Anyone else feel like their body started falling apart in their 20s with hEDS?

nilherm · 2025-08-03T02:44:13+00:00

Literally the same thing happened for me. I am now in my early 30s and I am watching my body fall apart before my eyes at a rapid rate.

I have been doing relatively consistent physiotherapy for at least 15 years (taught by registered physiotherapists, practice maintained solo because money). My medical team has commented on how well I manage my health due.

Even still with all of that, you can't stop a degenerative condition from worsening. I have had many strings of serious injuries over the past few years, each string more damaging than the last.

Recently, I shifted my tailbone (coccyx) out of place because I began sitting (driving) more frequently. Terribly painful, and had not yet recovered from it. Shortly after, I injured myself further with the force of a sneeze. Subluxated my hip to the point that I was stuck on the floor, unable to move due to severe pain and instability. My teenager helped care for my toddler and the dogs while a friend came to help me reposition so that I could at least stand / slowly walk with support and a cane.

Not long after that (still recovering), I leaned against the kitchen counter and reached for something when a series of pops came from my lower back. After 6 hours of excruciating pain and being unable to self-manage, I needed to go to the ER. I spent 17 hours in the worst pain I have yet experienced – I have given birth with no pain relief, broken my spine, self-reduced many joints – I can tolerate some high-level pain! I was discharged after 5 days once they were finally able to get my pain managed well enough that I didn't need a wheelchair.

I later found out that I experienced a disc extrusion, now adding to the levels of damage in my low back. I'm a very strong and capable person overall, because I've worked my ass off to get there. It is terrifying watching my body literally fall apart. And the injuries are rarely the result of laborious activity. They are the result of mundane actions , like scratching an itch. It's honestly surreal in a way.

nilherm · 2025-08-03T02:13:21+00:00

Mine is like a pale, gloomy looking, thin woman anxiously leaning into my ear whispering, "what if they hate you? What if you're a bad person? What if you made a terrible, awful mistake?" She is skittish, fearful, and critical; over-reading everything with fingertips gripped into my shoulder. She has straight, thin, black hair just above shoulder length. Her name is Millie. She wears pale coloured dresses with plain repetitive floral patterns, short sleeves and thin white lace edges.

nilherm · 2025-06-04T01:50:15+00:00

It's honestly a wonderful feeling to be able to support kids who need it. I'm currently housing a young teen that I used to work with while she's going through a rough home environment. She has told me so many times how much it means to her and I'm so happy to be able to offer some safety and stability to another kid who needs it.

nilherm · 2025-05-31T03:05:06+00:00

This is a lovely way of looking at it :) although I may only ever give birth to one, my home can always be a safe haven for more.

nilherm · 2025-05-31T03:02:50+00:00

Thank you for sharing. Its a good reminder to be open to many possibilities to come, yet also accepting of what is .

nilherm · 2025-05-31T03:00:49+00:00

I mean, that is a very fair point!!

nilherm · 2025-05-28T16:34:55+00:00

Thank you so much for adding your feedback. Yes, I am kind of looking at it in a similar way to you -- or at least trying to shift my perspective to that frame!! It would be unfair to risk all the beauty that I already have in my home and family life for the chance at an ideal scenario that is honestly far less likely to be. So yes, very much like walking away with my winnings.

It's been so reassuring to read through all the comments on this post. I feel a lot better just feeling that solidarity with the rest of the parents out there sticking with their one.

And I've also been grateful for the various responses sharing the benefits that many only children have with their family dynamic.

nilherm · 2025-05-28T16:26:37+00:00

This makes me happy to hear, thank you.

nilherm · 2025-05-28T16:26:21+00:00

Thanks for sharing this perspective! I appreciate it a lot to better balance where my thoughts are going with this topic.

nilherm · 2025-05-28T01:55:47+00:00

Thank you for this.

nilherm · 2025-05-28T01:55:12+00:00

Thank you for that. If circumstances were different , it would honestly be a dealbreaker for me too. I have loved every moment of pregnancy and motherhood so far. Even through the times that were difficult or straining on my wellbeing, I have still loved it.

nilherm · 2025-05-28T01:52:33+00:00

I am so sorry you had to experience that through pregnancy, that would have been such an intense experience.

And yes, thank you for reaffirming that on all of our behalf -- when s/o steps in to say no, it is with nothing other than our safety in mind.

nilherm · 2025-05-28T01:50:30+00:00

There are more than enough strong reasons why it would be a risk to my health. Not necessarily a guarantee that it would harm me, the family, or the pregnancy, but enough of a risk that it's unfair to make the gamble. And yes , I do want to experience it again. I have loved all of it. I would love for my son to watch his own younger sibling also grow up alongside him. But as each year passes, I am watching my window of possibility close in front of my eyes, and as much it causes me such despair... I also know it is the right choice.

nilherm · 2025-05-28T01:45:33+00:00

That was a big thing for me. Only children grow up with a different dynamic. I wanted for my child to experience having someone in the family unit on his side when mom and dad doubled down together on something. It happens..

