UCTD and soreness from sun?

Yes, people with auto-immune diseases often find their aches and pains increase with sun (or fluorescent light) exposure. I also find my temperature has a tendency to shoot up if I'm in the sun.

There are several lines of sun protective clothing (Coolbar comes to mind.) Also, of course, there are hats! And sunscreen. And a couple of brands of sun protection that you add to your washing machine that then produces sun protective clothing.

Stay in the shade - also remember that any body of water is a huge reflecting pool and you'll get more sun around water. Keep your body cool - lots of ice water!

That's all I can think of right now - will add more if I think of it. You can also use the search feature to search for "sun" to see older discussions on this topic.

The sun increases disease activity in general. Not just things you can see like skin issues. You can also purchase a wash in laundry product.

http://www.sunguarduv.com/

I have a script from my dermatologist.

No sun for folks with auto-immune diseases, especially not the concentrated fake sun of a tanning bed!

Hey NDCHEG!

I am 29 years old and my symptoms include - memory loss (brain fog - forgetting tasks, names, words, etc), hair loss, red, achy, swollen hands, feet and ankles, malar rash, body aches (flu like), night sweats.

Now since being diagnosed, my rheumy has also let me know that little things I have been "dealing with" are also part of it - dry eyes and mouth, migraines, feet freezing and then getting extremely red and hot, etc.

My biggest complaint is the joint and nerve pain. Its very hard for me to even walk some days. Especially early in the morning, it takes me a good amount of time to get moving. Just getting out of bed is a chore.

During very bad flare ups, my arms ache tremendously. It feels like they weigh a ton and they're just going to fall right off my body. And you know that feeling when you bang your elbow on something and it sends a shooting pain down your arm - I have that shooting pain constantly down my arms during a flare.

I've also noticed, although I'm not sure if this is UCTD related, I'm having borderline blackout spells. My body gets very heavy, shaky, I experience tunnel vision and ringing in my ears, and I have to sit down/ lay down wherever I am. Anyone around me says they ask how I am / if I'm okay - and I'm unable to respond and that my body is limp. My heart rate and blood pressure get extremely high during these episodes. But it is not my blood sugar - its checked almost every time. After about 5 minutes - I come out of it, sit up, and I recover, like nothing happened... anyone else experience this or know what this could be?

Yes, NDCHEG,

I have had my thyroid checked by my primary, but she says its normal. My mother and all her sisters have thyroid issues. And 3 of my cousins have hashimotos, but my doc says that everything is within normal range with my thyroid... I might need to have a second opinion though.

I also have the burning sensation. Mainly on my face. Sometimes the rash will show up, and sometimes it will not.

I have a desk job (thankfully) so I do go to work everyday. But I keep a heater on under my desk, because my feet tend to stay cold, and when they get cold, the pain gets worse.

I was feeling better yesterday, and I did a slight workout - I'm paying for it today...

Hope you are feeling better!

Hi Upstater-
So my ANA is homogeneous and 1:640. I've also had another test that was 1:320 with 2 patterns: homogeneous and nucleolar. Both of these were run in 2016. I've had impingement issues/frozen shoulder out of the blue 2X with my right shoulder (2009 and 2015) and now with my left shoulder. It typically takes about 1-1.5 years for the symptoms to completely go away from these flare ups. The first time this occurred I thought it might be related to my Hashimoto which ended up getting diagnosed around 2011 BUT looking back at lab work, my PC doctor suspected something more serious AI because she ran ANA on me in 2010 which was slightly positive at 1:80 and homogeneous- this is typically not done for suspicion of Hashimoto AI. She never said anything to me...I just found these results online when I started really paying attention to my blood tests. I don't have any positive antibodies, but I have low C3 and C4 complement, low white blood cell count from time to time, and typically am low end of the range for Vitamin D. Now that I truly understand the importance of Vit D levels, I supplement like crazy and am finally closer to the upper end of the normal range. I wish my PC had warned me more about the importance of Vit D - she saw issues with this back in 2010 and just lightly explained that I should be taking a supplement. She never pressed on me the critical position I was in with being borderline issues with AI, and even when she diagnosed me with Hashimoto, she just brushed it off as something really common. I didn't start learning about any AI until about this time last year when I wasn't getting any relief from my frozen shoulder with PT/steroid shots and was starting to get pain radiating all over my upper body, tingling and numbness in extremities, and couldn't sleep laying down anymore. I figured it must be something with Hashimoto, so I started researching. Finally, I was seeing a physiatrist who ran the ANA on me along with many other tests looking for diabetes, MS, etc. Once I came up ANA positive, she sent me to the rheume - it took several months after this and lots more weird symptoms that kept coming on quickly then a visit to Duke University Scleroderma Center set up through a college friend of mine when I was finally diagnosed with UCTD in Dec. My local rheume kept telling me I was a very healthy woman and needed to go on with my life. I'm no longer with her. I'm on close vigilance now because I understand that there is always a small chance that the UCTD could turn into full blown SLE, scleroderma, Sjogrens, etc. I'm still trying to figure out what causes me to "flare" although I don't describe mine as flares yet because I'm not bed-ridden ever, just feel crappy from time to time. I'm always achy and sore - this is just a way of life that I manage through yoga, good rest, and healthy diet. This will be my first summer after diagnosis and will truly be a test for me because I'm typically in the sun a lot just because I love the outdoors, so I'm really being careful. Last week, my lips swelled up with tiny tiny blisters all along the edge of them, and it took a week to get over the pain and discomfort from this - I suspect I might have been outside too much in spite of my caution with limited exposure and lots of sunscreen. My skin is starting to tingling and "burn" in localized areas but no rash so far. My face gives me a lot of "hot" feelings but I don't really see a distinct malar rash. Thanks for posting and sharing your experience. This is very helpful to me because there's just not a lot of info out there about UCTD, and I'm finding that my experience has been common with many who have this although we all know that each persons particular situation is unique with all these AIs. Take care of yourself!

NDCHEG (aka Laurie)

I think I wrote my response on the wrong page. Sorry. Dustmite