Undifferentiated Connective Tissue Disease

Fibromyalgia maybe?

Could you please tell me how your doc came to this diagnosis? I was recently diagnosed with lupus, but I don't have typical symptoms and am wondering whether the doc who diagnosed me is mistaken.

So my understanding about UCTD is it’s for patients who don’t quite fit the full criteria for any one illness. I started down the diagnosis rabbit hole at an academic medical center near me last August. Rheum1 diagnosed “probable SLE” — lupus, even though I had no blood markers for it and frankly little specific symptoms. I grappled with fatigue and depression. I do have blood markers for Sjogrens and CREST syndrome. I decide to see Rheum2 who has more experience. She says she doesn’t see lupus in blood work or my appearance, but has pursued a CREST diagnosis. That too not definitive.

Bottom line, rheumatology can point in various directions but can be elusively definitive. Esp over time. Check out Dr Thomas’ posts on the Reddit Lupus Board. A lupus specialist, he has been amazingly helpful and can provide more clarity on UCTD. Good luck!!

BAYHORSE, Fibromyalgia does not show up in bloodwork. I have had it for 27 years. I had a sed rate done to rule out lupus, RA & MS. Fibromyalgia is usually diagnosed by the doctor palpating the 18 trigger points to see if you are tender in those spots. Fibromyalgia is accompanied by pain (which can be as painful as rheumatoid arthritis), soreness all over & stiffness. Not sleeping well can be a contributor to Fibromyalgia. I feel like I have been hit by a truck in the mornings when I get up and have to "ease" into my day. I keep moving as much as I can. Heat packs, massages, voltaren gel & soaks in epsom salt help me & also being on Mobic for inflammation as I have developed a lot of arthritis. Fibromyalgia can be so misunderstood. Hashimotos (hypothyroidism) can be mistaken for Fibromyaliga. I have both.
I pray you get some relief and answers. God Bless You!

When should we create our own website and patient support group?? If I only had the energy…

Hey @bayhorse - here’s my understanding of UCTD based on a pretty extensive review of available evidence (Medscape, UpToDate, and many many peer reviewed journal articles. I am a healthcare provider (but I do not work in rheumatology). Basically, a whole bunch of rheumatologists from around the world have come together and put together “classification criteria” for many rheumatologic (autoimmune) diseases. The classification criteria are strict and are used to include (or exclude) people from research studies. In real life (not research studies), individual rheumatologists have to use their best judgment about the patient’s overall condition/picture to determine if a diagnosis seems right (like lupus).

I’m both over-simplifying (and being a little tongue-in-cheek), but UCTD typically looks like a “mild” version of lupus, or RA, or Sjögren’s (or a combo of those). I think that the “mild” mostly refers to not often having severe damage to internal organs (like the kidneys) and not to the person’s symptoms. Unfortunately, that international group of rheumatologists has NOT gotten together to clearly define either “classification” criteria (for research) or diagnostic criteria (for real-world providers). Most providers and researchers use this definition of UCTD: positive ANA sustained over 3 years plus at least one symptom of a “defined” connective tissue disease (lupus, RA, Sjögren’s, etc.). Then, over the next 3-5 (or up to 15) years, one of three things usually happens: 1) symptoms go away completely 2) symptoms stay steady or 3) the person accumulates enough symptoms or new auto-antibodies to update the diagnosis to lupus or RA or Sjögren’s or MCTD, etc.

I see that you initially posted in 2018. If you have developed new symptoms or new auto-antibodies, that might be why your provider feels you have tipped into a specific category.

Thank you much for your explanation. I just posted a few weeks ago, so the 2018 date must have been related to an older thread. I was just diagnosed with lupus this past July. I am 71 now. But I got celiac disease and Ulcerative colitis in my early 30s, and was also diagnosed at the time with chronic fatigue syndrome. I never recovered from the CFS; if anything it got more and more debilitating. And while the worst of the celiac spruce symptoms -- severe nausea -- was controlled with the gluten free diet, I never recovered my energy. So the past 40 years have been basically a search for ways to function. I have had positive ANA in the past, but apparently not other factors which together would have netted the lupus diagnosis. Now apparently all the required ones are present. So I guess I belong to your "category 3." I really appreciate your explanation. My physician is not very forthcoming, in spite of my questions. Hence my presence in this group. BTW, you say you are a practitioner, and am wondering what your field is. In any case, thanks again!

@bayhorse - I wrote a long reply while I was riding in the car this weekend, and I lost cell service and it didn’t save!

I am so pleased my explanation was helpful! Perhaps setting up some kind of website for UCTD would be helpful after all.

I am a family nurse practitioner and I have worked some in primary care but mostly I have worked in sexual and reproductive health.

It sounds like you (like many people with autoimmune diseases) have accumulated more diagnoses as time goes on! Got any tips or tricks for me about making it through the days and weeks and years? I’ve found that hearing other people’s stories is really helping me to: 1) believe it is real and 2) understand I’m not alone.

Hi…..reading through all of these I thought I would give you something else to consider……just what you want right?? !!! ……anyway…..so much of what you convey is my life with Ehlers-Danos Syndrome …..which is a connective tissue disorder of basically inferior collagen…..which is of course everywhere!!! Everywhere !!! In the body…….some are affected so badly internally and some with all of their joints and some both!……skin, internal organs, joints…..you name it. That would be me. There are actually 13 types but the most common that I also have, is hypermobility type. I am full of titanium fixing and replacing joints, as well as having a lot of poorly perfecting internal systems repaired or removed due to connective tissue issues. I recently read on my EDS site that there are people being diagnosed with what you have when perhaps they actually may have EDS. EDS community went through this over 10 years , 1995-2005, of trying to address the many different kinds and categorizing them. It is just recently that you tell a doctor and they don’t look at you blankly. The younger doctors are getting in in med school…..finally. If you want a scale to use look up the signs for it and also do the Brighton Scale as that is very good but only really about the Hypermobility one. I am also 72 and have had all the very loose skin, that often comes w this, removed!….Best gift my hubby ever gave me!…..I am dealing w a lot but I look good! Lol! Take good care!……there is an army of information on this now! Terri

Hi, I would like to be added also. Hopefully this group picks up as others find it as I did today. There are so many questions. I have read many conflicting answers to my questions about UCTD. Very confusing.