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MCTD (Mixed Connective Tissue Disease)

Posted by @ellashab in Autoimmune Diseases, Oct 3, 2011

Ok, here goes my story....4 Weeks ago I was diagnosed with Mixed Connective Tissue disease...I am normally a busy busy person, I work full time as a police officer, volunteer at my church, work a lot of off duty, and I have Three Boxer Dogs that I show, and I'm I have a lot going on and this has pretty much put a stop on everything...I'm on 30mg of Prednisone, Plaquenil, Imuran, and Amitriptiline (for depression, anxiety), and Nexium twice a day...Some days I'm fine and other days I can't get out of bed either because I'm so tired or I'm having a flare. I would just like to talk to other people who have this disease and who can relate to me. I feel like I'm losing my mind and body for that matter.....Is it always going to be like this? How do I slow myself down? The concept just seems so alien to me....HELP

Tags: auto immune disease, ictd, spinal cord, chronic pain

csigirl7 and Kelly Clayborn like this

Posted by @bedorejm, Oct 5, 2011

With the right amount of sleep meds and pulling back from only essential activities you may improve however, my understanding is that it is an autoimmune disorder and how to get that to go into remission is a larger question. You are not crazy it is a real thing that demands changes in amount of activity as well as intensity


Posted by @angiea, Oct 8, 2011

Hi just read your post. Been living with Sjogren Syndrome and Lupus for over a year. These particular dieases are considered auto immune. Therefore your body is attacking itself. So you are going to have to make some major changes to compensate for the fatigue the pain and any other symptoms you may have. Good news though the plaquenil will resolve your fatigue. the only thing is it will take 3~6 months to kick in! Watch it the prednisone will help pain but it will make you gain alot of weight!!!!! Exercise when you can! DO NOT over do it!!!!! Your body will let you know.Take Care!!!!


Posted by @tigerlilly, Aug 1, 2012

I have MCTD sjogren's, raynauds syndrome, photosensitive skin, fibromylygia, depression and anxiety.

Edited: 05/04/2016 @ 10:51am


Posted by @snowaries, Oct 15, 2011

Your case is interesting. I started having severe dizzy spells, heat flashes mixed with chills, skin break outs, extreme fatique. At first, I thought I was going through early menopause based on the symptoms. When I don't feel well, I am out for the count, literally no energy.

I have several drs running several tests which all come back as normal. Then one test showed positive for Shogrens (not sure of the spelling). Saw a rheumatologist and he said I scored positive but too low for shogrens. He did a saliva test and blood work again and it came back as normal this time. I can also take allegra which relieves the symptoms so according to the rheumatologist, no shogrens.

My allergy dr thinks I may have hives. I took 2 more tubes of blood and now he thinks it may be Mixed connective tissue syndrome. I am fatigue, dizzy, etc but the other symptoms I really don't have.

I was sent to an ENF which after several balancing tests and a brain scan said I have a 23% loss in my inner ear on the left side thus the source of my dizziness and balance issues. This makes sense since after I work out, I am too dizzy to move. Heck, I can be sitting and get dizzy. They have me on clonazepam to take a night and seems to be working. But, if I wake up dizzy, I have nothing to help me during the day.

This all started with severe skin break outs everytime I ate. I can take one bite of food or a sip of a beverage and my head is spinning, my skin breaks out in rash looking lines and/or spots. The only things I am safe from is water, unsweet tea, and diet soda. I tested negative for food allergies, pollen, nature, and actually only allergic to dust (after being poked several times).

I've had a nasal MRI, breathing tests, and another round of 10 tubes of blood for various tests only to be informed this past Wed that everything was normal.

I am quite frustrated as to what is going on with me. I too am very active, travel for my company weekly, in school full time, and stay busy busy. I am wondering how your MCTD was diagnosed and if your symptoms progressed over time. Do you think it came about with diet or certain foods?

I am also curious as to which foods help / hinder these symptoms. I heard various kinds of berries help as well as rice, fish, cinnamon, flex seed.. does all this really work?

