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Posted By : NDCHEG - 4/17/2017 1:15 PM
Hi-I'm new to this site and also new to UCTD since I was just diagnosed in Dec 2016. I had lots of muscle soreness, rashes, frozen shoulder out of the blue, lots of fatigue, peripheral neuropathy, and other symptoms along with high titers of ANA, low C4 and C3, and low WBC that resulted in my eventual diagnosis. I also have a mild version of Hashimoto (< 60 TPO AB levels). It's hard to tell what is making me feel just not as good as I used to.

Over the winter, my muscle and joint aches minimized along with rash, but now that I'm out in the sun for relatively short periods, I've noticed that my aches and pains are coming back along with hands and feet swelling slightly and feeling "arthritic" - no rash yet, though. Does anyone else end up with just feeling more achy from exposure to the sun? If so, do I need to be concerned that it will get much worse if I spend more time in it over the summer? My daughter is getting married outside in July (in the Midwest region), and I'm a little worried about making it through that day without the swelling, discomfort, and fatigue that seems like is coming from sun exposure.

Thanks for the input!

NDCHEG

Posted By : Lynnwood - 4/17/2017 2:21 PM
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.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : NDCHEG - 4/17/2017 2:25 PM
Thanks! I love the outdoors and the sun, so this is going to take some creative adjustment on my part! I just thought when the doctor advised me to avoid the sun, he was referring to rashes. I have a lot of learning to do about my new disease!
Hashimoto, Undifferentiated Connective Tissue Disease, GERD, and Mitral Valve Regurgitation

Posted By : Tinkerbee - 4/17/2017 3:01 PM
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/

Posted By : Lynnwood - 4/17/2017 3:44 PM
Getting the darkest legal tint on your car windows can be helpful.

I also learned recently that if you have huge issues, you can get darker-than-normally-legal window tint with a Drs prescription. Laws vary state by state, but it's an option!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Tinkerbee - 4/17/2017 3:46 PM
I have a script from my dermatologist.

Posted By : bamablondie - 5/8/2017 3:11 PM
I FINALLY went to the doctor and got diagnosed because I had a TERRIBLE flare -- after, get this!, joining the tanning bed! I had always had really bad symptoms but my primary doctor kinda just shrugged her shoulders at me saying she couldn't figure it out.

After joining the tanning bed and my rash, swelling, and pain got tremendously worse, I finally went to a rheumy who said that tanning bed caused a flare up! He did all the test and as for now I'm diagnosed with UCTD.
Life is tough, my dear. But so are you.

Posted By : Lynnwood - 5/8/2017 4:03 PM
No sun for folks with auto-immune diseases, especially not the concentrated fake sun of a tanning bed!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : NDCHEG - 5/10/2017 12:39 PM
Hi bamablondie-
Glad to hear you have an "answer" for your symptoms now. I'm also recently UCTD diagnosed - Dec 2016. I'm still trying to learn my way into what causes me flares ups/what doesn't/what is a UCTD symptom and what is just my aging process (I'm 51). When you mentioned that you had "bad symptoms", do you mind sharing with me what they were and what you thought caused them? I know everyone's disease is different, but there are also many similarities. There's not a lot of research and info out there concerning UCTD since we are the ones who don't have organ involvement (although I have noted heart valve issues that were found as part of my symptoms/checking into them). Cardiologist and rheume won't conclude that this is from AI, but they also won't say it isn't.

Thanks,
NDCHEG

Posted By : bamablondie - 5/10/2017 1:30 PM
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?
Life is tough, my darling, but so are you...

