u/pahobee

For me it’s hands down the chronic fatigue and sleep disruption. The sleep apnea/UARS is brutal but even with a BiPAP I wake up multiple times a night and rarely get into the deeper sleep stages or REM. This can be both a cause and consequence of dysautonomia as well. I actually have had very few dislocations/hernias/etc, and the ones I have had occurred during the very brief times in my life where I was actually active enough to do anything to hurt myself… because for most of my adult life I’ve been too fucking tired to do anything. I do have chronic pain in my feet and back but I’d be perfectly happy to deal with the pain if I could just get some fucking sleep.

I have this problem where every time I start to feel better after a long flare, I make a bunch of plans to spend time with all of the friends I neglected while I wasn’t feeling well. Then this inevitably either sends me back into a flare, or I end up super overwhelmed with balancing the life maintenance stuff that got neglected during the flare and also balancing my social calendar. I love my friends and I just want to have a fun summer… does anyone have any tips on learning to manage this better?

I’m allergic to most fragrances (all artificial and some natural), and as such, have to use fragrance-free hair products. Unfortunately, a lot of these products suck ass, only exist in a one-size-fits-all shampoo and conditioner set, and many products like fragrance-free bond repair treatments or hair masks straight up don’t seem to exist. I have straightish, baby-fine hair that is rather thick but unfortunately is also rather fragile. Has anyone here managed to get to their goal length with such pitiful product options? What products do you use?

Don’t you have to fit a criteria to get diagnosed? Like, the doctor that diagnosed me walked the through the criteria and determined that I fit it. How are people out here getting misdiagnosed?

Perhaps that person thinks that once they identify a gene for hEDS, testing will show that most people diagnosed with hEDS don’t actually have it and are “just” hypermobile? I don’t understand.

Is this person just being shitty and gatekeeping or do they know something that we don’t?

This is half just a tantrum/vent but I can’t stand it. I am finally in a place in my life where I have a ton of wonderful friends. I also recently had a bad chronic illness flareup over several months where I had very little energy and could barely see anyone. I’m doing better now but I feel like I’m a bit burnt out from it. I can also feel my friends’ frustration with me and I know the lack of reciprocity makes them less likely to reach out. But even when I’m well I hate reaching out because I always feel like a burden planning things. For a while some of my friends lived very close or in the same building which made the effort to go see them quite minimal, but they’ve moved farther now. And I just can’t keep up with all of my friends like I used to! It’s too exhausting to try and schedule time with everyone when I used to just be able to pop down the hall or the road and visit with them. I need so much recharge time now that I’m working a reception job again. How am I supposed to travel to meet someone at a specified external location at a specified time where I can’t just cancel if I’m feeling depleted because my best friends are no longer next door? The burden of each visit is so much greater. Never mind that I can’t feel how long it’s been between visits. I don’t want them to drift away because I love them all and I feel abandoned and I don’t want them to think I don’t care. But it’s all just so hard.

32F, diagnosed hEDS this year. I've had chronic pain in my lower back since my mid-20s due to the Bertolotti's, but on the opposite side of my pseudojoint. It seems to be like a chronic muscle spasm from overcompensation. I've just started having twinges in my neck this year. I'm worried because the limited range of motion caused my by spinal deformities will inevitably cause extra stress on the surrounding joints, and hypermobility will just compound things. Has anyone else dealt with anything like this? What has helped you manage the pain?

Don’t get me wrong, I think the female body is beautiful. I’m bisexual, for gods sake. My own sketchbook is full of naked ladies. But in these subreddits it’s more common to see an unclothed female subject than a clothed one, and it’s relatively rare to see male subjects in similar states of undress and in such an erotic lens. A lot of the pieces with naked women in them aren’t even interesting or unique. They don’t have a lot to say artistically as pieces either. People just upvote because boobs.

Sexuality is beautiful, bodies are beautiful, and naked bodies aren’t always inherently sexual, but the double standard in the subject matter is just killing me.

Sometimes I can feel this weird click when I move or breathe in, in my back where my bottom right rib is. I have a chronic muscle knot around that area because I have a spinal deformity that causes me to overcompensate on one side, but lately there’s been more of a stabbing, nervy pain underneath where the rib meets the spine. However, usually when I feel the click it doesn’t hurt.

Any thoughts?

I (32F 5’5”) gained 50 lbs and then lost 30 in my 20s, but I have flappy bat wings on my arms and thighs like I’ve lost twice that. I have a friend that gained and lost the same amount as I did but her loose skin is barely there whereas mine is very much there. I was hoping they’d eventually contract but they never did. I only just got diagnosed with EDS so I’m wondering if there’s a connection.