Anything you can offer would be greatly helpful and appreciated as I am frustrated yet anxious to find out what is going on with me.



Posted by @kellyclayborn, Oct 15, 2011

New to this site, but my Mom has been encouraging me to contact the Mayo Clinic to help me regain my quality of life. In 2008 I was diagnosed with cervical stenosis. I was told it was severe and needed surgery ASAP. I was working for a great hospital at the time, was recommended the best neurological practice at the hospital. The neurosurgeon decompressed and fused my spine from C3 to C7 posteriorly. When the surgery was complete and they were turning me over, something went a rye. All the bells & whistles went off that were monitoring my nerves & spine. They immediately took me in to have an MRI and found nothing to be wrong. When I woke from surgery, my surgeon, his assistant and my husband were all there and the neurosurgeon asked me to move my fingers, hands and arms. The only thing I could move was my fingers a tiny bit. The neurosurgeon had an "oh shit" look on his face. He then went on to explained what had happened after surgery. My life has never been the same since. I had to relearn how to use my arms & hands which took almost a year. It has left me with chronic pain in both my arms & hands. While going through OT/PT it left me with tears in both rotator cuffs which eventually healed. So during this year while dealing with these issues, I was trying to get my pain managed and under control. Was referred to pain management facility cuz they had to give me very strong opioids and it was tricky to find the right combination. While I jumped from one opioid to another,my pain was getting worse and more difficult to manage. During this first year of while trying OT/PT i began swelling up and was showing signs of possibly RA, so thus was sent to RA specialist. After working with him for the last two years and being now diagnosed with inter-connective tissue disorder. I have been put on several different types of medicine to keep my symptoms at bay but between the chronic pain in my arms from the spinal cord injury and now the inter-connective disorder I AM MISERABLE. I have no energy, everything hurts all the time, including walking. Early on,they had been giving me prednisone to help but I gained almost 75lbs since the surgery in 2008. I don't take that medicine anymore. I have since managed to fall break my foot and had to have surgery (this was from being to drugged in managing my pain). Then when checking my nerves in my arms & hands with an EMG test, it was discovered that my ulna nerve was being crushed in my right arm. I was loosing functionality in my right hand, so they did surgery to correct that. I still have difficulty with my right hand, so maybe it wasn't just an ulna nerve problem? I was told that my right hand difficulties could be coming from my spine, from the original surgery.

So hear I am,trying to explain this very complex situation (but there is so much more as with everyone's situation) but I'm trying to keep this short. That and it hurts to type, or work at a computer for anymore than an hour at a time. I WAS a type "A" person, worked as a police dispatcher, flight for life dispatcher, volunteered for the police department. I have a husband, two grown kids (out on their own), 4 Grandkids any my elderly Mom who all counted on me to be there to take care of things. I now live with chronic pain on a daily basis due to the spinal cord injury, inter-connective tissue disorder, recovering right now from my arm and foot surgery, I also attended a rehab center to change my chronic pain drug which were opioids to a synthetic opioid which was to help with withdrawals since I was on so many pain drugs and it was to help manage my pain but it's not helping as I would have liked it to. I still take an opioid and anti-anxiety drug, nerve pain drug, antidepressants, muscle relaxors and a handful of drugs from the RA doctor. He is now suggesting that I get monthly drug transfusions to manage my ICTD cuz now it's spreading to my hips which is making it very difficult to walk. This is really scaring me.

So you ask why I would post on this site, like I said encouragement from my Mom, family and friends to see if we can get part of the old Kelly back. I'm willing to keep trying to get better but it's very hard day after day living with the pain and all the drugs but especially when you feel like your not getting better only worse. I really want a doctor or facility to look at my whole picture and see what could be done to regain some of my strength, energy, maybe even become pain free.

