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ehlers danlos

tasiaah December 1st, 2022

recently figured out I have hypermobile ehlers danlos and it causes me quite a bit of pain and its very tiring :(

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Optimisticempath December 2nd, 2022

@tasiaah sorry to hear about your pain :( hope you can find something helpful in alleviating it , even if temporarily

1 reply
tasiaah OP February 23rd, 2023

@Optimisticempath thank you<3 we're finding things and figuring out ways to help limit flare ups

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SilentSerenityy December 24th, 2022

Sorry to hear this @tasiaah

I also have the same condition so I can understand. Are you getting any support from your doctor?

1 reply
tasiaah OP February 23rd, 2023

@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

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K87 February 28th, 2023

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

2 replies
SilentSerenityy March 1st, 2023

@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

2 replies
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tasiaah OP March 6th, 2023

@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

1 reply
K87 March 12th, 2023

@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?

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wonderfulRainbow817 March 3rd, 2023

@tasiaah, I also have hEDS. I can understand the struggle. With there not being a cure it makes life difficult.

1 reply
tasiaah OP March 6th, 2023

@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

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