actually in our control with every food choice we make.

    I would love to hear if anyone with MCTD has experienced a similar connection, and if you’ve narrowed it down to a specific offender.

    • mevsmctd November 30, 2013 at 5:49 pm Reply

      Kim
      Thank you for taking the time to read my blog and write to tell me your story. There are other readers that have benefited from some sort of elimination diet including myself. Elimination diets are very powerful but I don’t underestimate the amount of time it truly takes to identify what food are real triggers. I have been living with and managing MCTD for 10 years now and it takes some time to figure it out. Besides this blog I keep a daily journal because I have learned that what I did 3 days ago can affect me today and without a real journal of my daily eating, sleeping, activities and supplements I can’t stay on top if it. My Rheumy will ask me how long since my last flare and without my journal I would only be guessing but with it I know I have gone 152 days without a flare as of today. Perhaps a journal of that sort would benefit you as well.

      There are many medications that many of us will try and stay on long term but nothing is more important than food in long term health, therefore, I wish you happy eating and good luck in your journey.

      Nicole

  11. Eyanne December 16, 2013 at 4:59 am Reply

    Dear Nicole,

    Thank you so much for sharing your journey and your stories with us. I’m 29, and have been diagnosed with MCTD when I was 27. I have been struggling on and off with this disease, as you probably know, it’s so much more difficult when you’re flaring. My symptoms are mainly joint pains (fingers, wrists, elbows, and shoulders predominantly), bad rash on my face and severe alopecia. In the last two years, I have had three serious flares (once had to be hospitalised because of severe liver problems) and I have not had a flare for 179 days. I’m managed with a low dose of prednisolone, in addition to Plaquenil and Immuran, and 3000mg of Vit D due to developing severe osteoporosis with MCTD.

    At first I thought I will cope really well with MCTD being that I survived Non-Hodgkin’s T-Cell Lymphoma when I was 22. Surprisingly…I found coping with MCTD actually more difficult than coping with cancer. With my cancer, I just have to focus on the chemotherapy and nutrition and getting better, but with something as chronic as MCTD, I lost my way on how to cope. Family and friends seemed to think I should have no problem coping with MCTD seeing I battled and survived cancer, but it’s a different battlefield altogether, and even I myself can’t elaborate it very well.

    (Randomly…the doctors pondered with the idea of a mis-diagnosis when I was 22, but revisiting my biopsy results and comparing with 2011’s biopsy results…it was concluded that I unfortunately may be one of the more unluckier people, to contract two unusual diseases within a span of 5 years, and one to be chronic.)

    Your blog has been extremely helpful especially with coping with stress and the importance of exercise. You have kicked me into evaluating my exercise regime, which had really dropped off since I moved countries back in October. I used to gym daily (because out-door running is not an option…unless I want to run in the dark) but in my current location, the gym is a great distance away and I’ve been giving myself excuses. Your blog is a good reminder on how important diet and exercise is to managing MCTD. I have now resolved to wake up at 6AM, and do my run before the morning sun hits, and go to work after.

    Thank you again for sharing, and please keep sharing!

    • mevsmctd December 16, 2013 at 3:01 pm Reply

      Eyanne
      Thank you so much for taking the time to write me about your story. What a journey you are on and although you have your moments of struggle you must be doing something right in order to go 179 days without a flare. That is really saying something positive as many people find themselves in flare once a month or even more frequently. I’m happy to write and have people like you write me back with your stories. We each live with MCTD differently and although we are all lumped under the same diagnosis our symptoms are very different. I hope that you find peace in your journey and I hope that you continue to click away at non-flare days. If ever you find running is too hard on your already fragile joints, remember walking is just as grand! Take care

      Nicole

  12. Sharon May 23, 2014 at 11:39 pm Reply

    Hi,

    Symptoms for at least 10 years, just officially diagnosed. Doctor wants to start me on Gabapentin. Wondering if others have used this drug, similar to Lyrica.

    I am only looking for drug intervention if it is going to help stop the damage from the disease. From what I can find online it appears Gabapentin is only a pain reliever?

    Honestly, I would rather (and have been for years) deal with the pain and fatigue with diet, exercise, positive attitude and unwavering willpower. I have pushed through it all and it has not been easy but from my perspective – worth it to be drug free. I am not trying to sound like a superhero, or an idiot, just being honest. And tired of talking about it.

