1. < Autoimmune Diseases

How do you cope with Mixed Connective Tissue Disease (MCTD)?

Posted by Cindi A @cindia1, Feb 5, 2013

Would someone else please join this discussion and let me know how you cope with Mixed Connective Tissue Disease? How can you explain it to your family and friends when they just do not understand? How can I explain it to my doctors? Myself?

I am always tired. Extremely tired. Weak. Do not feel well.....ever. Then at various times, I have problems or flares with several different issues. I always seem to struggle with the neuropathy in my feet and or the raynauds or just swelling and pain. The GI problems are endless. Though they have talked about someday I may have to have a feeding tube, I have always fought that. But with this dismotility and Barretts, some days I actually think just do it and get it over with. I am tired of the pain and wondering what to eat, what I CAN eat.

My skin hurts. My joints hurt. And I feel like I am losing my mind some days. I hate when I feel all whiny and negative. That is not me but darn it all, I hate these illnesses.

The doctors all say to join a support group. Where and which one? Lupus? Scleroderma? Raynauds? Sjogrens? I am at a loss so turned to this site.

Any advice would be helpful. Or just knowing there is someone else out there going through the same thing and understands!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

marye2 | @marye2 | Dec 8 7:58pm
In reply to @francesalfs "Hello everyone feeling and dealing with mctd this is my first connection. I was diagnosed 3..." + (show)
@francesalfs

Hello everyone feeling and dealing with mctd this is my first connection. I was diagnosed 3 months ago and it had been a huge psychological adjustment. I was always able to do all sports to quite a high level for my age 73. I would place in cross country, biking
and running events . Now I can't it was a big part of my social and fun life. I'm learning to do mobility yoga water aerobics and other things. Luckily I like to swim. Pain management is hard. If anyone has ideas besides euthanasia let me know..just kidding but sometimes I feel that way. I 😘 like having my wits about me but pain is exhausting. I feel for all of us learning to live and enjoy this life and the people we love. I want to stay happy to and care about others.

Jump to this post

I kept all my PT exercise info, added some yoga and I do it whenever needed. It would be better on a schedule, but I am bad at that. I go to a Pain Dr and have a small dose of Percoset for nighttime: with good sleep, I can have good days. Topical things I use: splints for wrists, knee, lidocaine 4% patches on the main pain spot (avoid using several at one time), magnesium spray or epsom salt baths, quality CBD ointment on joints, cold/hot packs. I find swelling in legs is helped with compression socks, or legs up the wall for twenty minutes at the end of the day. I use edema massage (toes to torso, fingers to torso) as needed.

REPLY
1 reply
dkelban | @dkelban | 6 days ago
In reply to @marye2 "Tramadal gives me diarrhea and nausea. I had to rename it as "damnitall." Glad it helps..." + (show)
@marye2

Tramadal gives me diarrhea and nausea. I had to rename it as "damnitall." Glad it helps you!

Jump to this post

Sorry to hear that. My wife has the same reaction to opioids. I love your nickname for tramadol. I hope you find something better.

REPLY
kleffew | @kleffew | 6 days ago

I am so sorry that you're going through this. What?
Kind of medications are you on?
So far, mine work. I still deal with cramps in my ankles and feet. I take a muscle relaxer for the tiredness. Gets better, but you cannot explain it to people. Specifically, I have darma Tamayo Sadas, which is my skin and my muscles.All I can say is keep fighting.God bless you

REPLY
kleffew | @kleffew | 6 days ago

Dermatomyositis my phone changes words

REPLY
francesalfs | @francesalfs | 6 days ago
In reply to @marye2 "I kept all my PT exercise info, added some yoga and I do it whenever needed...." + (show)
@marye2

I kept all my PT exercise info, added some yoga and I do it whenever needed. It would be better on a schedule, but I am bad at that. I go to a Pain Dr and have a small dose of Percoset for nighttime: with good sleep, I can have good days. Topical things I use: splints for wrists, knee, lidocaine 4% patches on the main pain spot (avoid using several at one time), magnesium spray or epsom salt baths, quality CBD ointment on joints, cold/hot packs. I find swelling in legs is helped with compression socks, or legs up the wall for twenty minutes at the end of the day. I use edema massage (toes to torso, fingers to torso) as needed.

Jump to this post

I will need advice on quality CBD oil . I did have a wonderful CBD massage here now in Mexico on vacation. Warm weather and sand feels so good.

I found a mobility yoga I like .

REPLY
1 reply
francesalfs | @francesalfs | 6 days ago
In reply to @dkelban "I also use a mild opioid, tramadol (Ultram), which helps both fatigue and mood." + (show)
@dkelban

I also use a mild opioid, tramadol (Ultram), which helps both fatigue and mood.

Jump to this post

Thanks

I need to figure out my pain mansi. Thanks for your ideas I appreciate it. I know predisone works but not cool.

REPLY
francesalfs | @francesalfs | 6 days ago

Hi there. You are in a bad way. I'm struggling like you with my feet and hands and wrists. I wake up and think that is my pain how do I try to stay ahead of it to have the best day... really a weird new normal
Please know that you are not alone. I appreciate your writing back. Take care.

REPLY
marye2 | @marye2 | 6 days ago
In reply to @francesalfs "I will need advice on quality CBD oil . I did have a wonderful CBD massage..." + (show)
@francesalfs

I will need advice on quality CBD oil . I did have a wonderful CBD massage here now in Mexico on vacation. Warm weather and sand feels so good.

I found a mobility yoga I like .

Jump to this post

I buy Happy Salve from Kuumba https://www.kuumbamade.com/products/happy-salve

Some grocery store versions are less than effective. I put it where the worst pain is. I used to buy Ibuprofen 10, which may be available in Mexico.

REPLY
dkelban | @dkelban | 6 days ago
In reply to @believe1 "I have had terrible fatigue as well... my answe to everything:hand pain, fatigue, lupus symptoms... is..." + (show)
@believe1

I have had terrible fatigue as well... my answe to everything:hand pain, fatigue, lupus symptoms... is sweating it out on my bike.... i can't believe how much it help me... i just got over my first real flare. It lasted 9 months. Looking back at my lufe i have had flares, but nothing as identifiable as my current condition. I didn't think I'd ever emerge from that flare... obviously I'm not symptom free, but not nearly as bad... im trying to manage so much... just over a week ago I realized the onset of gastropheresis - again, really complexes things but I'm working through it... my hands are a never ending battle that I seem to be mostly managing... i struggle with Dryness but am getting by...

Jump to this post

A 9-month flare?? Christ! That sucks. Best wishes for improvement.

REPLY
dkelban | @dkelban | 6 days ago

I'm sorry to hear that you have it so bad. It seems we're all stuck with tackling the disease by a seperate medication for each manifestation, trying to get mild exercise and adequate sleep, and hoping for some periods of relative remissions. Plaquinil has helped me a lot with dryness, wherever it appears, and tramadol (mild opiate) has helped with the fatigue and the blues. Best of luck, and be sure you have a top rheumatologist.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.