Hi Everyone! I’m not a mobility aid user, but I’m curious about everyone’s experience/stories, from whoever is willing to share. Like, Why did you start considering them, how did you approach the topic with a doctor, etc. Anything y’all are willing to share is appreciated, thank you!
Hey all, hEDS here! I need tips on how to sleep without curling all my limbs! haha I try to fall asleep on my back with my limbs straight, but I always end up in the fetal position with my arms bent under myself, shoulders curled in, head tucked, and knees bent. My muscles are so sore and tense from the heat and picking up being active again. Any tips?
So, i hated my bed. it was a traditional coil mattress with a thick pillowtop. I was still feeling a lot pressure points and issues. i decided enough was enough and would get a new bed. I know temperpedic is the best for this, but i do not have the money for that. so i started to look for altneratives that would give the same effect/quality.
i found three mattresses that i was seriously considering: casper, purple and leesa. all are about the same price(though as you will see below, i went with a more expensive casper so it is not the same price as others. ~1000 for a queen or less. Casper also just came out with a softer version of their mattress, which is what i ended up going with.
However before that, i was going to get the leesa. it helps to fix pressure points, it is memory foam but has a lot of ventilation within the mattress to ensure you don't overheat at night, and helps to ensure your muscles can relax. Purple is also highly recommended, but their top layer didn;t look right to me. It seemed like it would not be as comfortable as others, and given i can(any likely you), can get imprints of patterns i am sitting on, it didnt seem like a good idea to get a gridded bed. i ended up going with the more expensive casper because it was meant to help with back issues and ensure there are no pressure points. Also has the same ventaliation. i was most scared because all of these mattress are in the middle of firmness. i don't know about you but i need something softer. This casper does that.
I don't know if this will help, but when i tried to google, mattress for EDS, nothing came up.
Does anybody have any tips for dealing with the heat, specifically with muscle fatigue?
For context, I was doing a lot of walking, and was just miserable, and moving my legs felt like I was moving through quick sand. I think the heat made it worse. I was diagnosed pretty recently, so I’m still figuring out how this has affected my body. Any tips would be appreciated! Thank you so much!
(Side note, I had my knees taped while walking, which helped with other aspects a bit :D)
Hello,
I am diagnosed with POTS, hEDS, and MCAS. I also just found out I am 7 weeks pregnant with my first child.
Not looking for medical advice of course but just advice from people who understand my special body.
Anything you noticed that pregnancy did to you that you didn’t expect? Anything I should keep an eye out for?
Give me the fun and scary things!
My favorite thing so far is despite going off my POTS meds, I am barely getting dizzy! I’m sure it’s because of the increased blood volume but I didn’t think it would kick in so fast. Fingers crossed it sticks around 😀
My nasal tip, specially the cartilage is completely collapsed and not formed or fused together - somewhat of a bifid nasal tip. I also have a deviated septum with half of nose completely collapsed, visibly too, and I can barely breathe through my nose. I want to get a nose job, I’ve heard of PRP or something like that but, is this possible with EDS? Anyone with any experience? I’ve had a surgery before and it didn’t heal properly, mind you it was a mole on the centre of my back between my shoulder blades so probably wasn’t the best spot to begin with. I also have been working on naturally expanding my palette, but post nose job I worry about how that might be affected.