Wednesday, May 22, 2019
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Kayleigh’s Fight Like A Girl Story (Mixed Connective Tissue Disease)

Well, for about half my life, I had been feeling a lot of joint pain. It mostly started with my knees at first. I thought maybe I had just injured them in some way. As time progressed I began having knee and back pain. I got older and began to gain weight, so that was the go-to reason for my pain for everyone (doctors, friends, family). People told me if I would just lose weight, everything would get better. I knew this couldn’t be the end all be all, sure my weight didn’t help, but I just couldn’t beleive my weight was the cause of
everything. But I just went on with life.

Well, recently (specifically almost right at the start of 2011), I began experiencing much more pain all at once. My back hurt, my wrists, knees, fingers, ankles, they all hurt. This wasn’t just any hurt, this was rather debilitating pain. I needed help getting up, walking, sitting, and I couldn’t even bend down or move far enough to lift the toilet lid for myself! Luckily, I had my fiance there to help me every step of the way. Eventually, enough was enough, I had to see a doctor.

The doctor has heard about my other mild pain before, but always dismissed it. This time, she finally opted for a blood test. Finally, people were supporting me and believed maybe something really was wrong. Me, my mom, and fiance waited patiently for my results. Then, on the lab work, there was something that showed I may be positive for Lupus. The doctor was convinced that it was a false positive, but wanted me to see a rheumatologist. In the beginning of February I saw the rheu doctor. He decided to do more specific testing. Now, it’s two weeks later, mid-Feb, and I just went back to see him today for results. He told me he couldn’t believe it, that he had thought nothing was wrong with me. But that the tests showed that I am actually positive for Mixed Connective Tissue Disease (MCTD), which I’m sure some know is a lot like Lupus, but a bit more mild. He told me he was very taken aback. Then he informed me I can either go on medication (a kind they use to treat Lupus) or go on Prednisone for a bit. So I’ve opted for the Pred. I’d like to stay away from stronger medications as much as I can, if possible. He then told me I must have a heart sonogram to make sure I don’t have any sort of damage as that may happen with MCTD.

Yes, the diagnosis is a little worrisome, and yes I have my concerns, but I know I’ll be okay. I’m a strong person myself, and I have at least 2 very strong people, my mom and fiance, supporting me. I’m just glad now to have a name for what is wrong, for all the people that didn’t believe me and thought I was just overweight or that it was just in my head, but mostly for MY peace of mind.

I’m certain I can make it through this disease, and am thankful it wasn’t something more serious.

Kayleigh
Maryland
Submitted 2-18-11

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

28 comments

  1. Hi Kayleigh: I am a mctd “sufferer” for the past 23+ years, and I too had a struggle to get diagnosed: took me 3 years to get my thyroid diagnosed: then another 7 for the mctd: its a lonely road with no “Name” for the condition. I have raynaulds, sjorgrens, ra and hypo thyroidism. I have been on plaquinal for the ra for about 13 years now. its a lonely disease but thankfull for friends/amily support.
    One of the worst aspects is the “loss of identity” i.e. not being the person you used to be.
    I live in Darwin Aust. and am 56 this year. Was about 32 when diag. with the thyroid: had a baby at 34, but generally havent been able to work in the workforce since then.
    regards, Debbi.

    • Thank you for your kind words and sharing your story with me, Debbi. It’s always nice to hear from others who have MCTD and know exactly, or close enough, what it’s like. I’m thankful it didn’t take as long for me to gather a diagnosis and that we seem to have caught my MCTD in a mild form. Hopefully this means I wont have as much trouble in the future as those that may go a long time without a diagnosis. I am also very lucky that I don’t really have any other disease along with MCTD, other than the fact that I have some high blood pressure. Though, I am at risk for many other things, due to my family history and due to MCTD. Luckily, I just had my first yearly sonogram of my chest to check on my heart and lungs, and from what it seems, everything is alright with those for now. I hope that in the future I do not have problems working in the workforce in the future. I have yet to see how I can handle having a job, as I have not been able to find a job yet. But thanks again for sharing your story with me, and I hope that you have as wonderful a life as you possibly can and don’t let any of your diseases bring you down :].

