Undifferentiated Connective Tissue Disease

Hang in there and I hope you can get off the steroids. So far, my hydroxychloroquine keeps my flare-ups "mild" (before I got on this, the pain was quite severe).

Hello, I have UCTD recently diagnosed to add to my list of AI diseases.. I have Rxs for Plaquenil and lowest dose anti-depressant for pain. I sleep 11 hours each night and would sleep longer if my little dog didn't wake me for potty. I am as active as I can be and eat well but I still fight fatigue. I have hit a plateau and sometimes I wonder if it will ever get better.

Hi @cinnamon215 -- I found a few links that might be helpful for members with a UCTD diagnosis.

What Does It Mean to Have Undifferentiated Connective Tissue Disease?
-- https://elizabethbarone.net/what-does-it-mean-to-have-undifferentiated-connective-tissue-disease/#

Cindy: Undifferentiated Connective Tissue Disease (UCTD)
-- https://sclero.org/scleroderma/support/stories/english/c/cindy/a-to-z.html

Heidi's Story:Difficult Diagnosis of UCTD - Sclero.org
-- https://sclero.org/scleroderma/support/stories/english/h-i-j/heidi/a-to-z.html

How nice of you, John! Thanks so much!

Hi John. Thank you for the links you shared re UCTD ... they were all informative.

Hi Everyone - I too have been recently diagnosed with UCTD. I am feeling a little bit frustrated because of its name, I feel like people don't think it is a real disease. In fact my husband, who is a very caring man, made a comment of this is getting in your head. As if my pains are made up.

As everyone has said there is not much information out there but I appreciate the articles that have been posted on the website. However I am curious on a few things: Does anyone have any of these symptoms:

- burning sensation in ankle. At night when I get into bed, the touch of the sheets can send an electric shock to my ankle.
- numb lips
-fuzzy head

The reason I ask is that I don't know if these are part of my flare up or other issues.

Also because I am new to this, during flare ups, do you exercise? I am runner but the other day I knew I shouldn't run because of my ankle were too tender so I went on a power walk. I was fine during the walk but once I got home, my whole body ached. I need to continue to exercise but would love suggestions on what are recommended exercises.

Hello @maryalicep, Welcome to Mayo Clinic Connect. I don't have UCTD but I do have degenerative arthritis and osteopenia along with a few other autoimmune conditions. I know that exercise helps a lot of us with different conditions but I try not to overdo the exercise if I'm having pain. Here is a link that discusses exercise and also has links to other articles that may be helpful.

- Exercise in patients with inflammatory arthritis and connective tissue disease: https://pubmed.ncbi.nlm.nih.gov/2087581/

Also the Genetic and Rare Diseases Information Center (GARD) has some information on UCTD that might be helpful: https://rarediseases.info.nih.gov/diseases/12342/undifferentiated-connective-tissue-disease

I think even just regular walking would be beneficial. Do you have any home exercise equipment or enjoy Yoga?

Thanks John! Happy thanksgiving to all

@maryalicep

I'd like to add my welcome to that of @johnbishop. I'm glad that you posted on Mayo Clinic Connect. I sense that you have a problem with the acceptance of your husband and others regarding your health condition. That is easy to understand, especially if you have a rare disorder.

I have a rare form of cancer and in spite of three surgeries, I really look healthy. I've been to support groups where others have this form of cancer, often with liver or lung metastasis, and we all look healthy and great. I understand that is one of those complications that can be hard to live with. I would suggest in order to deal with this problem you might begin to educate those who are closest to you about what this disorder really is. Perhaps you could print off the information in the links that @johnbishop gave and leave them for your spouse or other close family/friends to read. In this way, they can see a little of what you are dealing with from a scientific/medical standpoint.

When you have a chronic illness exercise is still important but the type and duration often need to change in order to avoid pain and injury. You might try tempering your exercise pattern so that it helps, but doesn't hurt. For example, you might try regular walking instead of power walking or an exercise bike (that has little to no impact) rather than high impact exercises. It takes time to adjust to a chronic illness and it is disappointing not to be able to do what used to be so enjoyable, but it is definitely worth the effort.

Does this sound helpful to you?

Thanks Teresa!