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The original was posted on /r/ehlersdanlos by /u/Hels_helper on 2023-10-03 01:28:32.

I have pots and eds… so I’m used to doctors saying “I dont’ know what’s wrong”… but this one issue is really frustrating.

I broke my arm in 2019, my left forearm was snapped in half. I had to have plates and screws on both the ulna and the radius. my bones were super slow to heal, and the surgeon said he didn’t know why it took so long to heal.

shortly after getting my cast on, hard solid painful lumps would form over the ends of the plates… then go away after a few days or weeks… At first i just assumed it was part of the healing process… but it kept happening. At one point i was in so much pain, and when my PCP saw the lumps she sent me straight to the er for x-rays, she was sure that the screws were coming lose… nope, they are right where they should be. ER said I needed to see the surgeon that put them in, cuz they had no idea what was going on and hand only seen that type of reaction when a screw came lose.

Saw the surgeon, he took his own xrays, confirmed everything was in place… and said “well I’ve never really seen this happen before, but with how long it took your bones to heal, and all the nerve damage and scar tissue… i don’t recommend removing them, we are likely to cause more problems if we open you back up.”

So i left, in pain, no help, no idea… at least its not constant, I can go months before it swells back up… and some times its just for a few days… other times it’s for weeks.

When i say it hurts… IT HURTS… like in my bones, white hot, pain that sends shocks from my elbow to my wrist. I can barely move my arm or my hand, all the veins in that arm and hand are like sticking out, my hand is read, you can see the pulse on my wrist. It hurts more than when I broke it.

I’m just trying to figure out if this is something that happens to EDS or POTs? The “experts” are clueless… so I have no clue who else to see or go to for help.