      • Kaleigh

        I just spotted this page. I hope all is going well with you. I live in Northern Virginia. I notice you live in Maryland. FYI…John Hopkins is one hell of a hospital if you are anywhere near there they are on the cutting edge for treatment. I only got vague answers from the rheumy here in Virginia…always confused about the best treatment options. I can’t tell you what a difference it made going there.
        Anyhow its all online!

        Lori

        • What did they do at john hopskin? I was first wad diagnosed with lupus then another Doctor said its Mctd. I have had 2 small strokes and am experiencing anxiety I believe its medicine induced after research. But I need better methods if available. We should all support one another, you know our own support group. Im on skype princessjd7.

    • Hi My name is Glori I am close to your age and I was diagnosed about 5 years ago w/RA now it is MCTD with Lupus and I feel like ____most of the time having to take stuff more for muscle and joint more and more. I tried and tried to excercise by walking on treads and stuff and had to move from Calif to Missouri-the place where all immun sys disorders get worse-licky ha-anyway sent me to a heart doctor just to check and I have Hypotrophic-Cardio-myopathy HCM- a thickness in the heart-heart? I never had this or anything with anything before this all started affecting me -so to say you go through a loss of Identity-OMG I am there I am having a hard time knowing what I can and cannot do and imbarrassed when I can’t I look older physically than I ever ever thought i could and not because age because the fatigue and hurt and pain just hurts and gets very depressing I know people know this who have it I am so pissed at this I really don’t know what I did or anyone else to get this-i guess thats what cancer patients say ha? anyway you’all write me I need you, glori

      • I have MCTD 12 years and the doctors seem to know nothing more thn they did. We are women suffering needing anwers!!!! instead of pills that cause damage. i’m tired of Doctors acting like this disease is nothing. I’m ready to start a law suit for equal rights as anyone else. The eaast we need are far more copmlex!! Than a cbc which is usually fine so they awome we are!!!! We need each other!!! We need to fight being pushed to the side. If i showed you a picture of me now compared to when I first was diagnosed you wouldn’t belive it’s me! there is a new walk for autoimmune diseseases to fight back.. We have a group on face book.

        • I been looking for a group. What is the group called on facebook?

        • Melissa Anderson

          Cherish did it make you gain weight?

          • They diagnosed me in Feb. I have put on 30 lbs, My blood pressure and heart rate is way up. I have pain in most joints (feet, knees and wrist/hands the worst)!! Kidney disease/damage. Newly diagnosed heart problems (minor). Shortness of breath (really bad)!! and now I’m getting sores on my tongue.I have seen 4 specialists already and now I have to go see a endocrinologist. I am already sick of doctors. I can’t get a straight answer!!

        • Hello my name is Yetzenia I am 32 yrs old I was diagnosed with lupus 2012 after I had my twins,but I was still in pain and they did more blood work and found out it was mctd…I am tired of doctors feeling like they know exactly what’s going on, I am in pain every night day second, my fingers are always swollen my wrists hurt just everything I’ve lost so much weight, I go out and I’m ashamed when people look at me and think that I’m on drugs…I don’t have strength anymore I can’t play with my boys they hug me and I cry cause it hurts so bad I can’t open a bottle of water I can’t dress myself this condition takes over and I feel sometimes like I’m the only one, I cry myself to sleep it even hurts to even sleep…I filed for S.S.D and they denied me..my doctor said I’m not gonna put you as disabled, are u kidding me!!! I can’t go out in the cold my fingers go numb I can’t get up outta bed, and all doctors say is take medication I’m tired of taking medication it’s not doing ANYTHING!! THEY DON’T UNDERSTAND!! I get worse everyday…all my doctor can say we’ll I’m not gonna see you until you try a new medication, what kinda crap is that??!!? I don’t knw what to do??

