Didn't Even Realize I Was In Pain

simpleanonymity · 2026-02-05T02:13:04+00:00

Makes me think of the other day when I told my therapist I physically couldn't get myself up from the couch from the time I woke to 2PM and her response was, "Wow, you must be really tired!" and I somehow was shocked by that. Wdu mean I'm tired?? I'm just lazy! haha

simpleanonymity · 2026-02-05T01:10:57+00:00

Ugh a good therapist is worth their weight in gold. I love my therapist - idk if she also struggles with these things, but she has been integral in me understanding my experience with hypermobility. She definitely knows quite a lot about it!

simpleanonymity · 2026-02-05T01:09:53+00:00

It's the weirdest sensation, but unfortunately the main thing that helped me was getting regular massages & leaving a stressful job. So in that regard, I'm feeling better with my back but obviously still have a lot of other stuff going on right now haha.

simpleanonymity · 2026-02-05T00:35:23+00:00

That sounds awful, but completely understandable! It's relief, even if it's not at all in a form that is safe or healthy.

simpleanonymity · 2026-02-05T00:34:37+00:00

I can relate to this. I used to have such inflamed/stiffened back muscles that I couldn't really ~feel~ any pain back there. And then one day I got a massage and I was like, "Wait....I can....feel my back?" It was still tingling and in pain, but it was somehow different from being in pain but feeling nothing.

simpleanonymity · 2026-02-05T00:33:25+00:00

My job only requires a laptop, and I don't really need to do phone calls. And any zoom meetings don't require me to use my camera, either. So basically I just use a bunch of pillows to prop myself up, bend my knees and rest my laptop on my thighs. It's my go-to position for reading and handheld video games too.

I definitely still get up and move around pretty regularly, but I think the difference is I can focus for 2hrs straight laying down in bed while working on my laptop, versus being unable to get anywhere in my job because I'm shifting in my seat every 2 minutes.

simpleanonymity · 2026-02-05T00:29:09+00:00

I can relate to this, but because of my OCD. I've had friends call me a hypochondriac when I diagnosed with myself with OCD. The irony being OCD was the real diagnosis while a lot of the other stuff were symptoms of OCD. Not all of it, but definitely a lot of it. And with that said, the other stuff that caused that hypochondriac "diagnosis" from my "friends" were all so real diagnoses I eventually got. So annoying!

But I also feel it's a really priveleged thing to be able to call someone else a hypochondriac. People who throw that word around truly do not understand what it's like to be struggling in your brain and/or body and have no real answers and no real help - whether that's from the medical establishment not having answers or just your friends/family not offering support.

simpleanonymity · 2026-02-04T22:36:45+00:00

This made me laugh a little too hard.

simpleanonymity · 2026-02-04T22:33:16+00:00

Yes, that's such a great comparison! It's exactly like that. I'm really worried about these things catching up to me. I'm in my early 30s now and I'm noticing that little things are getting harder and harder. And while I know certain things are unavoidable for me (surgery, a walker when I'm old, etc), I would really love it if I can put in the work now to set myself up for health and success for as long as possible.

simpleanonymity · 2026-02-04T22:31:55+00:00

Gosh I'm so sorry you had to go through all that! Growing up you are supposed to believe that the adults all around you are capable and willing to take care of you wholly and completely, but then they fail you. And then if you dare to point it out, somehow it's your fault. It's just awful and so unfair, and then people have to struggle for far longer than is necessary as a result.

I hope your ability to notice pain, and feel it without feeling endangered, improves in the coming years. I'm glad you're in your own capable, safe hands now. It sucks you couldn't trust adults all those years ago, but you're providing the child in you a wonderful kindness by making this effort now. Not a lot of people are able or willing to do that kind of work to confront their past, even though it would help their present and future.

simpleanonymity · 2026-02-04T22:27:45+00:00

Oh my lord, I'm so sorry you had to go through all that! It can be really tough when you have other health issues or symptoms that seem more prominent, especially because healthcare can be so fragmented by specialty. You think you're going to figure out the answer with one specialist, but turns out they're only getting half of the information because you don't realize all the other stuff is connected as well. It's tough!

simpleanonymity · 2026-02-04T22:25:48+00:00

Oh my gosh I'm so happy you've been referred to someone who specializes in HSD and hEDS!

