Undifferentiated Connective Tissue Disease

Here’s my story: for a long long time, I thought I had “allergies” which caused itchy eyes and itchy skin and rare days where I felt like I was fighting off a cold and had no energy. A couple decades go by and I decide I’d like to find out what I’m allergic to because perhaps I could get allergy shots or something that would help symptoms more. Turns out, I don’t have any allergies from the typical skin testing panels. So once I had to throw away “allergies” as the reason for my symptoms, it occurred to me that perhaps it was still my immune system but not because of a specific allergic-type response.

Fast forward about 2 years and I finally did some testing and had a positive ANA test (1:320). Aha! I decided I had Sjögren’s syndrome because of my dry eyes and mouth (I’m a healthcare provider from a family of providers so self-diagnosis is kind of a thing we do). During 2020, my referrals to rheum were rejected (apparently the person helping to prepare the referral simply wrote “fatigue” as the reason) and it made me sit and think deeply about what a “diagnosis” meant to me and what I really wanted from a rheumatologist referral.

At that time, I really only had dryness and periodic fatigue (egads, the fatigue). What I concluded was that I really only wanted a visit with rheumatology to: 1) validate my clinical judgment (was I on the right track with Sjögren’s?) and 2) validate that I had “something” and thus was allowed to have symptoms. Once I came to that understanding I was able to say to myself, “Hey, I’m not a rheumatologist so it’s no big deal if I don’t have the same clinical expertise! Also, how about I give MYSELF permission to feel yucky when I’m feeling yucky? I’ll do that! Permission granted to feel yucky if needed.”

After a completely terrible 2022- I eventually felt the absolute worst I ever have (both physically and mentally). Crushing relapse of depression on top of constant stomachaches on top of major fatigue. I finally started making appointments to be seen and figure out a path forward- got my iron deficiency anemia corrected and my tummy feeling better and all checked out, worked with mental health on adjusting meds and restarting therapy, and got an updated referral to rheum. I don’t know about your community, but you’re probably going to wait 3-6 months here for a routine rheum referral. By the time I was seen, I was already feeling SO MUCH better as my depression started to wane, my iron levels corrected, and my gastritis faded.

I don’t have Sjögren’s (at least for now!), but I did feel very validated that I do have some “autoimmune” thing which we are loosely calling undifferentiated connective tissue disease (UCTD). About a month after my appointment I realized I was really experiencing more joint pain than I used to and asked to start on hydroxychloroquine to see if it might possibly help with that plus with fatigue (maybe?). Still too soon for me to tell as I’m not even a month in yet, but I’m cautiously optimistic.

Things that I struggle with nearly every day:
*Having some ill-defined disease that you (and other people) can’t see completely messes with my head. I continue to ask myself “Am I just making these symptoms up?”
*The not knowing how things will go- I think that’s the case with many chronic illnesses, but it’s such a roller coaster when you can have such big ups and downs symptom-wise. I basically don’t commit to plans anymore because I don’t know if I’ll have enough energy to follow through with those plans.
*Staying out of the sun- I was a vampire before I had a positive ANA because I burn so easily, but I feel like my tolerance for UV exposure is even less and it’s really a pain!
*I feel guilty about complaining because there are so so so many people who have many more symptoms and more severe symptoms than I do.
*I’m struggling with the idea that this is my new reality. Part of my brain still thinks things like “well, when I’m back to normal then I’ll sign up for and train for that triathlon.”
*Aside from social media, I haven’t yet found a patient support or advocacy group for UCTD and I feel too tired much of the time to create one. Or perhaps I just want some better information out there to show up when you Google UCTD.

Here’s my story: for a long long time, I thought I had “allergies” which caused itchy eyes and itchy skin and rare days where I felt like I was fighting off a cold and had no energy. A couple decades go by and I decide I’d like to find out what I’m allergic to because perhaps I could get allergy shots or something that would help symptoms more. Turns out, I don’t have any allergies from the typical skin testing panels. So once I had to throw away “allergies” as the reason for my symptoms, it occurred to me that perhaps it was still my immune system but not because of a specific allergic-type response.

Fast forward about 2 years and I finally did some testing and had a positive ANA test (1:320). Aha! I decided I had Sjögren’s syndrome because of my dry eyes and mouth (I’m a healthcare provider from a family of providers so self-diagnosis is kind of a thing we do). During 2020, my referrals to rheum were rejected (apparently the person helping to prepare the referral simply wrote “fatigue” as the reason) and it made me sit and think deeply about what a “diagnosis” meant to me and what I really wanted from a rheumatologist referral.

At that time, I really only had dryness and periodic fatigue (egads, the fatigue). What I concluded was that I really only wanted a visit with rheumatology to: 1) validate my clinical judgment (was I on the right track with Sjögren’s?) and 2) validate that I had “something” and thus was allowed to have symptoms. Once I came to that understanding I was able to say to myself, “Hey, I’m not a rheumatologist so it’s no big deal if I don’t have the same clinical expertise! Also, how about I give MYSELF permission to feel yucky when I’m feeling yucky? I’ll do that! Permission granted to feel yucky if needed.”