      • Gloria, when I was diagnosed I came home on a walker. The Doctors couldn’t tell me if I would ever ealk again. But I got tired of falling down. My family wouldn’t help me But God did, he is real I started praying about it and I heard a voice say get up and walk. I been walking every since. The holy spirt heals. Find a holiness church and have them pray in the holy spirt over you. Doctors wouldn’t give this advice but I tell you im walking everyday.

        • Amen! God will heal you. My daughter was just told by her Dr. that her labs showed signs of mixed connective tissue disease just about a week ago. She is 17 and has been in pain for years. The Dr is sending us to a specialist in March of this year. This is the first time I have ever heard of this disease…. my husband and I have watched her suffer for years and the doctor’s had no clue what is wrong with her. It’s horrible. …. I just continue to pay that our Lord will heal her. Keep the faith. God is good….God bless you!

  2. Thank you for sharing your story. I’d love to know a bit more about the blood work they did to diagnose. I’m about borderline everything tested thus far but I feel that even the rheumatologist kind of looks at me funny when I complain about my pain.

  3. Hi Kayleigh,

    I have MCTD and was diagnosed in 2008 by a visiting doctor to my usual surgery. After listening to me talking about a period of anxiety and sleeplessness he asked if I had any other medical problems/symptoms. I told him about my underactive thyroid, raynaulds and hair loss; he immediately put me in for a blood test. Doctors always say this is hard to diagnose but I think, in actuality, it is hard for doctors to listen properly and overcome their judgemental nature (‘she’s a bit of a hypochondriac’).
    I have fatigue and intermittent joint pain/back ache.

    As I have had my Raynaulds from my late teens, it is probable that I have had MCTD since then (I am 49 now). I often ponder on the ‘environmental trigger’ that started my disease and wonder whether it was teenage vaccinations.

    I refused to take Plaquinil and instead opted for a healthy vegan diet and daily vitamin regime. I had been vegetarian all my life but decided to improve my food even more after reading ‘The Optimum Nutrition Bible’. I think I manage ok – I work as a supply teacher (I got much too tired teaching full time on a regular contract).

    I have 6 monthly checks and they are, so far, ok. The Rheumatologist thinks I might just carry on in the same manner.

    I thought my story might be of interest to you. I was totally freaked-out by the diagnosis at first but now live with it fairly comfortably. I hope you will get to be (or are already) too.

  4. I have MCTD too. I have Lupus, it’s mild for me too in most ways but it affected my central nervous system so I’m doing Cytoxan for it. I actually spend more time with a neurologist than rheumatologist. I have Sjorgen’s Syndrome also. It’s so rare that you find information on Mixef Connective Tissue Disease. So every morning I take 69 mg of prednisone, 200′ mg of plaquenil (twice a day) 900 mg of gabapentin (4 times a day) and for the next five month I have infusions of chemo. Hopefully I’ll be in remission after that. I hope you all are doing well. I post under Lupus cause I didn’t even know MCTD was on here.

    • Hello I myself have mctd only after the birth of my son mine seems to be affecting my nervous system as well. I have little luck with dr.and am wondering were you live? It took me 2 years for some one to put me on plaquinel. What are your symptoms? Is your treatment working? Thank you

      • Would also love to know your CNS issues. I have had this diagnosis for four years and have so much difficulty remembering anything. I also have constant headaches and blurred vision. I am on plaquenil 200 a day because I can’t tolerate more. My rheum recently mentioned a neurologist. I am concerned.

  5. I recently (1mth ago) got diagnosed with connective tissue disorder I still have to go through all of the test to see which I have. I’m 17 years old and I have been feeling the symptoms for the last 4years; however doctors were never able to find the cause of all my problems. Now I have a long list of problems with my body. I am 5ft 10and 158 lbs which means that I have a healthy BMI but I still want to lose weight because I have scoliosis and it would be somewhat less painful if I lost weight. Any ideas? Thanks for your story though it brought hope to me because I hate constantly complaining about pain when no one could see that I’m not lying having a name for the disorder makes it all a lot easier.