One of the questions that I keep asking all the doctors is the spinal cord injury after the surgery and the ICTD possibly related? Most doctors have said no,but I did find a doctor that said hmmmm maybe. He went on to explain that maybe I was allergic to the metal that fused my spine together. So I got on the Internet and did some research and found that sometimes the metal, like titanium (mine was titanium) has a small percentage of nickel in it. It's like when you wear cheap earrings or cheap jewelry your skin or body can react to it. I was asked if I had any metal allergies. I didn't think so, but I know when I put earrings in that have nickel in them my ears puff up, turn red and get infected. It got me to thinking that could it be that I'm allergic to the metal in my neck. I was never tested for metal allergies, so I had a skin test for different kinds of metals. Those tests came back pretty much clear, but in my Internet research I found out that you need to have a specific blood allergy test called MELISA test. There is a website called that has lots of info regarding this test. My problem has been finding the right doctor to get this test performed for me and wanting to get a lot of my questions answered, like......i.e. If I am allergic to the metal, can I take it out? Will my spine stay stable? Is it causing the symptoms of the ICTD? If I am allergic, has the metal already poisoned my body or could my body heal itself if it's taken out? My ICTD didn't start until after my surgery, so I somehow feel it's related. I feel that I can deal with the spinal cord injury issues. I've gotten back some of my use in my arms & hands but there are still some issues that I have to work with. The constant pain in my whole body now especially my joints, the fatigue and all the drugs. I just would like someone or someplace to help me sort all of this out, do the MELISA test for my own piece of mind and help me get healthy and feeling better again. I'm on disability now, it's hard to function somedays just even staying home trying to take care of myself. My family worries about me being home alone, since I've fallen several times already. I WANT MY LIFE BACK,or some sense I'm in control.

If anyone reads this and can help, or give me their input, I would really appreciate it. If there is a doctor that works at the Mayo Clinic that stumbles upon this and feels moved to help, I would be very grateful. I have family and friends that count on me, especially Grandkids I would like to see grow up.

Thank you for taking the time to read and listen. Look forward to hearing from you.

Edited: 05/04/2016 @ 10:52am


Posted by @numby, Nov 1, 2011

I'm sorry to hear you have MCTD. I was diagnosed several years ago. I also have Rheumotoid Arthritis, which I never know which is hitting me, MCTD or RA, such simulair symptoms. Slowing your self down is NOT easy. Wow! I use to be SO active, you could not hold me down, it's all changed now, the disease has me down. Lot's of rest is key, eating right and a good doctor! Good luck and keep in touch.


Posted by @xanderbam, Nov 2, 2011

This is my first time on here but I am 22 as of today but i found out that I have this disease about a year and a half ago. I cant help much because I need help myself. Recently i had to go up on the amount of prednisone that I was taking. And im also taking cellcept. I honestly dont know if this is helping. If you have suggestions for me as well that would be good. ( as far as exercise goes, I heard that climbing stairs would help you in the long run)


