MCTD (Mixed Connective Tissue Disease)

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!

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

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.

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!

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 🙂

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

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.

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.

@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.

@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?