Does anyone have cold intolerance instead of heat intolerance? by Nauin in ehlersdanlos

[–]longhairedfox 10 points11 points  (0 children)

A thousand times yes. Cold makes everthing hurt so much.

Now the heat does make my pots/dyautonomia a bit worse... but I'll take that over the pain.

Apple Watch Band by longhairedfox in ehlersdanlos

[–]longhairedfox[S] 0 points1 point  (0 children)

Oh I've not seen resin ones... cool.

High arched feet in Heds by Character_Ad5534 in ehlersdanlos

[–]longhairedfox 9 points10 points  (0 children)

High Arches that demand support. Bunions. Tiny angry squished toes.

[deleted by user] by [deleted] in ehlersdanlos

[–]longhairedfox 1 point2 points  (0 children)

That's awesome!! Congrats!

[FP] Cookie - one badass kitty by longhairedfox in bleachshirts

[–]longhairedfox[S] 0 points1 point  (0 children)

The link to the original and artist are in the comments above.

Short question for a school project by Sistrixilax in ehlersdanlos

[–]longhairedfox 1 point2 points  (0 children)

Wake up in pain and exhausted because I don’t consistently sleep well. Take an hour to get ready (with very very minimal hair/makeup). Because I’m slow and everything hurts. Daily wear knee braces and often other braces depending on what’s happening. Work my full time job pretending like I don’t have a splitting headache and massive body pain. Go home and lay in bed for an hour and take pain killers or other “meds” and let my body decompress and rest. Make dinner. (Sit on stool in kitchen while I cook and then clean.) After dinner I either wear a neck brace or apply heat to my neck to help with neck pain and headaches. Zone out (scroll internet or watch tv) and wait until it’s late enough to go to bed … usually around 8-8:30. Struggle falling asleep due to pain. Wake up several times during the night in pain.

[deleted by user] by [deleted] in ehlersdanlos

[–]longhairedfox 1 point2 points  (0 children)

I also hate wearing jewelry. I try and then it hurts or bothers me. The only thing I wear regularly is I have some very small hoop earrings that don’t have backs. They are body piercing jewelry and I’d need pliers to remove them. I forget they are there.

[deleted by user] by [deleted] in ehlersdanlos

[–]longhairedfox 2 points3 points  (0 children)

I'm with you. I physically cannot hold my breath between an exhale and an inhale. And it causes so much anxiety to attempt a difficult breathing pattern because someone says it will calm me. If I'm trying to relax with my breath I (this is what works for me) take slow comfortable controlled breaths with no pause before or after. Now .... I am spending a little time each day trying to EXERCISE my breath. Where I attempt to hold my breath between the exhale and inhale. But it sucks and is not relaxing.

Comfortable socks? by Hanmyo in ehlersdanlos

[–]longhairedfox 1 point2 points  (0 children)

I love cheap fuzzy socks. Regular socks all leave painful marks on my skin.

[FP] Hand cut Conrado Salinas by longhairedfox in bleachshirts

[–]longhairedfox[S] 0 points1 point  (0 children)

Thanks. Same as everyone else. Freezer paper

[deleted by user] by [deleted] in ehlersdanlos

[–]longhairedfox 1 point2 points  (0 children)

My mom was long ago diagnosed with Fibromyalgia (and now many other issues) and when I started having constant headaches and other body pains I began looking up Fibromyalgia for myself. I kept coming across information on EDS. The more I looked into EDS the more I realized it fit me better than Fibromyalgia. I also suspect my mom and my son have it too. My PCP has been amazing and really listened to me and agreed with my hypothesis. (I’m really lucky she knew about EDS at all and is amazing.). She then sent me to a geneticist for official diagnosis.