MCTD (Mixed Connective Tissue Disease)

Posted by EllashaB @ellashab, 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 married…so 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

@mlew0731

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!

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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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I’m a 50 year old woman and was diagnosed with UCTD 6 months ago, so I’m new to the game. I still don’t know alot about this disease but I just know I hurt a lot. I am not on medication yet, I was wondering how bad does it have to get before the Rheumatologist puts me on medication, I’m not sleeping because of the pain. Any advice would be greatly appreciated.

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Welcome, @regeanna.
Thank you for re-initiating this discussion. Let me introduce you to a few active members talking about MCTD and undifferentiated connective tissue disease (UCTD). Please meet @jewel8888 @kariulrich @luladavis and @dogmamat. I hope they can share their experiences with respect to medications. You may also be interested in this discussion:
– Side affects from Anastrozole and MCTD leaves my body achey http://mayocl.in/2nhKEZ7

Not being able to sleep because of pain is a vicious cycle, isn’t it? I bet @sandytoes14 would have something to add about that.

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@regeanna

I’m a 50 year old woman and was diagnosed with UCTD 6 months ago, so I’m new to the game. I still don’t know alot about this disease but I just know I hurt a lot. I am not on medication yet, I was wondering how bad does it have to get before the Rheumatologist puts me on medication, I’m not sleeping because of the pain. Any advice would be greatly appreciated.

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@regeanna I am so sorry to hear that you are not sleeping because of the pain. Please let your physician know that, I would hate to see you go into a downward spiral because of inadequate pain control. The best thing for you to be is be your own advocate, do not try an put on brave face for your doctor, be honest. That is easier said than done, I know. Sometimes it takes a while to admit to yourself that it is really as bad as it is. Does that make sense? It may take some time to figure out what works for you, but you will get there… and just when you think you have everything under control your symptoms change or medication does not work well as it once did. Things with chronic disease are constantly changing and it can be frustrating at times… but you always have us here to get you through those times.

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@regeana I echo @kariulrich advice on speaking with your doctor. You have many things going on at one time to which I can relate. Chronic widespread pain either keeps me awake or wakes me during the night. Our bodies need not only enough sleep (time) but quality sleep. I suggest you click on the following links that may give you some recommendations on sleeping better and a chance to chat with other members who are going through the same thing.
When doing some research on UCTD I found this interesting information http://bit.ly/2n5Mxq8 It certainly seems that Connective Tissue Diseases such as Systemic Lupus and Rheumatoid Arthritis overlap.
Sleep Hygiene : http://mayocl.in/2nV1XSL
Sleep and Pain: http://bit.ly/2npP6qf

Regeana, can you share with us what symptoms you have? Are you seeing a doctor of rheumatology?

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@sandytoes14

@regeana I echo @kariulrich advice on speaking with your doctor. You have many things going on at one time to which I can relate. Chronic widespread pain either keeps me awake or wakes me during the night. Our bodies need not only enough sleep (time) but quality sleep. I suggest you click on the following links that may give you some recommendations on sleeping better and a chance to chat with other members who are going through the same thing.
When doing some research on UCTD I found this interesting information http://bit.ly/2n5Mxq8 It certainly seems that Connective Tissue Diseases such as Systemic Lupus and Rheumatoid Arthritis overlap.
Sleep Hygiene : http://mayocl.in/2nV1XSL
Sleep and Pain: http://bit.ly/2npP6qf

Regeana, can you share with us what symptoms you have? Are you seeing a doctor of rheumatology?

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Thanks for the information about sleep! Yes I do have a Rheumatologist I’ve only seen her twice. The kind of symptoms I have are muscle pain and weakness, extreme stiffness, raynaulds, sicca, photo sensitivity, rash, heart issues but I feel fortunate to know what it is, because for a long time the doctors didn’t know what was wrong with me. Thanks again, best wishes!
Regeanna

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Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

Liked by jewel8888

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@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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Hello @faithandlove, welcome to Mayo Connect. I did a quick search on connective tissue by clicking on the search icon (small magnifying glass at the top of the window) and found the following topic where it may be a great place to ask your question and chat with others.

If you would like to join people talking about mixed connective tissue diseases (MCTD), I invite you to post a message and introduce yourself here:

– MCTD (Mixed Connective Tissue Disease) http://mayocl.in/2oJwj7W

Hoping you get a response soon!

John

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I’m wondering how you all went about getting a diagnosis? I am feeling frustrated as I have other medical issues but my RA testing is coming back ‘normal’ so they don’t think that I have a connective tissues disorder, but many doctors have mentioned it. (And I have several symptoms that align with them.) Any suggestions?
Thx.

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@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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Hello @faithandlove, (what a lovely username),

I’d like to add my welcome to John’s, and encourage you to look at the information he has provided. I hope @snowaries @numby @xanderbam @powerofpositive @cindia1 @livingngrace @zbrooks @regeanna @jewel8888 @kariulrich @luladavis @dogmamat and others will return to share their experiences with you.

Here is some relevant information from Mayo Clinic as well: http://mayocl.in/2nUbmJX, and here are details about Mayo’s Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@faithandlove, since this disease involves a combination of disorders, could you tell us a bit more about your symptoms? Are you taking any medications to relieve your pain?

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Hi @faithandlove,

I should have done this earlier, but I’ve moved your message to this group now, so that we can discuss connective tissue disease in one place.

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@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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Thank you! Early onset of osteoarthritis, pain all over, venous problems, poor wound healing, joint hypermobility in shoulders, ankles, knees, etc.

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@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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I would encourage you to talk to your doctor or get appt at mayo with a genetics counselor. I have Marfans that is a connective tissue disorder that effects body’s tissue with your hyper mobility that you have of symptom of Marfans

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@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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There are so many connective tissue disorders, and many overlap. Not an easy diagnosis by any means. Have you had a large blood panel done, not just RA?

Liked by jewel8888

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@faithandlove

Does anyone have experience dealing with connective tissue disorders? I’m wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it’s not a connective tissues disorder, is that accurate?

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I have had a full CBC

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