Camille (they/them)@disability folks with Ehlers-Danlos Syndrome do you find ice helpful for treating subluxation pain? I usually don’t use ice but don’t know what to do for a particularly bad shoulder subluxation that happened yesterday
Semi Sentient AI Cooling Water@camille @disability I've found the combination of hot & cold to be most helpful. A really hot sauna if you can (or hot bath/shower. Followed by a cold shower. A hot water bottle or pressing up against a heater works too. Not only does the heat reduce the inflammation but it scrambles the pain signals. Hope you've healed now though.
@sentient_water Thanks for the tip! I’ll try out alternating. I’ve been going based on some advice I got ages ago: ice for the first 48 hours after an injury, then heat after, but I’ve been meaning to research if that advice holds up when chronic illness is in the mix. And unfortunately, I’m still trying to heal from this one. It’s been a rough subluxation. Especially for one that happened while I was just trying to nap 😭
@camille You're welcome. I've been there so many times. Bear in mind I don't follow my own advice most of the time 😃. But when it has been severe a sauna has been one of the best treatments.
Those persistent injuries are terrible because they mentally exhaust as well as physically.
& Yes sometimes those injuries done during sleep can be the worst.
I'm still trying to get a DX but am being gaslit by doctors. On the plus side I'm going to be working with a geneticist, autist & EDS sufferer on creating a specialist clinic as EDS is so profoundly misunderstood.
@sentient_water Good luck with trying to get a diagnosis! I’m sorry you’ve been dealing with medical gaslighting. It’s such a prominent story in our community, and I hate that it’s that way
The clinic work you’re doing sounds incredible!
@camille The thing is it's not even for me any longer. I'm as certain about my EDS self dx as I was with my autism one (about 95% no half decent scientist is 100% certain). I manage my condition well enough. It's for people everywhere who are inexplicably suffering & can't find answers.
The clinic is very early days but apparently we have a young & influential politician on board who has EDS. I really think we should be doing EDS assessments if an autism dx is confirmed & vice versa.
It's still classed as a rare disease. Then again autism was considered rare until it wasn't anymore.