autoinflammatory

I hope everyone is having a low pain weekend! I was able to deep clean closet today with my moms help. I’m very grateful for her, she’s always been by my side. Something about a deep clean always feels like a new start, but when chronically ill it’s basically running a marathon. I wish I could have cleaned more, go to the gym ect. but I’m trapped in my illness I feel like. Does anyone have ideas for hobbies to do at home? 😊 #autoinflammatory #EDS #Fmf

Just testing out how to post! I hope everyone is having a good day. #autoinflammatory #familialmediterrianfever #EDS #autoimmune

#Traps #RareDisorder #autoinflammatory #RareDisease #chronicinflamation

So, I DID end up "pulling up roots" and moving out to Utah from SC to try to feel better. The dry air, cool breezes, and (mostly) cooler temperatures (at 5500 ft elevation) make a big difference - but I still get sick anytime I get too hot, over-exerted, or in an enclosed & dusty environment. I clean cabins at an RV Park so it still happens at least once a week even in winter, when temperatures are in the 30-40's. I really don't "get it" and neither do ANY doctors I've seen. When I'm sick, I still suffer FATIGUE, Low-grade Fever, Joint Pain, Debilitating Head/Neck Aches (headaches on the TOP of my head, and Neckaches on the sides, under my ears); Left ear ache, stuffy nose, dry cough, diarrhea, stomach pain, burning urine, and mouth blisters.... EVERY TIME! These symptoms last for 1-2 days depending on how overheated I got. All lab tests still inconclusive. Maybe Late Lyme Disease?
Even though I still deal with this, in Utah I'm able to get up & outside, do things, enjoy the outdoors & hike. (All things I hadn't been able to do for 4 years in SC.) I've lost 30lbs & 4 sizes, though. Maybe that's helping. #autoimmune #autoinflammatory #mastcell #LymeDisease #Anxiety #anger #Depression