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

Autoimmune Diseases | Last Active: 2 days ago | Replies (107)
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@anon27700552

I'm 22 and was diagnosed at 18 with scleroderma. What you described has been exactly how I felt over the past 2 years. I am currently classified under MCTD as I'm exhibiting multiple symptoms of all AI. The way I cope is I try and stay as active as possible and as hard as it sounds I try and think about something else.. My last hospitalization due to severe dehydration and malnutrition almost landed me a feeding tube but thankfully they tried nitroglycerin which helped a bit. It's not an easy road. Lean on friends and family if you can I know it's hard for them to understand but I explain to them it's like having a constant flu. Also there is a MCTD support group but I also when I was first being diagnosed found support in the scleroderma one..

Good luck and prayers
-Jessica

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Replies to "I'm 22 and was diagnosed at 18 with scleroderma. What you described has been exactly how..."
Cindi A | @cindia1 | Feb 25, 2013

Thank you Jessica for your response. I so appreciate it.

I too suffer from malnutrition and the doctors say the feeding tube is inevitable. I am believing that I will never have to have it, but as I am writing this I am in a "cycle" as I call it when I am unable to eat and throw things up because of the esophageal motility issues. Sometimes the cycles last months, at times only weeks.

A bad flu is a great way to describe the general feeling of fatigue and just not feeling well. The pain can be extreme but depends on the day and activity.

Sorry to hear that you are going through so much at your young age. I will pray for you.

~Cindi

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