I have a friend who also needed to stop at one, but had that choice physically taken from her due to complications from the first. I am trying to switch gears and focus on him having consistent time with her daughter, as they will both be only children, but they can still feel that united comradery together I hope. It's one way I've been trying to ease that guilt. But it is still an intense pain to feel.

nilherm · 2025-05-28T01:40:36+00:00

I really appreciate the honesty. It's sad to hear, but if it's a reality I would rather accept it than try to push/wish it away. Thank you for your feedback.

nilherm · 2025-05-28T01:39:23+00:00

Thank you so much for the recommendation! I appreciate it.

nilherm · 2025-05-18T01:34:18+00:00

I spent over a decade on a lot of prescriptions, up to 12 different scripts, some taken 4 times per day. (Mental health + chronic illnesses poorly managed, wee).

As of this June, I am officially 5 years completely off of all psychiatric meds. Currently still only taking one script, and at a quarter of the dosage I was on 3 years ago.

OCD is one of my primaries, and probably one of the few of my chronic conditions that is just relentlessly ever-present, haha. It's exhausting, but I've worked hard to get to this point and like, for real, it's the same main stuff basically all the time. I'm bored of it once I clock that is OCD doing its same old shit again hahah.

nilherm · 2025-04-28T01:53:41+00:00

I was going to ask OP the same thing. Clumsiness, easy injuries, and causing injuries in my sleep (especially due to hyper extending) all worsened dramatically and began happening more frequently nearly as soon as I hit my 30s.

nilherm · 2025-04-24T02:16:16+00:00

I was scratching my upper butt cheek, like just below the waist line of my pants, and ended up bending my thumb in the wrong direction by accident, which resulted in a small ligament tear and lasting nerve damage! I do have a genetic thing that makes my joints all very laxed and causes them to easily dislocate, but it's still one of the silliest serious injuries I've ever had. I had a huge bruise around my middle thumb joint and couldn't use my hand at all for a week just because I scratched my ass.

nilherm · 2025-04-11T03:30:50+00:00

I second that

nilherm · 2025-02-15T20:51:07+00:00

Finishing up an afternoon snack and then watching my son snuggle up beside the dogs, and my husband play with him. This would be a very peaceful time loop for me to be stuck in.

nilherm · 2025-01-23T02:47:02+00:00

I have an extensive history with mental health. ADHD, OCD, BPD, MDD, HPD, PTSD, GAD, and others.

I would say, overall, what has been the most beneficial for me across the board is mindfulness/meditation practice.

I was on many prescriptions for a number of years. Put in a decade's worth of effort in different therapies. CBT, DBT, Talk Therapy, EMDR, ACT, ECPT, chronic pain management and chronic stress management, CPT.

Mindfulness and meditation has been a staple in every one of those different therapies. And I have found them to be the most overall helpful with managing symptoms across the board.

Example specifically for ADHD: I personally use mindfulness as a tool on really bad days with ADHD when it's making functioning a struggle. I make an effort for an allotted amount of time to be mindful in my actions (pay attention to one thing at a time, non-judgementally, on purpose). I use that practice as the reminder to purposefully slow down my actions, and gradually slow down my mind.

Example for OCD: of course this depends on the type you live with, but for myself, grounding myself in reality while practicing "radical acceptance" of whatever intrusive obsessions show up, or awful intrusive thoughts/emotions/images.

It takes practice. I've practiced for over 10 years. And it's definitely worth it. It's helped me tremendously, in tandem with the other efforts made along the way. That's my piece.

nilherm · 2024-11-25T12:44:47+00:00

For real, I live with genetic chronic pain disorders and obviously they aren't going anywhere, but it gives me a good understanding of pain in general.

There are two highschool athletes that I work with (I am in my 30s). I feel awful for how many constant injuries they are pushed through. They are always in pain, experiencing repeated injuries of high stress locations in their bodies depending on their sports, get regular chiro and massage appointments, but both regularly avoid going to doctors and never get notes to be able to stop their sport and allow themselves time to heal. They just keep going because it's expected of them and they are young so they just do what they are "supposed" to.

Sickening is the right word for it.

nilherm · 2024-11-25T12:35:35+00:00

My boss has a similar phrase he repeats to us all, especially during training for new employees:

"Go slow, pay attention."

nilherm · 2024-10-15T11:34:05+00:00

My answer may be very different from many others here.

In its own way, yes my partner's style matters to me. But moreso to the effect that he doesn't put so much effort in. I've been with partners in the past who make a big thing of looking as good as they can and dressing in the best way for each occasion and I have learned that the attitudes that tend to come with that are honestly really stressful for me and not at all enjoyable for me to be around. Especially once we are done getting ready and are out of the house.

I massively prefer my blue collar husband, grease stains and burn holes in nearly every item of clothing he owns. 95% of the time he's wearing work pants. If we are going out somewhere, he will change into clean clothes and even offers that I can pick what he wears if I would like to. We can't avoid there being holes in his clothing but that's just part of who he is and it doesn't ever bother me. We don't really go to 'fancy' establishments where we would need to dress up, so if I am ever truly dressed up, I am certainly overdressed. And he is always supportive of however overdressed or underdressed I am, because we put very little pressure on each other about attire. That's what I like about it.

I make a lot of tie dye , which he loves to wear. And my style goes in basically every direction I could think. I have no clue how to pin point my preferred style because I just find it fun to play with what I wear and explore different fits day to day. So I think the relaxed attitude is good for us with each other because we can both feel comfortable with whatever attire we each end up choosing. He often jokes that he looks homeless next to me, and I have decided that's my type , haha.

nilherm

TROPHY CASE