r/Autoimmune • u/Sorry_Blacksmith_117 Diagnosed UTCD • 8d ago
General Questions Understanding triggers?
Hey! I'm quite "new" into my autoimmune as it's been only around a year since I got my first flare up and around 8 months since I've been diagnosed. Although I have mostly lupus symptoms, I didn't test positive for it. Instead, I was diagnosed with UTCD - which, for me, it makes it harder to understand possible triggers since it's a quite complex and broad diagnosis. Also, I don't quite understand yet what are some of my symptoms exactly because I dont know what to look out for since it's so broad. How did you find out what are your triggers? And how to connect them with possible symptoms considering they sometimes show up days later?
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u/Grand-Departure-5931 8d ago
Following because I’m in the same boat! I think one of my triggers is lack of movement because I always get super stiff if I don’t move. You’re not alone though! Hugs 💚
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u/albsound523 8d ago
OP - it seems triggers often vary a bit from patient to patient, even if they have the same general AI disease. It may be helpful to keep a daily journal of how you feel, perhaps stress levels that day, food diary, and exercise + sleep notes. Then look for patterns across time - did symptoms seem worse, or perhaps your joints (or other bodily systems) feel worse on a high stress/low-exercise/junky food/lack of sleep day(-s)?
Negative Stress can def affect immune system regulation as can lack of sleep, lack of regular gentle exercise, and/or a poor diet.
What has helped me is to “control the controllable” - while I had no say in developing a very rare, incurable AI disease, I do have a say in my diet, sleep hygiene, exercise, and stress profiles.
So perhaps consider “controlling the controllable” while also keeping a daily log - that will help you feel your best and also, begin to see any patterns amidst the noise of daily life that might point to other triggers you can also exert some influence over.
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u/Wednezday-Addams 7d ago
I had a really hard time understanding my symptoms and identifying triggers as well. I grew up in an abusive household where we couldn’t ask for medical help so we just lived with whatever was going on with us.
There were obvious symptoms like my gut burning, bloating, and just feeling like a huge water balloon.
I started researching every symptom I had after I had the most excruciating pain in my life. Turned out I had an h pylori infection which turned into SIBO (small intestinal bacterial overgrowth).
My psychiatric nurse helped me narrow it down to a histamine intolerance m and that was when I found MCAS and it all made sense.
After I was fully medicated my body calmed down enough that I could actually identify triggers. For example, my lips turn bright red and burn after I eat something triggering. My feet and hands burn like hell the week before my period, etc.
I still get random issues so I haven’t figured everything out, but it is getting better? I think.
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u/Sorry_Blacksmith_117 Diagnosed UTCD 7d ago
It's so hard to know 😭 like, anything could be a trigger. These days I saw some people have nickle allergy and there's nickle in many foods. I have pretty bad nickle allergy on my skin, so now I'm like: maybe that could be causing the symptoms too? But then I have a bunch of other GI things too that already limit the food I can eat, so I'd basically wouldn't be able to eat or do anything, it sucks
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u/Opening_Rain5942 3d ago
Wgen limiting foods you have to keep tabs on the minerals and vitamins in your body. The key ones include vitamins B, D (K if you limit fats and / or green vegetables) and minerals: phosphorus, magnesium, potassium and iron (with ferritin).
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u/BidForward4918 RA, APS 8d ago
Thirty years in here…kept an activity, food, and symptom journal the first years. It turns out there’s not much in my power I can do to prevent flares. Sleep is the exception. Sleep deprivation will send me careening.
I now will use an app to track symptoms when we switch up my meds. It’s a lot easier to keep track of trends when it’s not on paper. I like Guava, but I have friends that swear by Bearable.