    Any info anyone could provide on medications that stop the damage would be much appreciated. The worsening symptoms is very worrisome and, now with a definitive diagnoses, I am willing to take medications if they will slow the disease progression.

    ~ s

    • mevsmctd May 24, 2014 at 9:45 am Reply

      Hello Sara
      Thank you for taking the time to write and ask your questions. Gabapentin is not a drug I am familiar with but maybe someone else reading has experience with it. There are so many drugs out there but if you trust your doctor and their recommendations then it might be worth a try. Damage to joints and bones can be very serious so you are smart to at least consider your possibilities. Good luck on your journey and keep me posted on your progress

      Nicole

  13. KIm May 24, 2014 at 4:38 pm Reply

    I found a really good cookbook that can be purchased in hardback from Amazon.com or downloaded from the Whole30’s website. It’s called The Autoimmune Paleo Cookbook by Mickey Trescott. The doctor does a good job of discussing some theories about how certain foods can trigger autoimmune response. It’s a complex issue from certain foods themselves being inflammatory to certain foods causing “leaky gut” and allowing particles to pass the digestive wall and settle into places that cause your body to launch an immune response. It’s really worth investigating if you experience any kind of digestive issues. Recipes are pretty good, too!

    I also have listened to some lectures by some top immunologists and I wanted to share a key piece in the journey to discovering which foods might be responsible for flare ups. Apparently, it can take up to 8 full days for an autoimmune response to occur (at the tail-end of the spectrum of allergic responses) which is why, as Nicole has mentioned, it’s really important to keep a food journal. I’ve already learned enough that when I cheat on foods that I suspect are issues, my arthritic joints will begin aching, sometimes within the same day. I guess I keep testing the theory every now and again because there are some foods I wish I didn’t have to avoid, but it’s becoming undeniable that they come with a price in the form of joint pain.

    Since diet and immune responses are so varied by individual, I think our best shot at good health is to be looking for the cause within each of us. If you ever hear the words “scientific evidence does not support …”, it doesn’t mean that it has been disproven. It could simply mean that there has not been any official studies done, or enough official studies done. Ask those questions before a doctor who is ignorant to the role of food leads you to believe that it is not potentially a key factor in your condition.

    If you chose to follow a protocol such as the one laid out in the cookbook that I mentioned, above … stick to it 100% for two weeks. By the end of week one, you will probably be so convinced that you won’t have a problem getting through week two. Two weeks could give your body a break from the inflammatory cycle and also give you the information you need to change your life : )

    Best wishes!

    • mevsmctd May 24, 2014 at 6:13 pm Reply

      Kim Thank you for taking the time to share what you have researched.  That book looks really interesting and probably very helpful when it comes to exploring a new way of eating.  The old adage is we can do anything for 2 weeks so why not this?? I will explore this book as well and thank you again for sharing.  

      Nicole

      ________________________________

      • Beverly July 8, 2014 at 4:34 pm

        I have no clue how to use a blog or “enter” one. I am no on facebook or any social media. Diagnosed January this year, I’m 70. I also have, for the past 18 months, CONSTANT pulsing in my head (not ears) to the beat of my heart. Does anyone have or have heard of that being connected to our “joint” disease of CTD. Thank you – I hope you can respond with the e mail I just entered

      • mevsmctd July 8, 2014 at 5:51 pm

        Hello Beverly
        Thank you for taking the time to read my blog and write to me about your situation. Although I am not familiar with your symptoms I believe another reader Kathie may be more helpful so if she is reading this and wants to reach out to you I will put you two in touch. Unfortunately this blog is not an open forum, only because I don’t know how to set it up as such. I understand if social media is not area of expertise but there are some great books out there you might find beneficial such as Living Well with Autoimmune Disease and The Paleo Approach: Reverse Autoimmune Disease. Take care and I wish you luck in your journey.

        Nicole

  14. pat July 24, 2014 at 1:54 am Reply

    Tentatively got the diagnosis today (not final, but….) . This blog put a smile on my face. If you can live this well and be happy, i am gonna too. Thank you.

