After 10 years, I finally started a lupus diary to keep track of any strange signs & symptoms I’m experiencing. I had a flare up last month with some old recurring symptoms & also some new ones that made me a bit nervous. I should have done this a LONG time ago. Once everything was written down on paper, I realized that there were many signs & symptoms present leading up to the flare up that I never thought to attribute to the lupus.
The first signs of my most recent flare up presented themselves up to two weeks before the actual flare. The most notable early symptoms included stomach pain every evening immediately after eating & sore tongue that lasted for days. Then I started to feel sore clusters of bumps forming inside my mouth (almost like when you’re starting to get a pimple), which eventually would rupture & turn into canker sores… a painful cluster of them. Then I would one day come home from work & remove my shoe to find tender spots on my toes where there were lesions forming. The canker sores & toe lesions have always been present with every flare in the past, so I am usually not aware of any lupus activity until this occurs. As the lesions & sores become more irritating, I usually notice my energy levels plummeting & the malar rash across my face become more prominent. The rash never bothered me, I just don’t need to wear blush! But the fatigue… ooooh the crappy fatigue that just hovered over me for two weeks! Physically I can handle the fatigue, but it causes mental exhaustion because I’m not a person who can ever sit still to do nothing & just rest. So when all my huge plans to get a ton of things done each day go to shit because I couldn’t get out of bed early enough, I get grumpy & stressed. The stress in turn feeds the illness & it becomes a vicious cycle. I always have to put my foot down at some point & tell myself to either agree give the body the rest it needs or just get my ass up and do what needs to be done. During ironman training, i chose to do the latter.
There was one symptom that was very new & a bit worrisome this time. I had developed a rash on both my underarms. Some days it was red, tender, raised type of rash. Others I would wake up to find a rash that looked more like bruising under the skin; little red/purple dots. In school they always taught us that purpura could be an indication of serious underlying conditions, so I got worried (though not worried enough to see my physician lol). I was using an all natural deodorant from Haiti which is awesome by the way, but I stopped in order to eliminate it as a possible culprit. The rashes still came & went for about 4 weeks. Crazy. No idea why it started & why one day it just decided to stop. I don’t think it was the deodorant bc it continued for a month after I stopped using it. In the meantime I had been using coconut oil topically instead & it works fabulously for regular work days. So if you’re looking for an aluminum-free deodorant solution, it might be sitting somewhere in your kitchen! It works just fine for a normal day, but of course it isn’t going to hold up for a 4 hr bike ride.
I was thinking today that maybe my lupus had remained so well controlled when I was constantly training & working out outdoors several times a week. Being outdoors means more sun exposure, hence increased Vitamin D production by the body. I recently read an abstract from a scientific journal that claims that they found a link between Vitamin D deficiency & cancer/autoimmune disease. I’m dying to read this article, but the only full text I’ve had access to is in Polish! 😦 I need a translator. The good news is I do have other info about Vitamin D deficiency at my fingertips. I attended an Anti-Aging Medicine medical conference in Vegas a couple years ago & there were many lectures about treating many health conditions such as cancer & asthma by treating the underlying cause – Vitamin D deficiency. Maybe all this resting post-IMTX has caused a drop of Vitamin D levels, allowing my lupus to act up & linger. I know I could go get my levels tested, but don’t care to make the effort to go right now. Maybe later. The conclusion for now, it’s time to start taking my vitamin supplements again & get back outdoors & back to my old self.
If you’re interested in the article, here’s the link:
Full Text Article (Polish)