hEDS Flare Ups: Any Triggers?

@hmm thank you these are great suggestions! i also have celiac disease and getting glutened is the WORST it definitely makes everything flare up including EDS!

certain exercises (high impact and jumping especially is really hard on your joints), sometimes eating things w/ too many histamines which is why antihistamines are recommended for EDS, temperature like when it's really cold in the winter effects me a lot, if you have any co-morbidities like GI issues those can also make flare ups worse (i have celiac & if i get glutened it's like added pain on top of the pain i get from celiac 😭), and things like standing or sitting for too long. also there's a few different meds that are supposed to reduce flare ups, and although they aren't the same as pain killers i've definitely noticed a decrease in my flare ups & the frequency (i also pretty much never get migraines again!). i only know about antihistamines & low dose naltrexone, and i'm not sure if there's any others out there, but i take Xyzal/Levocitrizine 5mg and for low dose naltrexone 4.5mg. hope this helps & you can find ways to reduce your pain :)

Hi! I'm 18 too! I have more trouble with EDS when I've been up and moving a lot but also if I sit down for too long 😂 my feet knees and hands swell after I eat something I shouldn't have (food dye and a lot of other stuff like that). I also start reacting (swelling or being in more pain) when it's either too hot or too cold outside. I have found that taking a bath with Epsom salt and lavender feels really nice or taking a hot shower!!

Hi I’m also 18! I get flare ups a lot when it is super cold outside and when I am very stressed. For exercise, I find it helpful to look in the mirror to check form to make sure you aren’t hyperextending.

@gcankrom thank you! i actually have celiac disease so i have been completely gluten free for about 7 years. i appreciate the suggestions and will definitely try them all out! i have definitely found that stress worsens my symptoms too.. and temperature regulation (especially with POTS/Dysautonomia). I recently had a complete dislocation of my knee and i damaged a ligament.. so i haven’t been able to walk on it and it’s definitely affecting my other joints as well. Thanks again for the advice and support!

hi!! i’m 18 as well and struggling with declining joint mobility as well. my physical therapist reminds me to avoid locking my joints to minimize pain. i find my triggers tend to be: temperature, exercise (when not doing it properly or safely), overextending my joints, writing a lot (try to take breaks to avoid stressing finger joints), overdoing it, inflammation, and stress. similarly to the person above, i find that hot epsom salt baths, pilates, swimming, pelvic floor pt, and bracing (paired with strength training to prevent muscle loss) helps my joints a lot. and self care is SO IMPORTANT!! taking breaks and resting prevents overexertion and is good for you mentally as well! there’s so much we can’t control about EDS, and it sucks that it feels like it always gets worse despite everything we do. my wonderful geneticist has done research that says going gluten free helps with EDS inflammation significantly, so if you feel like that’s an option it’s definitely worth trying!!! best of luck to you my friend, stay strong :)

@UnluckyUnicorn Thank you!!❤️

Overextending or doing too much during the day. Certain foods seem to trigger me. When my other conditions flare it then aggravates my hEDS. I would suggest, if you can, going to physical therapy or doing some form of strength training (water resistance like swimming, Pilates designed for EDS) as this conditioning can help stabilise joints. I would talk to your doctor about things you’re concerned about to see if maybe something else is going on too or if they have any suggestions. Foam rolling or massages can be nice. Epsom salt baths help relax when you are really struggling. Self care is important, especially in a flare, even if that means taking a day to watch movies. Wish you the best ❤️