Undifferentiated Connective Tissue Disease

Ha! I would happily give you 50% of my joint tightness in trade for your joint hyper mobility if that was possible!

I did look into EDS and it really does not fit my pattern of symptoms, but I appreciate the thought to keep my mind open!

There are actually 13 forms of it and only one is w hyper mobility . But I’m sure you spotted that! I wish you well! It seems that each of us must find our own footprint that works! Blessings! And Tenacity!!!

@marymaryoregon @chevykat2 I recently found this article about autoimmune disease diagnosis. https://autoimmune.org/resource-center/diagnosis-tips/
It gives good information about getting a diagnosis.
What are your thoughts?

Hello @chevycat2! Nice to hear from someone else who has this nebulous problem. My blood tests were positive, now sort of negative,. symptoms remain, pain, hypermobile joints, increased now at time of great (unrelated) stress. Rheumatologist said 30% differentiate, 30% stay same, 30% go away. I'm in a holding pattern.
I hope you feel better!!!

I have multiple sclerosis and connective tissue problems with a history of rheumatoid arthritis and am chronically fatigued. I was given 5 mg Ritalin to take up to 3 x day and it has helped me considerably. You may want to ask your doctor if you could try something like that to help you to be more awake/alert throughout the day.🤷‍♀️

My live is like lemartin417. I have had good help with Ritalin at the 3x day. Just remember with the Autoimmune diseases they are attacking your system all the time, which is giving you the tiredness. Keep on it and in touch with your doctor. Don't just say this is how it is. Keep a positive attitude and not a poor me one. They have said I need to go on disability, and I refuse to give up. I still work full time because I love my job. I take off when I need to rest through intermittent FMLA. Good luck!

Hello all. I was diagnosed with UCTD but the meds were unbearable. I would take it and be vomiting within an hour. Tried injections and the same thing. I am allergic to a lot of medications age my body is highly reactive. Started a new Rheumy and he now said no not UTCD but wants me to at my primary for fibromyalgia, cold urticaria, joint pain and chronic fatigue, to my eye doctor and dentist for dry mouth and eyes, my neurologist for chronic headaches and essential tremors. It’s frustrating. My test 1:1280 every time. One test showed positive for RA but then the next didn’t. They didn’t test further after hitting the 1 positive. I know something isn’t right. The fatigue is horrible, the neuropathy comes and goes but can be awful. Chronic headaches last for months but auric to NSAIDs. I have ptosis of my eye. My kidney tests are abnormal. My mother died from ALS and I’m confident my father had Parkinson’s. I think he believes I’m looking for meds and I’m not. I’m looking for answers so I can research other ways to combat it all. I tried Mediterranean eating but ended up with stomach and bathroom issues. What do others do, besides medication?

@maggs413 I think you might want to find a new doctor who specializes in autoimmune diseases. I’m going to give you the name of an AD organization that keeps lists of doctors and what is going on in the AD world. You should be able get help from them.
https://rarediseases.org/
You may have to drive 1-2 hours but it’s worth it. I still drive, at least 1 hr in rush-hour traffic, to have appointments with my doctor.
I sure hope you’ll get the help you need! Write back to me and let me know what happens.

@maggs413 I have a diagnosis of UCTD and Sjogren's. I have had neurological symptoms for a long time, my father died from ALS and my husband has Parkinson's so I am pretty aware of the symptoms connected to those. I am on a fast learning curve regarding Sjogren's - it's highly common to have neurological impacts that can be systemic. Currently I have developed gastroparesis and just had a small nerve fiber biopsy that showed damage/loss of small nerve fibers in my leg, consistent with neuropathy caused by Sjogren's. The symptoms are very similar - including loss of muscle and drop foot. For years I have had various health issues which now are being seen through the lens of autoimmune. Your positive ANA and symptoms definitely warrant better investigation and oversight- a competent and well informed rheumatologist would not reach that conclusion, mine didn't and it's made all the difference. By the way, Sjogren's is often seronegative, meaning you might only test positive for ANA, and sometimes even that is negative. Keep reading up on this and hopefully you can find a smarter doctor💗

Hi bunnysammy,

I’ve sort of had a lifelong journey with different connective tissue disease, but in the beginning, it was very difficult. I wanted to know what was wrong with me and what to do.

Basically, my journey went something like this:
- 1998 swelling of my right knee, which was relieved by right knee synovectomy/removal of the lining of the joint. With two year recuperation, I have a five-year-old, three-year-old and a four month old baby. Life was challenging.
- right knee pain continued until I moved into a house that was wood floors instead of concrete slab.
- intermittent pain, so I tried knee braces, PhysicalTherapy 5 years, then 8 years of methotrexate
- I never had a positive ANA for the first 10 years and it was intermittent pain so one day because one day I couldn’t walk
- SED rate was slightly elevated, C reactive proteins was always good, vector score was always good, and RA factor was always negative
- so 20 to 30 years later I learned I have serum negative already, but it was called undifferential connective tissue disease for years. I still have a negative RA factor.
- I’ve been enjoying remission since 2022. I’m not taking any medication, bicycle, play, pickle ball, and go to ZUMBA!
- my hands are an issue, and I wear compression gloves during the day, then I put them in something soft and straight
- I wear KT tape when I exercise on my knees
- keep to a regular routine with lots of sleep, healthy food, lots of water, and lots of prayer
I hope this post is helpful. 🌺