    • mevsmctd July 24, 2014 at 7:26 pm Reply

      Hi Pat
      Thank you for taking the time to write. In the early stages of diagnosis it can be a little frustrating while your doctors pinpoint your autoimmune disease. As long as you trust your doctors and communicate it gets easier. Every day will feel different and you will find your own path in your journey but today I’m glad I made you smile. Good luck to you

      Nicole

  15. Colleen Pierskalla July 28, 2014 at 1:36 am Reply

    not sure why I am here…I keep telling my self I am fine. There are people far worse off than me. I hate that this disease defines me at times. I was diagnosed with MCTD 6 years ago- felt horrible, hair was falling out, tired and sore all the time. I had just lost about 50 pounds so everyone said I was making myself sick. One doc told me I was depressed and should see a therapist. I have felt like a human pincushion. Today I was wondering why I have been feeling the need to put my head down so often- not sleeping well-head fullness- ear ringing- swollen ankles-canker sores-diarrhea-ALL OF THIS FOR ALMOST 2 MONTHS STRAIGHT! I do not want to go in so they can run a few more tests:{ I have been on Plaquenil which has been fine but the other drugs they have me experimenting with over the years were not good. Knowing I should not look for answers on the internet never stops me and today I am glad it didn’t. I found your blog! I do not have not answers to why I have been feeling so cruddy except that I may have another layer to my disease BUT I do have a resource of real people with similar angst about being diagnosed with MCTD.
    Thanks!
    Colleen

    • mevsmctd July 28, 2014 at 2:02 pm Reply

      Colleen
      Thank you for taking the time to read my blog and write about your own story. It sounds like your journey has you a bit frustrated and maybe even a little tired so on the days that you are feeling good take full advantage of that and remember to enjoy life. There are so many different layers to MCTD and the symptoms can be so different from person to person but having a team of doctors, family, physical therapists and anyone else that you need will help you find the right management plan for you. Since everyone is so different it can take a long time to find the right plan which is probably why they are “experimenting” as you say but once you find the right combination and have the team to support you, you will find your way. I know from experience that this disease is complicated but we have to figure out how to live with it and make it fit into the life we want. Easier said than done at the beginning but as I remind myself all the time, I have nothing but time to figure this out and make it work for me. You will too and knowing you are not alone will hopefully help. I truly hope you find peace while you look for the answers to your never-ending list of questions.

      Nicole

  16. DailyJuniorDogBlog August 18, 2014 at 4:36 pm Reply

    Your blog is so helpful. I have Undifferentiated Connective Tissue Disease. Found out 2 years ago.But the diagnosis seems to be a moving target.

    I struggle with Prednisone. Its a real love /hate relationship.

    Thanks for your blog
    Jill

    • mevsmctd August 18, 2014 at 5:23 pm Reply

      Jill
      Thank you for taking the time to read my blog. I could not agree with you more on both accounts. Autoimmune is a moving target since none of us react the same symptoms, medications and treatments and yes, prednisone is the love hate drug for most people. They call it a cure-all for a reason because it is typically prescribed for just about anything and although it makes us feel better it is miserable to live with. I have been on prednisone for 11 years now and have tried countless times to decrease (not eliminate, but decrease) I get to about 4.5 and flare and now that I have been at 410 days without a flare I’m actually torn between trying again to reduce or just leave things alone and enjoy the flare-less ride of life. It has always been my goal to get off of prednisone but to what consequence?

      Keep loving and hating your medications as they can stablize you when you find the right mix and never stop striving to reduce them completely!! Good luck in your journey.

      Nicole

  17. melzgroovin September 17, 2014 at 6:06 am Reply

    I have read many of the entries posted above. My daughter was diagnosed with Mixed Connective Tissue Disease for the last 7 years, and last month we found out that for all those years she has been misdiagnosed; she actually has Lyme Disease caused by the bacteria Borrelia burgdorferi. We live in CA, where many doctors believe Lyme hardly exists. As I have read many of the symptoms listed in the posts above, they are many the same symptoms as Lyme Disease. They call Lyme the great imitator since it mimics about 350 different diseases. Most doctors are Lyme illiterate. From the time my daughter got sick, I asked EVERY doctor and specialist she saw if this could be Lyme and they emphatically all said no. When I insisted they test her anyway, they used the ELISA test which came back negative. The 2 tests the CDC recommends for detecting of Lyme is the Western Blot, which is purported to be only 44% accurate, and the ELISA about 30-40% accurate in diagnosing Lyme. Here all these years later, after a phenomenal amount of suffering on my daughter’s part and total loss of her quality of life, I was correct. Had the doctors been educated on Lyme and caught it right away, the long-term impacts of this disease on my daughter’s internal organs would have been hugely minimized. Fifty percent of people with Lyme will never get the telltale bulls-eye rash, and the disease manifests differently from person to person. I would encourage you all to find a Lyme literate doctor and rule out Lyme – a doctor who practices Functional Medicine (also a graduate of UC Davis Medical School) suspected Lyme when we changed my daughter’s primary care physician. That was one of the best decisions I’ve ever made.

