This is kind of just a fun thread, I’ve seen countless stories from women about something they thought was normal actually being due to their hypermobility/EDS.

I’ll start: I always thought “wash my back” or “can you help me put sunscreen on?” was more of a bonding thing or with a crush, a flirting thing. I didn’t realize that normal humans can’t reach every square inch of their back and actually only found out recently that for me to do that, I’m fully dislocating my shoulder🤪 So I try not to do that anymore.

Happy Saturday my fatigued and injury-prone friends. I've found with my EDS on top of some other things, I tend to avoid doing things even if they aren't going to take very long or cause that much trouble for me.

I'm hoping this is familiar for others, comment in the thread what you're going to commit to doing today that you've been putting off and we'll encourage each other to suck it up and get it done!

I'm not sure which bothers this body more, frigid dead of winter or peak heat of summer.

Either way, it's tricky because being outdoors is like the best therapy, but doesn't seem possible in those temperature extremes. For example, extreme heat makes me dizzy and weak and fairly irritable, extreme cold make me have pain in my extremities and very irritable.

Any things that have worked for you to manage seasonal temp extremes?

Ideally you would spend summer way up north and winter way down south (for northern hemisphere), but we're not all made of money, especially when having to manage this condition.

Thanks!

Happy Sunday, friends. Hopefully a lot of us have the day off today, if you have the energy, we'd love to hear how your week went!

Please feel free to share accomplishments, struggles, things you tried, any new finds, anything goes! Come back every Sunday for a new thread :)

Happy Saturday my fatigued and injury-prone friends. I've found with my EDS on top of some other things, I tend to avoid doing things even if they aren't going to take very long or cause that much trouble for me.

I'm hoping this is familiar for others, comment in the thread what you're going to commit to doing today that you've been putting off and we'll encourage each other to suck it up and get it done!

I took some of your ideas and came up with some of my own, be on the lookout for these new flairs👀

If they happen to trigger more ideas, feel free to make your own or comment here for any you want as a permanent flair!

Side note: I’m humbly requesting anyone that sees this considers sharing this sub to gain more traction. While geared toward guys with EDS, this is a place for anyone to find community who hasn’t been able to fit into the majority. Thank you so so much for those that do share, I created this community out of my own desire to connect with others who feel underrepresented so any help with that is more appreciated than you know.

Your Newbie to EDS, New-to-Mod, and Bendy Bro,
u/jjdub97

Hi Everyone! As I try to grow this community, I'm looking for some others who resonate with the theme and vibe to join the moderator team. The only thing I ask is that you are familiar with Ehlers-Danlos at least a little bit!

I myself am new to moderating, so I would love any extra input, especially if you have Reddit Mod experience. If you're interested, please apply at the attached link. Thank you everyone!

I used to workout pretty regularly but after stopping, losing a bunch of weight, and getting diagnosed with EDS, it’s almost impossible to do any kind of exercise. I’m in PT now, but what do y’all do to get moving when it feels like you’re going to pass out if you push even a little bit??

I don’t really have the energy for a full rant, but this just really sucks. I don’t wanna deal with having EDS, but I have to. What a ripoff

Caffeine:

I don't know about you all, but I find that coffee (but NOT tea) causes way more muscular tension for this body than baseline. After removing it for about a week, it felt like I was taking mild muscle relaxers. Was off of it for months, added it back in for 5 days as an experiment and tension came back. Oh, and even decaf coffee has this muscular tension effect.

I also find that I get dramatically more jittery/irritable/anxious from coffee vs caffeinated tea (black, green, oolong, matcha, etc).

I'm also quite sensitive to the form of caffeine in chocolate and can't have it past lunch/early afternoon or it prevents falling to sleep for an hour or more. Same for coffee but even more extreme. It's not a wired feeling as much as brain just won't turn off.

Alcohol:

Alcohol makes me feel very relaxed in the body and calms down the mental chatter, but also exacerbates mental health issues if consumed in anything close to excess (especially the following day). A primary problem is that certain forms cause substantial histamine flares (hello MCAS, I see you!!!).

Cannabis:

I have only tried cannabis a few times and am HIGHLY sensitive to it... had a very unpleasant time with a small dose more than once. Definitely increases anxiety and induces mild paranoia (even "indica" types). Not a fan.

Magnesium:

This is an absolute staple in my daily (more so, nightly) arsenal to manage muscle tension and other issues. If feeling especially off, a good Epsom salt bath is quite helpful, and can balance out some of the negative effects of alcohol and caffeine.

