I have so many conditions and I want to make sure I am experiencing hEDS pain so I can treat it properly. What does your hEDS pain feel like? Is it deep, constant, sharp, achey? In one area or all over? Does it seem to be worse in cold or hot weather or if you do certain activities? Any clicking or popping joints or really distinct sensations that are like “oh yeah, that’s my hEDS”?
Ehlers-Danlos Syndrome (EDS)
Definitely clicking and popping joints for me. I get sharp pain when I sublux a joint. Otherwise constant aches. I get deep pain in specific areas after certain activities or using certain joints/muscles. Pain sharpens or deepens when I overextend but not necessarily sublux. I tend to feel more sick in hot weather because of my POTS but my hands and feet are worse in cold because of Raynaud’s. Just feeling the looseness of my joints and them moving/overextending, I’m like “ah yes my hEDS is shining”
Sharp pain when my joints move to far out of place and I’m ALWAYS achey
Every time I move my joints are popping. I have a wrist that locks up and becomes painful if I dont pop it manually. Standing up can sometimes cause deep hip pain on one side that almost makes me fall. Very mild things from bumping into something or even putting my fingers on my thumb can cause something to move and its harsh icy type of pain until I move it back. My joints get worse in the cold due to poor circulation since less blood is in my limbs. When I use the stairs my legs feel like two toothpicks on top the other balancing on tiny rocks. So weak and barely stable. I have mild daily chronic pain and huge flares that affect me all over with severe pain. And joints get achey when overused sometimes all over.
All of the above? Sharp pain with subluxations, any time I get any kind of “normal person” illness, and around my period. Perpetually achy. I have endometriosis and a mitochondrial disease as well and both cause a lot of pain, so I understand the struggle to parse it all out. My mito pain usually burning, endo stabbing, tearing and cramping, eds sharp or achy. A whole cocktail of pain haha
My hEDS likes to spice things up with a little bit of (everything?) sharp, dull, achey, prickley, tingley, sore, stabbing, ect. Its always a surprise what I end up with and its usually a bit of a few different types. Good luck, EDS can feel very random sometimes.
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