I’m single anyway and I suck at dating (disorganized attachment and severe fear of abandonment) but fuck. I want someone to grow old with and have little ones that are half him and half me and to watch them grow up and explore the world. But I have AuDHD, CPTSD, and hEDS plus comorbidities. I deal with fatigue a lot of the time. I don’t have a college degree. I’m a receptionist making very little money. I struggle to keep my apartment clean. I don’t cook. My parents still have to help me with my medical bills. I keep forgetting to make a dentist appointment and it’s been over a year. I’m paying parking rent on a car. I don’t even drive because selling it is too overwhelming. There is no way I could responsibly bring a child into the world.

I used to hope that maybe I’d eventually grow out of all my dysfunction but I’ve been through a decade of therapy and finally got diagnosed with all this shit (minus the ADHD which was diagnosed when I was a kid) and I’m realizing I’m probably always going to be like this. I’m never going to have the energy and ability of other people and it’s breaking my heart. I never really got to pursue my dreams and now I’m worried that even if I find a great partner, I’ll be a shitty mother like my mother was, because she was overstimulated and overwhelmed and in chronic pain all the time. I don’t want to end up yelling at my kids all the time because I’m stressed out or accidentally neglect them because I can’t keep up with the pressures of life. That’s what happened to my mom.

I don’t know. I’m just sad and feel hopeless.

I feel like I just get so stuck in my routine that unless someone reaches out to make plans with me, I forget that I need to reciprocate in my relationships. I think part of it is social anxiety/RSD because I always feel like I’m bothering them and I worry too much about making sure they have a good time. Oftentimes I also need so much alone time that usually by the time I’ve honored the social commitments other people initiate, I’m tapped out. And I get so lost in my own little world that I forget that the future exists and it doesn’t even occur to me to plan ahead, or I worry that I’ll accidentally overbook myself and burn out. I worry that my friends think I don’t like them and I know it feels shitty to be the only one initiating a hangout, so I want to change.

My last one was lentil soup!!! Nice and healthy!!! But nooo, my stupid brain is like “sorry, the only thing we’ll accept right now is ice cream”. I’m already up a few pounds, I didn’t need this ughhhh

I hope that version of me is happy.

This version of me has three separate psych evals from childhood showing a genius IQ with slow processing speed yet no answers as to why, a GED, a shitty receptionist job, multiple health problems I can’t keep up with, an apartment that looks like a war zone, and a metric fuckton of trauma.

I’ve fought hard to even be able to live independently, like a semblance of a functioning person. And yet I can’t help but pick up and examine the pieces of my life and think that I shouldn’t have had to fight for that at all.

I (31f) was diagnosed with HSD about a year ago. Haven’t been evaluated for hEDS. My aunt is in her 70s and has been diagnosed with lipedema, which I hadn’t heard of before, so I googled it. And for fuck’s sake!!! I realized that I look just like the Stage 1 presentation of it. I’ve always had thick legs and large upper arms even when I was 16 and a size 2. In fact, my legs and arms are kind of the only parts of me that look fat (minus my little tummy pooch). I also learned that apparently the fat in your upper arms and inner thighs isn’t supposed to feel all bumpy like a bean bag, but mine always has, since I was a teenager.

So I started reading up on it, and lo and behold, it’s apparently very comorbid with joint hypermobility, and is even hypothesized to be a connective tissue disorder. GOD DAMMIT.

This brings my full list to:
-ADHD
-autism (I haven’t been diagnosed but I have been heavily peer-reviewed)
-dysautonomia, especially heat intolerance and orthostatic hypotension
-obstructive sleep apnea
-astigmatism/keratoconus
-tension headaches/migraines
-TMJ disorder
-having to pee all the goddamn time
-and now this

I guess it’s better to know now rather than later, but there doesn’t seem to be much you can do about lipedema and apparently later stages can be quite painful. Just kind of a bummer.

Anyone else have this?

Edit: I just found out that EDS causes weak enamel. I’ve had nearly 50 cavities. FUCKS SAKE

This is sort of the only thing that prevents me from being diagnosed with hEDS. Granted, I (31F) wasn’t even doing anything strenuous, I was just stretching my arms like I usually do to pop my shoulders, but that time it felt like it slipped somehow and popped right out and back in again. Hurt like a bitch and it took a few weeks to heal.

I’ve only had one abdominal hernia as well. It was a little one in my groin that I gave myself doing daily yin yoga during the pandemic.

Would I potentially have more injuries if I were more active? I’ve avoided most strenuous or high-impact exercise my whole life because I’ve always gotten so freaking exhausted afterwards and it’s so uncomfortable. I always figured I was just being lazy but now I’m rethinking that.

I was just diagnosed last year and I’m still trying to wrap my head around it and process how much this has affected my life. I would say I experience a lot of discomfort and fatigue but not really like, debilitating pain like so many people seem to experience. I had one friend with EDS once and she had to be in a wheelchair every now and then because her pain was so severe.

Am I just being silly?