  6. I was just diagnosed with MCTD yesterday. My main symptoms are aching muscles and joints, and fatigue. I have had these symptoms for about 10 years but I was told in the past that it was fibromyalgia and osteoarthritis. I began questioning it and went to a medical university where it was diagnosed after a very thorough workup and blood tests. In 3 weeks I will have an echocardiogram and pulmonary function tests done to see if my lungs are involved. I do have some shortness of breath. I am trying to read up on it to understand it better and found this website. I had Cushings Disease 10 years and was cured so I am ready to deal with the best I can and be proactive.

  7. I live in Maryland too, and was diagnosed with MCTD February 2013. My life changed so much in a few short months. Insomnia has been a problem since my 30’s, I’m 43 now. And chest pain, shortness of breathe and fatigue since I was a kid. “I was told that I was just anxious! Working full time, but just trying to get through each day of muscle pain, joint pain and crazy fatigue. On plaquenil just to be functional.

    Anyone get together in the Maryland area? Online is great, and I so appreciate finding people like you all who understand, but….in person would be really nice every once in a while.

    • I’m in MD as well and I found out in 2013 I had an autoimmune disease but found out it was MCTD last month. I just take my extra all day naps, try to limit stressors and became a vegan. It’s been hard to feel great about the news and it’s hard to not focus on it. However, I’m very early in the stage so my goal us for it to go away. 🙂

  8. Hi Kaleigh,

    Thank you for posting. I was diagnosed with MCTD just prior to my 30th birthday in 2011. I was told it was Lupus prior to confirmation that it’s MCTD. I was so relieved as I thought that the sheer exhausation and malaise was just what happened when you turn 30! ha ha. Besides that funny side of it, this condition certainly throws a few extra challenges in life. I have always been a very fit, active and healthy person my whole life. So, when I was diagnosed I made it my personal mission to be the fittest and healthiest version of myself. I am still on prednisone and weekly methotrexate but I have been off the prednisone for about a year. I still take it very infrequently if I really need it. I do weights six days a week, work full time and study law part time. Most people look at me and assume I am healthy (I don’t look sick…I am sure you’ve all heard this). Then, if I chose to tell people about my MCTD on top of it all they are amazed and what can be achieved.

    I have my bad days, I am in a minor flare up right now. I have mouth ulcers, no energy, get so tired, finding it hard to concentrate with aching fingers and wrists. I have also gone for a run at lunch on top of my workouts in the morning most days this week and will be participating in a 10km fun run on Sunday and I have a uni assignment due on Monday. I eat clean, nutritious food that I prepare myself. I get as much activity as I can in my life because I figure if I am in pain doing nothing, I may as well be in pain doing something!

    So, if you have MCTD it’s not an automatic death sentence or the death of your healthy, fit self. It takes close monitoring to know when you actually need a rest and when to push yourself that little bit to achieve your goals. It’s up to you as an individual as to how you choose to react to your MCTD. My heart goes out to you all at the same time as saying that because as I type this I know have pain radiating up both my arms but most of the time I just ignore the pain. It’s okay when there is no flare up but I will keep soldiering on because MCTD does not define me, it’s just another challenge that life has thrown at me and I know I am strong enough to overcome it.

    Sending healing, strength and positive to all of my fellow MCTD warriors. xx

  9. i was just told I had MCTD yesterday . I have been dealing with pain in muscles, tendons and joints , anxiety, blurred vision,memory problems and fatigue for about 5 years now. I have had a ankle rebuilt and a total knee replacement. But i knew there was something else wrong that was causing all these problems . Sooo my doctor just acts like it is nothing to even worry about. there is nothing he can do to help me . I went home and Goggled it and now I am concerned .WOW .. o and he told me to take Tylenol for pain. I am looking for a new doctor of course. One that is willing to help me.

