MCTD Support Group

I actually have UCTD, along with a host of other things, but I have to say that my CTD is the most painful of the bunch. It's what causes 90% of my breakthrough pain, and when it breaksthru, oh wow, it's painful! If I didn't have narcotic pain meds, I don't know how I would manage. They're the only thing that allows me to function AT ALL! The fibromyalgia and DDD was bad, but when my CTD started up in 2006, that was a whole world of pain that I didn't know existed. It's extemely debilitating for me.

I just want to make sure that I'm on the right meds to keep it from progressing to MCTD, or Lupus or RA, since that's what it usually does. I'm on some meds, that are supposed to stop it, but hope they are the right ones, at the right dosages.

Hope this community grows a bit. This is a big part of my life, and I'd like to share with others, the difficulty and complexity that it brings to me, and find out if that's common.

Thanks for the post.

I had a crisis that led to the discovery of MCTD, and I think I'm fortunate that it was discovered early. Where I am now is dealing with fatigue, muscle weakness, and trouble keeping my feet warm. I think these are mild complaints compared to others. I've worked with a nutritionist who specializes in anti-inflammatory diets. I learned with her help that I'm sensitive to gluten and dairy. Since taking these out of my diet, I feel much better and I'm going down on my meds! I'm taking the approach of working hard to keep my symptoms at a minimum. I think when there's a little bit of inflammation, it can quickly grow exponentially and then be hard to control. I'm thinking there are ways we can get a few discussion strings going on this to help each other. I'll add some soon. If anyone wants to know about the biology of the immune system, I have scientific training in that area and could perhaps give some information to help your understanding if you like.

Hey, Aspire,

No one knows the magic bullet to keep things from progressing, but here is my experience looking at your list of meds:

* Ultram/NSAIDS: Placebos, garbage. do nothing and make you depresssed.

* Ambien: Very fast tolerance develops, be very careful with this, two or three times a week at most.

* Klonopin: Very, very dangerous, lots of people I know have had trouble with this. Try to get off it and swap it for...

* Ativan: Great for sleep and anxiety, but do not up the dose. A safer older benzodiazepene, prefer that to ambien, ambien only if you wake up in the middle of the night. Doesn't get you high, less risk of abuse (though some.) Tolerance develops much more slowly. Also not very toxic, but ask your doc.

* Opiods: Great, but limit to a single dose a few times a week if possible, try to tough it out for the rest. Keeps you from getting too run down, but you don't want to build tolerance.

* Prednisone, etc.-- good for short courses to end a flareup, but we all know the long-term dangers.

General: Try to live as normal a life as possible, get out into the world. You want your tolerance for pain to increase, so you don't take more drugs. (I always ask myself, what if I had to have an operation, and I was taking, like, 6 vicodin a day? Bad news! 2 vicodin every two or three days? Not so bad.

Gentle exercise worked well for me, if you do sports, see sports medicine, tell them what you are passionate about doing, and they will find a way. Swimming and skiing help me incredibly, even though they can be unbelievably painful, I stay relatively strong. Hope that's something.

I was dx after I woke up one morning and couldn't swallow...literally. While I was waiting to get my thyroid checked, I developed SEVERE muscle weakness. I was powerlifting at the time...I went from squatting 260 lbs to not being able to walk up stairs or get out of a chair without help. My muscles felt like they were melting.
I have polymyositis, and mctd. I am lucky, my mctd alone wouldn't warrant any tx. I have had abnormal labs since I was 17 y/o. The myositis threw a wrench in the whole thing. I am currently living a perfectly normal life, complete with regular exercise and prednisone...the most famous miracle poison known to man!
I will not give in to this. I run up stairs now! And I remain pain free.

I have had mctd for the last 19 years, for 10 years i was undiagnosed, so it got progressively worse. I have liver problems, kidney problems, and last year my colon ruptured. I spent 3 weeks i hospital with piritonitus. I rarely take pain meds now, apart from when i get bad headaches. I walk every day (with my dog) Some days are really bad with fatigue, and generally feeling ill. I am waiting for tests on my lungs and heart, and some days i struggle with breathlessness.
Some how i manage to cope. I have no support from family, but fortunately i have a few good friends.
I think distraction is the key, when things get bad, i try to read, draw, or watch some funny movie.
My father always said "there is always someone worse of than yourself" i remember that when i'm feeling sorry for myself.

Ya, the headaches are the worst, and that's the only thing I take pain meds for. For some reason, I can deal with the body aches or leg pain from the DVT more easily, but the headaches are harder to tolerate.

Very debilitating is a good way to put it........when you cannot move your limbs to get daily chores done.....you tell your body to do something but it doesn't respond the way it should........the all over body pain is excruciating.....hurts to open your eyes.....your legs feel like they weigh 500lbs "EACH".....yet you have to get up to eat......go to the store....to the doctors....brush your teeth....cook.....I was so frustrated & in so much pain that my doctor wanted to put me on the morphine but I refused.......all I wanted was for her to find the problem & fix it......there was no clear diagnosis for what seemed like forever.....I really thought that I was going insane.....I had been fairly healthy until one day I just couldn't move......like I was paralyzed........then the pain started.......swelling so bad I couldn't fit into my shoes......up till the summer of 2004 I had been working & doing great then WHAM!!! I had my legs knocked out from under me & it felt like I was in a giant shrinkwrap machine & all the air was being sucked out while a tonne of pressure was being forced on me........when I got the diagnosis of MCTD/LUPUS/RA.....I thought well that is just great.........now what do I do with that??? I couldn't go back to work....I was forced to go on disability yet I still had to get to the doctor....physio....specialists 2 hours away.....more drugs......nothing worked for me.......it was pure hell......& some days I still have residual issues to deal with....but now I can function enough to make it through a day........THANKS DS!!! This place has helped me in so many ways!!!