ehlers danlos
recently figured out I have hypermobile ehlers danlos and it causes me quite a bit of pain and its very tiring :(
Sorry to hear this @tasiaah
I also have the same condition so I can understand. Are you getting any support from your doctor?
@SilentSerenityy to an extent yes, we're still working on things to figure out ways to help. Have another doctors appointment soon and many other future ones we've talked about to check out more things so hopefully all goes well
im very sorry you have to deal with it as well its not very lovely:( hope all is well for you <3
Unfortunately I just found out the same thing, my joints are popping out while trying to cross the street, while asleep, whenever they decide to basically. I also have fibromyalgia and Tardive Dyskinesia, and a few other pain problems so I'm thrilled about this new exciting news.
Actually I'm freaking out
@K87 I'm sorry to hear you've also been diagnosed with EDS recently, it can be a big thing to find out but it's reassuring to understand your body and what's going wrong. I hope you have supportive doctors who can help you when you need medical support. <3
@SilentSerenityy
To be honest, I have no doctor for it. I have several specialists, but I don't have any that treat ehler's Danlos specifically. The doctor that diagnosed me is not seeing patients anymore because of long covid and the hypermobility is getting soo much worse. I keep falling while I'm out and the other day I managed to hit my head on both a pole and a tree. A doctor happened to be walking by the second time and checked me out to make sure I didn't have a concussion. Each fall is worse than the last, and I'm getting truly worried about walking around whether alone or with someone, I fall either way. I've almost been ran over twice, but thankfully a cop saw me fall both times and saved me just in time. My chiropractor is worried about how bad it's getting, but he's the closest doctor I have to one that would treat it. I don't even know what specialist I need. The one who diagnosed me basically said nothing really helps (she was at John's Hopkins) and I don't know what to do anymore, it's dangerous for me to walk around, I'm scared
@K87. That does sound scary. I don’t have EDS but I have ME/CFS and I use a mobility scooter most of the time. I wouldn’t be able to get out much without them. Does a scooter sound like something that might be helpful for you?
@K87 i totally get the joint part it sucks big time, ive woken up having to relocate my wrists multiple times and my hips especially pop out a bunch when im on stairs, braces are a good idea to try and keep them in place, or KT tape as well. I'm so sorry you have to deal with that tho:( it really sucks, im glad you could find a diagnosis tho. its always nice to know you aren't making it up or something (at least for me personally, I worry im overreacting it or "faking it for attention" like no i don't even want attention what am i talking about), and the diagnosis process can be difficult
I wish you the best of luck with everything and I hope you find things that help you <3
@tasiaah
Thank u, I am going to need all the luck possible. I've almost been ran over twice! It's ridiculous, I just suddenly had to deal with this out of nowhere, plus I have fibromyalgia. I have heard of the tape u mentioned before, but know nothing about it... What does it do?
@tasiaah, I also have hEDS. I can understand the struggle. With there not being a cure it makes life difficult.
@wonderfulRainbow817 yeah it sucks:( I was supposed to see a specialist in the next few years but theres only 2 in Canada and neither of then are taking referrals right now so I was taken off the list which sucks. I do recommend CBD cream for joints if you haven't tried that already! works decently for me, at least minimizes the pain to an extent