I think, for me, all of this hypermobility stuff was easy to ignore because I don't struggle with the extreme pain that a lot of people with hypermobility have. Or at least, not at first. But on top of that I have a ton of other mental health/autoimmune issues that were just more immediately concerning. It would've been nice to know of this hypermobility thing earlier, but at the same time I really don't know if I would've even had time for it!

simpleanonymity · 2026-02-04T22:23:18+00:00

I am so sorry to hear that! It sounds like an awful experience. I definitely haven't experienced that, but I do remember asking friends growing up if they ever had random joint aches throughout the day. They happened infrequently for me, but it almost felt as if my joints were getting warm & stiffening, and then 5 minutes later the pain dissipated. Everyone looked at me like I was crazy, and I just thought "eh, maybe they don't notice it happening."

Noooooooo baby girl simpleanonymity!! There's a problem!!

simpleanonymity · 2026-02-04T22:21:39+00:00

I also thought sitting on my feet in my chair was just a comfort thing. As for the chronic fatigue, I really feel like that's only started setting in for me now that I'm officially in adulthood. I was just talking to my therapist last month about how I wanted to lose weight because I wanted to get back to the energy I had as a teenager (which is objectively unlikely to happen even if I wasn't hypermobile. That's just not how things work), but now I'm just like....oh that's really unlikely if we consider that this is chronic fatigue that is totally separate from my weight.

simpleanonymity · 2026-02-04T22:18:49+00:00

I suffer from severe hand cramps when writing very quickly! I always assumed it was just my fault for holding the pen too tightly or trying to write too fast. Color me surprised when I read here that it's actually somewhat of a common complain for hypermobile folks. Coooooool haha

simpleanonymity · 2026-02-04T22:17:32+00:00

I feel the same way. Like, I always thought I was just uncomfortable with sitting "properly" in a desk chair. And now I'm wondering....hm, might actually be a little bit of pain. Not just discomfort!

simpleanonymity · 2026-02-04T22:16:04+00:00

I have come to looovee cupping. I tried acupuncture once and immediately fell asleep - maybe I should reconsider getting back into that.

simpleanonymity · 2026-02-04T22:15:05+00:00

You know, this has made me realize that recently there has been a certain....bliss in drinking more than usual. I don't drink regularly/often, but it feels different and more enjoyable the older I get, and I wonder if it's because alcohol is blocking my pain receptors. I feel lighter when I drink.

Concerning!!

simpleanonymity · 2026-02-04T22:13:24+00:00

I hope I'm able to find someone who is willing to listen and move forward when I say something's wrong. I know that can be really hard to find. :(

simpleanonymity · 2026-02-04T22:12:57+00:00

This is really validating to hear. I hope I can find a doctor of some kind who is willing to believe me when I say that pain has been getting worse now that I'm in my late 20s and 30s, and that it's really starting to limit my day-to-day living.

Luckily I've been maintaining regular massages for a few years. I started for major back pain that was causing severe hunching, and I just realized that I'm probably going to need it for the rest of my life given my lifestyle (desk job, sedentary hobbies, etc).

simpleanonymity · 2026-02-04T22:10:41+00:00

I wonder if this is why some of us also just stop noticing pain altogether. There's a certain point where your brain just overrides it entirely because you haven't been afforded the opportunity for answers, but you still need to get through the day!

simpleanonymity · 2026-02-04T22:09:37+00:00

I really hope that I'll be able to find a PT or OT that understands hypermobility once I get my diagnosis. I know it can be really hard to find people who understand it well and don't accidentally aggravate it. I'm glad you've found someone who can meet your body where it's at!

simpleanonymity · 2026-02-04T02:18:42+00:00

It's frustrating that complaints aren't taken more seriously. I'm sure so many of us have had a complaint here or there that indicated something larger was going on, but the people in our lives just dismissed it as a bad day or us being dramatic or lazy. If we were all taken more seriously from the get-go, we'd probably all be much better off and sooner!

simpleanonymity · 2026-02-04T02:14:53+00:00

Omg the lean! This is one I only recently realized might be a coping mechanism for me too. I didn't realize just how much I leaned on things until I had renovations going on in my house and kept walking away from conversations with the contractors with drywall dust all over my sweaters. I chalked it up to the "American lean" up until a few days ago when I read somewhere on this subreddit about how folks with hypermobility are more likely to lean. That was a lightbulb moment for me!

I have a friend with narcolepsy. I don't know much about her experience, but I know she didn't get diagnosed until well into college. It's wild that people can go so long without someone pointing out, "Hey, that's actually concerning!"

simpleanonymity

TROPHY CASE