    Here are the symptoms of Lyme Disease:

    http://www.lymediseaseassociation.org/images/NewDirectory/Resources/Printables/SymptomList_2013.pdf

    Certainly not every case is like my daughter’s, but the incidence of Lyme in many parts of the U.S. and Europe are almost pandemic in proportions. I hope that you will rule out Lyme as a possible culprit for whatever malady that has caused you distress.

    …And don’t just believe what you’re told just because the doctor “says so”.

    • mevsmctd September 17, 2014 at 12:40 pm Reply

      Thank you for writing about your daughter’s journey. I hope she finds peace in her new diagnosis.

      Nicole

  18. heather December 6, 2014 at 12:59 pm Reply

    Hi,
    MCTD, for being rare a lot of people seem to have it.
    it is like being given a diagnosis attatched to a roulette wheel,
    My journey started before I new it, approx mid 20s , over the years gave little hints until
    one day you wake up in pain (now 63)
    .Then the testing, and diagnosis.But reading the above messages, shows me that everyone
    is different.It seems you just have to take what ever comes and deal with it.
    I seem to find out more every day, have just learnt am vit d deficient , which also adds to the
    brain fog , anxiety etc. And like others try to get of prednisone but flare ups!!!! Plaquenil didnt work for me so went on methotrexate, which allowed the reduction of prednisone to 5mg,
    Now had to retire, but can function, am very proud of how you allhave dealt with your health issues, makes mine look like a pimple compared to what you have all gone and are going through.
    The support you give each other by talking and sharing is priceless.
    Heather from Australia.

    • mevsmctd December 6, 2014 at 1:38 pm Reply

      Heather
      Thank you for taking the time to read my blog and write about your own story. MCTD is rare and very different for each person which is why it can be difficult find the right management tools but with the right team you can certainly get to a good base line and manage the day to day changes. I believe in finding the right doctor to start your team and build that team with people that understand your disease or who are willing to learn and as a team you will be able to use different tools to make each day a little better. You will have bad days but that will allow you to enjoy the good ones even more. I wish you much success on your journey and hope that your flare ups decrease as you add more tools to your toolbox. Keep us posted on your progress.

      Nicole

      • Kimberly December 11, 2015 at 4:07 am

        Hi my name is kimberly I was diagnosed about 2 years ago I’m 37 years old with mctd. I was shulffled around to many specialists thinking I had so many things including lymphoma. But it was a great I’m cbc oncologist that diagnosed me and also said not to put me on any of those harsh drugs that suppress the immune system since they open you up to cancer and other illnesses. Since I have seen him I feel much better. I eat organic food and cut out whit flour and sugar which cause inflammation. I take d3. B12. Tumeric. Msm
        A good probiotic. Biotin. Everyday and it seems to work. I do get knee pain. Wrist pain. Eat wringing. But it is what it is right!! Ha! Oh well the cards we are dealt with..

      • mevsmctd December 11, 2015 at 1:44 pm

        Hello Kimberly
        Thank you for taking the time to read my blog and discuss your own story. I am thrilled for you that you have found a system that is working and hope you have great results long term. Feeling good and being healthy are so important and making health your full time is not easy but so worth it. Good luck on your journey

        Nicole

      • Heather Sullivan December 14, 2015 at 11:11 am

        Hi Kimberley and Nicole, I think I am finally at a place in time where the pain is managable, now I need to reduce my weight and see if that makes it even better, as I get breathless doing anything, Could be because of the excess weight. But that is another chapter, and so it goes on. I wish you both well thoughts, Merry Christmas Heather

