I’ve been waiting to be diagnosed for 16yrs.

Compression calf sleeves like marathon runners wear really help me with my EDS-related dysautonomia and POTS. I also try to stay hydrated, and sports drinks help with that. For medication, Catapres has been a miracle for me, since it increases blood volume and flattens the BP spikes while preventing the BP crashes by taming the overactive sympathetic nervous system that often accompanies Ehlers Danlos syndrome.

@ChronicallyJenni

3 жыл бұрын

Yes i know a lot of people find compressions socks useful hadn't thought about the calf sleeves. With my EDS my leg joints arent a fan of the compressions so thats a great tip thank you. Hydration is definitely key! not heard of that medication definitelt have to look into it thank you x

@Dulcimerist

3 жыл бұрын

@@ChronicallyJenni Catapres is a brand name for Clonidine. (I tend to use the brand name, since its generic name sounds too similar to a different medication.) Catapres is the alpha-2 agonist blood pressure medication that calms the overactive sympathetic nervous system (fight or flight response) that seems to be common in people with EDS. It works on the same system as beta blockers, but instead of beta blocking, it tells the body not to release so much of the chemicals that hit the beta receptors.

Coconut water is great for replacing electrolytes if you sweat excessively like I do xxxxxxxxxxxx

@ChronicallyJenni

3 жыл бұрын

I've been trying to have more coconut water recently too! x

Shower stools are a game changer for sure! I love mine. Showering takes a lot out of me, so I switched to taking them before bedtime, so I can go and lay down after and not feel like I'm losing a chunk of my day just to recover.

@ChronicallyJenni

3 жыл бұрын

I do exactly the same, take one in the morning and I'm wiped out for the day x

Thank you for this. I have my tilt table test next Thursday. It's been quite the journey to get a diagnosis but it's almost here.

@ChronicallyJenni

3 жыл бұрын

No problem Michelle hope you found it useful! I'm sorry it's been a journey but glad you're finally getting the tests you deserve and hopefully they bring some answers and the right treatment. I'm only a message or email away if you need anything, You're not alone! Spoons & Love x

this was really helpful for me! especially Jenny's advice about like, recognizing that diagnosis isn't the end-all be-all but rather the first step.. thank you for putting this together!

@ChronicallyJenni

3 жыл бұрын

So glad this was helpful x

Makes me wonder how I’ll make a living with my fatigue 😔

💙

@ChronicallyJenni

3 жыл бұрын

💙💜