Any other Dis'ers with UCTD?

[mickeymedic]

After several months of experiencing unexplained symptoms my new doctor has tentatively diagnosed Undifferenciated Connective Tissue Disease or UCTD. Anyone out there deal with this? Have you progressed into something more defined? How long did it take to get a firm diagnosis?

Also, has your illness interfered with your job? What modifications have you had to make to your work routine to make it through the day?

Thanks!

 

[Boo Bear]

I was diagnosed with something similar about 9 years ago. Now they call it fibromyalgia. At first people called it a crack pot diagnosis but now there are commercials about it and a medication called lyrica. The symptoms are chronic pain and inflammation in the connective tissue.

I have chronic pain all over my body almost constantly and most of the time it's hard to put a finger on precisely where I hurt. Most of the time it's in my back and rib area and primarily at the top of my vertebrae at the base of my skull. I also get a lot of pain and swelling in my hands (swelling mostly in the soft tissue between my thumb and forefinger). It happens a lot when the atmospheric pressure changes. Lyrica helps a lot but its sad to say that the pain is so severe that I have to take narcotic pain medication almost on a daily basis for durations of time. Sometimes I go months without having to take anything. I think experts just don't know enough about it yet to be able to fully articulate the specifics of the disease and it's causes, and how to predict how it'll behave.

 

[Boo Bear]

I have a few more things to add...

I've been diagnosed with a few things in the past that can now be attributed to fibromyalgia... things like irritable bowel syndrome (kind of reversed symptoms that typical). I also have high oxalate levels in my body which can be caused by fibromyalgia. The oxalate levels also give me strongly calcified kidney stones constantly if I don't take my dietary supplement of potassium citrate (long story but is a factor in the whole scheme). Chronic fatigue is also attributed to the disease. I have low bone density in my feet so I get stress fractures often if I wear the wrong kind of shoe for a long stretch of time (like my croc sandals at work....)

To answer your question about coping with work and all... I have to try to put myself above the disease mentally. Most of the time it's a grueling struggle to make it through the day.... and the pain meds make me very sleepy most of the time. It's all about state of mind really... my mood dictates my day. If I'm feeling strong that day, then it'll go by faster. If I'm exhausted, I struggle. You have to be above it all. Ask your doctor about lyrica though, it really might help you... even within a day or two of beginning the medication. Good luck!