Posted by @powerofpositive, Nov 4, 2011

This is also my first time here. Glad to find you folks. This journey can be a lonely road, even with the unwavering support from family and friends. One can not easily describe the way one feels and honestly I don't expect others to grasp "it". But you all do... and so a warm hello to you all!
I have been symptomatic for a few years. Have had a few injuries over the years, work, auto, sports and building our home..Very active person who maybe has been a bit accident prone but with lots of make dreams come true.
Trips to my PCP brought comments look great, Resented being brushed off as "just another menopausal woman".. c/o memory issues, back pain (that's a stigma in it self) flushes, fevers (low grade), sleep disturbances/waking up in pain and having to walk around to unstiffen, decreased libido, needing hot baths/showers and heat pads for comfort/pain relief...etc. etc..This went on for @3 years. This dispite the fact that I had a lesion on my neck that was getting larger and larger. It was dismissed as being caused from inflamation...I changed jobs to accomdate my body and my decreasing energy level. My husband began suggesting I quit working but that didn't sit comfortable with me as I loved nursing (well most of it) He suggested finding another doctor...not an easy task livig in a rural area and given that my energy level was so diminshed it all seemed overwhelming to start over with someone else..That was my PCP, clue referred to another Derm he offered to take care of it with lazer..for cosmetic purposes. Back to first Derm who biopsyed "it" at my request. Turns out it is indolent bcell one will say but now have also been diagnosed with Shojrens, ?RA, Lupus, Ranauds and positive cardiac lipid. I wonder if the cancer is the outcome of being sick with so much for so long and no will say for sure but that's my guess.
Sooooo guess who wasn't kidding when I pleaded that the fatigue is overwhelming...the pain insane ( now have permenant wrinkles @ my mouth from grimmising through my days these last few years) LOTS of advil helped take the edge off some days, have taken fish oil and flax seed for years along with vit. D.
I am some what over the RAGE I have experienced. Underwent chemo (Rituxam) and the cancer is still there....the biopsy spread this down my back. Still am symptomatic with low grade fevers...the pain has lessened but still remains, esp. in my hips. Lately the nausea in the am has reared its ugly head again. (PCP thought it was from my toothpaste) .
Well eneough EXPRESSING! Sorry for the vent...and this is only a fraction of the fustration.
On the lighter side. On good days I do find walking and stretching/yoga and light weight bearing exercised helpful...on bad days it is difficult to feel like much of anything.
Eating healthy, that means different things to people but for me that helps alot with limited red meat, lots of fresh fruit and veggies, alternative protien sources, chicken and fish. and lots of GOOD FATS...flax seed, olive oil etc. The right fats can help heal or in our case help maintain good joint and cardiovascular health and then there are fats that kill.....theres alot of reasearch and great books on this subject.
Well thanks for listening. Today is a good day ,so I'm off for a walk in the woods here soon and if the feeling continues ,to run errands.. Just keep moving as much as you all helps.

Posted by Anonymous-aeaf6ea1, Dec 29, 2011

I see you are on 30 mg Prednisone and just hope that you are not on it long term. It has some very serious side affects, although it will make you feel great while you are taking it. I have a family member that has taken this drug for an extended period of time and it caused cataracts. It also caused adrenal glands to shut down.


Posted by @camille, Apr 20, 2012

I was recently diagnosed with MCTD, Fibromyalgia, Post Traumatic Stress Disorder. and Major Depression, and am unemployed, and separated from spouse of 18 yrs. (He lacks empathy and is verbally abusive; my pain seemed to triple) I'm treated with Cymbalta and Lidoderm patches. My rheumy is testing for Celiac Disease & told me to use ice for my nerve pain. I think I had two mini strokes at my former place of work. All of my muscles and joints ache and I do not function. My legs swell and I have petechiae. My eyes itch like crazy and nothing I eat seems to agree with me.My glands are swollen and I'm super tired. I wake up with migraines for multiple days in a row, and have done this for weeks. Also, I am having cognitive problems.I have a few recent events that I have absolutely no memory of. It is difficult to concentrate and problem solve. I'm very accident prone. I backed into someone's car, had massive diarrhea in the men's room at Walmart, and asked my neighbor to open a can of soup because I broke my can opener, and the other two can openers I brought to replace the original. Suddenly I did not know how to use a can opener! My left rib hurts, and my whole body has been itching without a rash for over a year. I have been short of breath, and in hindsight have figured out that I was misdiagnosed with asthma years ago. My hands swell with my legs. I'm 41 and my menstrual cycle stopped almost a year ago. My rheumy said my liver is inflamed. I have earaches and hear my pulse when I lay down. When I sweep my tiny doorstep, my biceps kill me. Right now my shoulder is killing me and all I have is Aleve and Lidoderm patch. It still hurts.
When I used to work it hurt to move the mouse, and one day I did not think I was going to make it way down to the toilet! I loose my balance, have heartburn everyday, and urinate frequently. Thankfully my doctor has given me something to help me sleep. However, I do not understand why my rheumy has not given me more medicine or helped with the pain. I've only been 3 times. Next visit I'll take some brownies and beg. God bless each and every one of you as you mange day to day. Thanks for sharing your information and stories.