Undifferentiated connective tissue disease, endometriosis, OCD, depression, anxiety, GERD, migraines, IBS

Posted By : NDCHEG - 5/11/2017 6:18 AM
Hi bamablondie-
Thanks for sharing, and I'm sorry you're so young and dealing with so much with your health. Although I'm much older, I've been VERY healthy my entire life taking care of myself with exercise, rest, and eating well. When I first started having weird symptoms and chasing different doctors about 2 years ago to figure out what was wrong with me, I couldn't accept that I was "just getting old". I share many of the same symptoms as you, but on a scale of 1-10, I would say my worst days are 5-6 meaning I still go to work, I feel 80 years old on those worst days, but I have NEVER been at a point where I don't feel I can get out of bed or need to stay in bed all day. I have swelling that is noticeable, but minor again in both hands and feet. My veins REALLY swell from sun/heat. My feet lately are giving me some problems as they feel like I now have knots on the outside edge of the bottom of them, and so it's uncomfortable to walk on them particularly in the morning. Have you also noticed that you get areas on your skin whether it's your face, arms, or legs where a patch of skin just starts burning like someone has put a hot iron on that spot? That symptom comes and goes with me, and I think it's linked to the sun exposure. I, too, have had lots of nerve things going on with painful shooting sensations (and also tingling/areas of numbness) down my arms and into my chest, across my shoulders, and sometimes from my knees down to my feet that at the worst point made it difficult for me to lay in bed all night. about a year ago, I found a fantastic PT who does dry needling on me and also myofascial release massage on me for my upper body, and it's a life saver. Within a week of going to her about 3 times, she had me back sleeping in my bed all night. I go to her whenever I start getting really "tight" and overly uncomfortable with my daily normal muscle and joint aches. I highly suggest you start studying up on diet and supplements if you haven't already done so since these changes have also been helping me feel my best plus this has eliminated any issues I started having with GERD. Have you had your thyroid tested (function of it and also presence of AI anti-bodies suggesting you have a thyroid AI?) I'm not sure which of my 2 AI's I had first, but my thyroid AI, Hashimoto, showed up first. It's common to have this with other AI's. I have 3 daughters, so I'm constantly listening to what's going on with their health in case I think they've started with something like what I have - we have a strong family history of thyroid AI's.

Take care,

NDCHEG
Hashimoto, Undifferentiated Connective Tissue Disease, GERD, and Mitral Valve Regurgitation

Posted By : bamablondie - 5/12/2017 11:33 AM
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!
Life is tough, my darling, but so are you...

Undifferentiated connective tissue disease, endometriosis, OCD, depression, anxiety, GERD, migraines, IBS

Posted By : Upstater - 5/22/2017 6:15 PM
Hi NDCHEG,

Very similar stories. I was dx with UCTD in Feb. We are about the same age, and my complaints have mostly been skin issues and muscle pain in thighs.....and like joint/tendon pain in wrists/hands. I also had shoulder "impingement" (limited range of motion and pain) in one shoulder for no reason. My face does get very red at times....and feels like it's burning. I did get dx with discoid lupus from a biopsy on my scalp. The muscle pain had pretty much gone away in November, but now seems to have flared up again.

What was your ANA titer/pattern?

Posted By : NDCHEG - 5/23/2017 6:25 AM
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)

Posted By : Dustmite - 7/10/2017 2:04 PM
Hi. I just read about your. passing out. I have the same problem, it comes on very fast and I can't stop passing out. The last time this happened was Nov. I continuously passed out for half a day. Now in July I have a cardiologist for the first time. (High blood pressure since my 20's and I'm now 57.) I was hospitalized in Nov before my diagnosis of lupus. I was dehydrated and my potassium level was extremely low. Same thing happened in Sept and June. I'm being tested for Addisons (sp?) disease. I'm still learning about it but it has to do with your adrenal glands. It can be the cause of my very high blood pressure that can't be controlled with the four meds I'm taking. My thyroid problem. My low potassium level, my stage 3 kidney disease and the passing out that comes out of nowhere fast. ( a lot of times when I'm very stressed). This may sound odd but I really hope when I go over my blood test results this week that it's Addison's. It would answer so many questions about where all these diseases that have attacked my body have a starting point and a name. Adrenal glands, adrenalin. Ask your doctor. Most doctors don't even look at this. And all it requires is changing my medications. And there is a possibility of non cancerous tumors on the adrenal glands. I'm willing to do whatever is necessary at this point to get answers and work on solutions. I hope that you get the answers you need soon. God Bless You and Your Family. Dustmite

Posted By : Dustmite - 7/10/2017 2:11 PM
I think I wrote my response on the wrong page. Sorry. Dustmite

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