After a completely terrible 2022- I eventually felt the absolute worst I ever have (both physically and mentally). Crushing relapse of depression on top of constant stomachaches on top of major fatigue. I finally started making appointments to be seen and figure out a path forward- got my iron deficiency anemia corrected and my tummy feeling better and all checked out, worked with mental health on adjusting meds and restarting therapy, and got an updated referral to rheum. I don’t know about your community, but you’re probably going to wait 3-6 months here for a routine rheum referral. By the time I was seen, I was already feeling SO MUCH better as my depression started to wane, my iron levels corrected, and my gastritis faded.

I don’t have Sjögren’s (at least for now!), but I did feel very validated that I do have some “autoimmune” thing which we are loosely calling undifferentiated connective tissue disease (UCTD). About a month after my appointment I realized I was really experiencing more joint pain than I used to and asked to start on hydroxychloroquine to see if it might possibly help with that plus with fatigue (maybe?). Still too soon for me to tell as I’m not even a month in yet, but I’m cautiously optimistic.

Things that I struggle with nearly every day:
*Having some ill-defined disease that you (and other people) can’t see completely messes with my head. I continue to ask myself “Am I just making these symptoms up?”
*The not knowing how things will go- I think that’s the case with many chronic illnesses, but it’s such a roller coaster when you can have such big ups and downs symptom-wise. I basically don’t commit to plans anymore because I don’t know if I’ll have enough energy to follow through with those plans.
*Staying out of the sun- I was a vampire before I had a positive ANA because I burn so easily, but I feel like my tolerance for UV exposure is even less and it’s really a pain!
*I feel guilty about complaining because there are so so so many people who have many more symptoms and more severe symptoms than I do.
*I’m struggling with the idea that this is my new reality. Part of my brain still thinks things like “well, when I’m back to normal then I’ll sign up for and train for that triathlon.”
*Aside from social media, I haven’t yet found a patient support or advocacy group for UCTD and I feel too tired much of the time to create one. Or perhaps I just want some better information out there to show up when you Google UCTD.

Thank you for your thoughtful post. I can soooooo relate to you! I just slept 10 1/2 hours and still feel tired! I under commit to things and wonder what is really wrong with me. I have elevated RF and IGM but low levels of white blood cells, red blood cells, C3,C4 complement serums, IGA. I have 2 M-spikes one IGM and one IGG but at low levels. I’ve taking medication for hypothyroidism and hydroxychloriquine. One salivary gland is irregular but the size has shrink but to normal. It’s not Sjogren’s because it is only on one side. One ear drain tube is dysfunctional. And my lungs have numerous nodules and “cut glass”……I exercise on a treadmill maxing out the incline setting for 30 minutes and lift weights every other day as well do intermittent fasting so my weight is fine and I eat organic only and vegan cook at home. Anyways, thanks for listening as I tread along and try not to obsess and focus on the present moment 😊

@cherylmcg - what’s really wrong is that your immune system (this super complex and totally not fully understood thing) is dysregulated. And mine too!

It’s so much more complex than, say, hypothyroidism. Thyroid hormones low = add thyroid hormone = person usually feels much better.

If your immune system has developed antibodies that attack your body instead of not your own cells? There’s no straightforward treatment for that. Hydroxychloroquine is a good start as it has multiple actions that regulate immune function. You can’t just turn off the immune system - that could be way worse! Maybe my system actually is too slow clearing naturally dead cells and that’s what revs it up to attack mode? Maybe someone else’s system is revved too high to start with and starts increasing the rate of cell death? Those are both totally made up examples, but my point remains that: 1) you totally have a real thing 2) that real thing is super complex because it relates to the immune system and 3) it’s hard to know how to feel better while you are living it.

Major major kudos from me on exercising and eating well!! My puppy doggy is pretty successfully getting me moving most days, my diet of overly processed foods needs a ton of work though. Baby steps!

Thank you for your thoughtful post. I can soooooo relate to you! I just slept 10 1/2 hours and still feel tired! I under commit to things and wonder what is really wrong with me. I have elevated RF and IGM but low levels of white blood cells, red blood cells, C3,C4 complement serums, IGA. I have 2 M-spikes one IGM and one IGG but at low levels. I’ve taking medication for hypothyroidism and hydroxychloriquine. One salivary gland is irregular but the size has shrink but to normal. It’s not Sjogren’s because it is only on one side. One ear drain tube is dysfunctional. And my lungs have numerous nodules and “cut glass”……I exercise on a treadmill maxing out the incline setting for 30 minutes and lift weights every other day as well do intermittent fasting so my weight is fine and I eat organic only and vegan cook at home. Anyways, thanks for listening as I tread along and try not to obsess and focus on the present moment 😊