      • mevsmctd December 15, 2015 at 9:47 pm

        Hello Heather
        I wish you well in your journey and getting the pain under control is a huge accomplishment so be easy on yourself with the weight issue. Maybe some walking to start to build up strength, and lung capacity. Walking is the very best exercise you can do and if stretching feels good after your walk try it. One step at a time literally and depending on what meds you might be taking they might also have an affect on your weight loss as well. keep in touch and Happy Holidays to you

        Nicole

  19. Jasmine Foss May 24, 2016 at 7:10 pm Reply

    Hi there, I found your blog while looking for info on weight training with MCTD. I’m two months into a lifting program, which is the first exercise I’ve ever LOVED, and even though I’ve been increasing weights gradually and responsibly I already have bruised shoulder bones (weightlifter’s shoulder) and I suspect my MCTD. I’m having trouble finding your past posts about lifting, which I think you mention? Do you still lift? Does anything help? Your flare ups sound very similar to mine but worse… sorry for rambling but I just don’t know anybody who gets it and I want info to help me stave these junky flare ups off in my future! I’m 28, got diagnosed a few years ago, went gluten free and that almost eliminated symptoms until recently..

    • mevsmctd May 26, 2016 at 2:20 pm Reply

      Hello Jasmine
      Thank you for taking the time to read my blog. It sounds like you are having amazing results with a gluten free diet. My MCTD results in weak muscles so I keep a regular weight training routine to ensure that my muscles do not become too weak. It took me a long time to be able to weight train and not flare as my body was healing it would go into flare. I believe the stronger I got and the better my eating and sleeping became my body was able to regulate the healing process without causing flare-ups. I have not experienced bruising but I do find that when my body isn’t fully strong enough my shoulders and elbows become the weakest parts of my body. I am very careful when I train those areas because I do so much yoga and I need strong shoulders and elbows. I work with a trainer and use bands when I’m not full strength and then full weights when I’m feeling fully strong. It is a balance and may take some time but you will find your balance. Good luck on your journey

      Nicole

  20. Amanda March 7, 2017 at 5:34 am Reply

    Hi I’m Amanda
    A year ago I was told I have connective tissue disease. I haven’t had anymore testing done to find out which one I have or if I have multiple. I have swelling in hands and feet pain real bad in my hands up to my shoulders. Truthfully I hurt all over. I have real bad dizziness spells. I have gerd. I’ve had that for 10 years now. I stay tired and feel like I’ve been hit with a Simi truck. I have nausea every time I eat. I’ve had my neck to swell to the point I couldn’t eat or drink without choking on it for 4 days. I have bad headaches everyday. I’ve lost over half my hair. I’m on anti-depression meds for my nerves. I feel like I’m going insane at times. This is not good for me cause I have two kids to take care of. One is autistic and the other has developmental delays. There is no stopping to take a break for myself. I don’t know what I’m going to do.

    • mevsmctd March 7, 2017 at 1:20 pm Reply

      Amanda
      My heart goes out to you and your family for the situation you find yourself in. There are no easy answers and when you don’t feel well all you want are answers, solutions, and help. With connective tissue diseases there are some many treatments to try and it can be hard to figure out where to begin. We are all so different and what works for one may not work for the next. My first piece of advice for you if you are willing is to take the time to find a doctor that you truly trust and feel comfortable with. This person is going to be a part of your team for the long haul and as you try different treatments either medically or alternatively you need someone that understands that your health is your main concern. From there you may need to build your team slowly, maybe add a dietitian who can help your gerd and stomach issues. It takes time and with a family you probably feel like you don’t have any time left. I don’t have children so I don’t want to pretend to know how you feel. There are other readers that very much know how you feel and perhaps they will reach out to as well. Dealing with an autoimmune disease is now a life long journey, with lots of ups and downs, feeling ok and then feeling terrible. Take it one step at a time and know you are not alone.

      Nicole

  21. Heather Sullivan March 9, 2017 at 7:28 am Reply

    Dear Amanda, My own exsperience is no where what you are coping with.
    Finding a doctor who believes and understands you is vatal.
    At 65yrs I thought I had come to the end of the road.
    But that is not so. Yu can keep going,find out what is happenning to your body, then do what is best foryou.
    Take care less
    Heather

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