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Posted by @erimanswe, Apr 24, 2012

i was just diagnosed with MCTD i thought i was crazy all the different pains and things was happening to me i am glad to find this forum to hear from other people that are in a situation like myself.I am trying to find as much info about the disease so if you do the same i will update as i find out more and keep checking back to see if any new info has been posted


Posted by @livingngrace, May 21, 2012

I am 41 and have been fighting this for over 14 years. It started with muscle weakness and joint pain. I couldn't lift up my 3 year old son and Ifound that I couldn't run with him. Years of doctors, specialists, tests, misdiagnosis, medications, side effects, more pills to counter the side effects and damage of the orignal medication..... Just to cycle around and discover the medication wasn't working... More tests... Blah blah. So, after all of this I am off my meds! Don't get me wrong, this is tough. I have pain and stiffness every day. But, I am not sleeping through my life (the meds made me so groggy) I am not mentally flatlined (I was taking. Cymbalta, but I wasn't depressed!) I am trying to manage my symptoms with diet and excersise. ZERO impact activity (water classes). And tons of the RIGHT foods and herbs. Progress is happening. I still see my family Dr for routine health checks... All is fine! I've lost 40 lbs (50 more to go) and I'm not smoking! Things I tried to do for years but never was able to do iron the meds... I feel like I have my life back!


Posted by @zbrooks, Jun 20, 2013

I have MCTD also, I can really relate to how people feel. I'm 41 years old and I feel like my life is over. I have pain constantly in my hands, my fingers are swollen that when I told my doctor he said that is from me doing Data Entry. I wanted so bad to tell him that he has not walked a day in my shoes. My legs are swollen from my toes up to my knees....What should I do? The doctor that I have is not a Rhemy.


Posted by @allfatiguedout, Sep 8, 2013

I was diagnosed in January when all of a sudden I spent a week not being able to get out of bed. I put it down to flu but remember saying that i just dont seem to have other symptoms other than tiredeness (Extreme tiredness!). Thats when it began. Got diagnosis of mixed connective tissue disease and am now on hydroxychlorine. My main issue is the tiredness. Since my flare up that was so bad in January, I've never been the same. I am tired all the time. I am a single mum of a boy aged 9 and I've been soo active with him in school holidays and done so much with him all these years. this year is the first year, I have done nothing - literally. He's like, mum why are you always just resting? i cant even take him to legoland or for a run in the park with a football. Well, i can, but then I'll be knocked out for the next two days. This is really starting to get me down too, alot. No one seems to get it. Im not just making it up, when i say I'm tired, I am exhausted. I can be ok for an hour and then if you see me two hours later, I'm in zombie state. so unpredictable. EllashaB, I feel for you. This is new for me too. I also need advice on how to slow down. I have a full time demanding job also. Some days i just cant think straight now. HELP 🙂


Posted by @mlew0731, Jul 28, 2013

Hi! I'm newly diagnosed with MCTD. I'm 32 years old, married and gave two young girls. I work full time and I'm very type A. Honestly, my symptoms haven't disabled me, but right now the fatigue and trouble sleeping are bringing me down.
Can anyone offer suggestions to help deal with the aches and pains at night? Ideas for combating the daytime fatigue? Right now, I depend on coffee and energy drinks to make it through work. At night, I'll take Benadryl if it gets bad enough to knock me out. :/
I appreciate any and all advice. Thanks in advance!


Posted by @allfatiguedout, Sep 8, 2013

Hi - I'm a single mum to a lil boy aged 9. I was fine until January this year. Very active mum. I work full time in a demanding job. I am plagued now with this fatigue. This is the first summer ever that I havent been able to get out and about and run around with my son. It's really gettingme down too. I just have to rest all the time. If I overdo it one day, I pay the next 🙁 I thinnk we just have to have a sensible diet (try to exercise - joke that is, since we have no energy) and stay positive ! good luck

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