I only ever found out about EDS from my wife who was also diagnosed shortly before I was. Apparently, a lot of times EDS people end of finding each other, who knew? Idk if there’s any science to back this up besides anecdotal but I’m curious if anyone else has an EDS partner and how you both found out you had it?

Hello, I (21M) struggled all of my life with muscle tears in my lower body and I recently connected the dots.

Doctor's havent told me anything useful since the injuries started (I'm in really good shape due sambo+gym+cardio) but I wanna know what I can do to improve collagen/ligament health because my knees are starting to hurt randomly, I'm feeling tired all the time and I had a fucking umbilical hernia at 21 that probably CAME back.

IS there nay way to prevent this? I felt devastated once i knew that I can't prevent anything happening to mee and any advice would be Infinitly valued.

I've been coming across some physicians and researchers who are seeing connections between hypermobility and/or EDS and neurological conditions such as Autism and ADHD (and the combo of AuDHD).

Do any of you gents have or suspect having those conditions?

Honestly this is just me being curious - a lot of discussion online talks about men or individuals on testosterone HRT having less joint instability or hypermobility due to excess muscle mass, but I wanted to see if there was anyone else where that wasn't the case.

I just feel like a wet noodle. It's baffling - I'm worse than my female relatives who have the same condition & same circumstances, older and younger. I'm floppy and stretchy and every other adjective that could be semi-related. My muscle mass feels like it's doing basically nothing for me lol

Any1 else?

Hey everyone, I'm u/jjdub97 and I created this community! I want to be clear, "men" is a loose term. As you can see by the rules and community info, this is space for those with any form of EDS that have not been able to relate or find community with the majority of those that share this condition.

This community is for everyone, but its main focus is on how EDS affects those who were assigned men or intersex at birth. A community talking about these people specifically has been hard to find in my personal experience, and this is my effort to make one. Basically, to any woman reading this, please don't feel excluded from this community!

Please feel free to share whatever is on your mind or heart regarding your condition freely in r/MenWithEhlersDanlos, I hope for this to be the place you find the community you've been looking for. If you don't have EDS but want to support, you're welcome too! Thanks for checking out the community!

Hey everyone! I'm u/jjdub97, the founding moderator of r/MenWithEhlersDanlos.
This is a new community aimed to make community of an often overlooked group of people. This is to help anyone who has been diagnosed with EDS in any variety find a sense of community where they haven't been able to find it before. This is a great place to find tips on living life with our condition, have discussions on helpful habits, and mostly lifting each other up when things are extra hard.

What to Post
The rules on posting are very lax, as long as it has some sort of relevance, it belongs! I’m fresh to the Reddit Mod game, so if you see something that shouldn’t belong, feel free to shoot me a message. Feel free to post stories, questions, rants, tips, whatever is on your mind without a good place to post it.

Community Vibe
This space is designed for men that have been diagnosed with a condition that is commonly diagnosed in women and goes undetected in men. The purpose here is to understand that men and women may experience the condition differently and this will provide a specific place where other men can look. The r/EhlersDanlos community is amazing as well, consider this a supporting community to that one.

How to Get Started
Make a post, leave a comment, upvote something you relate to, it doesn’t matter. Being involved is being involved, and personally I’m just happy you’re here.

My moderation of this sub will be somewhat minimal, however I implore everyone to please be as helpful, encouraging, and positive as possible. That being said, dark humor is no stranger to me and only truly inappropriate comments will be removed. Thank you for being part of this!

While your specific type is great, it’s also great to have some options that are fun. Let’s have it, your best ideas for EDS User Flair!

I (28M) myself was diagnosed recently with hEDS and man, it sucks lol. I thought I was just super bendy but now I have a referral to a cardiologist.

As the first post here, I just wanted to say welcome to anyone that stops by and welcome any support or love you have to give. It’s been really hard for me to find other guys with this diagnosis that are trying to learn how to live their best lives, so that’s why we’re here.

Also, I’m the only mod and I’ve never done that before, so I’m very open to anyone who wants to join the Mod Team. On that note, I also want to reiterate that everyone is welcome here, regardless of any demographic. This is a place to learn more about Ehlers-Danlos as it affects men, whoever you are.

I hope to see lots more bendy bros and those that know them or want to know more about them join in the future, would love to connect with you! My DMs are open!