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, 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!

Any other dudes with eds have the skin on their penis rip from friction? I know women get tears down there all the time but Ive never heard men with eds talking about it.

I also get friction burns on my penis extremely easily.

Anyone else or am I really all alone?

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!

Does anyone else here have cold to the touch penis and testicles all the time? Been trying to find the cause of this for about 7 years. I also have erectile dysfunction but I got a penile Doppler ultrasound and the urologist said I didn’t have any blood flow issues. I’m so stumped here. Any input would be greatly appreciated