    • hi Deborah, i was just diagnosed with MCTD just this last Oct…surprisenly because I have been healthy, although i did have a bunion surgery in june…I had alot of joint pain and my first symptoms awere swollen hands and feet..when i saw myprimary dr I was told I had Lupus..which I didnt even know what that was…and was referred to a rhumetologist..she confirmed it was MCTD..but i have gained a considerable amount of weight…25 lbs since Apr..I was a lso told it was menopause…still researching…

  10. when I was 15 I had hyperthyroidism it took the doctors 3 months what was going on with me. When I was 16 I took 2 radiation treatments after that I thought I was fine. When I was 19 I started getting sick again and when I was 20 they told me I had hypothyroidism and I still have that today but I could deal with it . started having problems in 2006 over the years my problems got worst 2011 the doctors told me I had two weeks to live because all my organs where shutting down. but I am still here think God. A month later I had problems sitting, standing, walking, bathing myself, and eating. over time I am able to do some things for myself. I still have a lot of pain all over and some I still need a lot of help sometimes. 2012 They told me that I had MCTD. I am very tired the doctors don’t know any more then I do. I see 4 different doctors. every month there is always a another problem. I just need answers.

  11. Hi. I am 63 and have recently been diagnosed MCTD, although have had various symtoms for last 10 years or longer. Just thought I was getting old too soon! It is good that the dots can be connected now with all of the symptoms. Am confused about some things. Have children (4) and 10 grandkids, and am mostly worried about it being hereditary. Have a laundry list of questions for first appts. with RA doc and Neurologist next week. I have never taken medicine for anything long term…so am pretty hesitant about that. See a lot of you posting about opting out of some of the meds…so I will research them. Also interested in the John Hopkins post and the Optimum Nutrition Bible as I have been a vegetarian most of my life…need to tweek the diet but need a direction to head for what is going on with my particular ailments. Nice reading positive comments! Would love to hear from older people going through this.

  12. I have mixed connective tissue disease. I was diagnosed about six months ago. After going for a run and being stupid, sprinting like a crazy woman, I had terrible shin splints. Started taking Advil, slowly at fist for the pain. Then a nurse told me I could take more……
    ..bad idea, 4 Adivil every six hours. I became so sick I thought I was dying, dizzy, couldn’t hold up my head get out of bed, throwing up and along with that swollen painful fingers, especially my thumbs, knees and ankles. My doctor gave me some medication to counteract the Advil. Said I really didn’t take too much. What? Then he said I was good for nothing. Can you believe, what a jerk. So needless to say, the joint pain didn’t go away and I had to go back to the doctors office. But I saw the Nurse Practictioner instead., she did blood tests and decided to send me to a RA doctor. She couldn’t figure out what was wrong, it was funny and asked me if I had osteo arthritis. What the heck? Took xrays and said you don’t have any junk in your knees. Good to know. Well six weeks later, she called me and told me over the phone I had mixed connective tissue disease. I asked if I should come to see her again and she said no I just want yo to take placqunil. REALLY! Decided not to take it, because of the side effect that it can destroy your retinas……. I already have problems with my eyes, due to being an identical premie. I have an Identical twin sister, who doesn’t have mixed connective tissue disease.So what I have been doing since I was first diagnosed is take Digesta Cure. Which help quite a bid until the beginning Jan 2015. HUGE flare, terrible pain in my lower back , lupus symptoms on my whole back, hot pain on the front of my body, in my rids. Couldn’t get out of bed without searing pain in my back Knees and waist. This has been going on all month. OK how did I handle this? Topical creams. Now I am using an essential oil , Lemon Grass, that helpd me sleep for the first time in months. Also for the last two weeks have been on a anti inflamatory diet. Maybe it will help. If anyone else has any natural remedies that they want to share with me , Please let me know. Also, I was told by a friend that has Lupus that my flare was probably cause by the fact that my family all got the flu and my immune system went crazy trying to fight it off. Has anyone heard of this? Should we all wear masks around sickies? Thank everyone for listening to my story…….HUGS and blessings to deal with this Love Karolyn

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