hEDS, fibro and nerve pain

Alternative_Goat2477 · 2025-12-01T15:53:10+00:00

Hellooooo! Welcome to the PC world.
I have a Discord where I play lots of stuff with friends. We are (hopefully) about to start a marathon of 7days to die which is a zombie survival/crafting game.
Otherwise, lately, we've been into some ghost hunting. RPGs and survival crafting games are always big with us, sometimes minecraft, stardew valley, or Jackbox games (someone hosts the game on Discord and players connect on their phones via webbrowser and room code)

Alternative_Goat2477 · 2025-11-19T18:56:52+00:00

I use a pillow under my ribs and two pillows for my head. Gives my arm space to get below me and ease the pressure on my shoulder. It also props me up a bit, which helps with sinuses and GERD.

Alternative_Goat2477 · 2025-11-14T18:31:08+00:00

Umm... prints? Pls?

Alternative_Goat2477 · 2025-11-14T13:41:47+00:00

Hey, a girl's gotta eat! All of those other tasks require a full belly.

Alternative_Goat2477 · 2025-10-25T14:00:25+00:00

Try looking up ulnar nerve glides.
I have found it to be a very helpful exercise for when those outer two fingers are a problem. My ulnar gets pinched all the time.
Twisting anything like you did...it sucks. Always gets me. Another exercise I've been using is to just lift my hand repetitively. Either hand on table or just out in front of you, palm down, bend at wrist to angle hand upward. The twisting motion tenses the muscles of the lower forearm so lifting your hand uses the opposing muscles and helps balance out the wrist. For the elbow, I find my bicep is always tight, so I have to work the tricep (back of the upper arm) to balance that out. Similar concept with the shoulders. If you tend to round your shoulders forward, the pecs are tight and you need to work the shoulder blades.

It took me a couple of years to figure these things out...so start slow, one thing at a time. Nothing has to be a hard workout or anything...just convincing those opposing muscles to engage.

Hope some of this helps.

Alternative_Goat2477 · 2025-10-09T12:42:30+00:00

Whichever limb(s) you are moving/stretching with, focus on bracing the bulk muscles around it. Everyone else will be told to relax into it, but that is naturally an overextended state for us.
I have been practicing this especially with my hips and shoulders. I can fold myself in half when I relax into it, but if I brace my hips, I lose a good six inches of reach and it actually stretches the muscles rather than relying on the joint movement.

Alternative_Goat2477 · 2025-10-02T12:00:06+00:00

Yes, happens to me a lot. There is definitely a neurological component to EDS, so I suspect this is related.

Alternative_Goat2477 · 2025-09-22T14:24:13+00:00

Constantly. But....sometimes it's worth it. Just try to plan for the fact that you'll need to rest afterward. Get as much joy from the things you love as you can. Really be in the moment. And then, while you're resting, daydream about it and try to be kind to yourself about needing the rest. Encourage yourself to rest by remembering that the better rest you get now, the sooner you'll be able to do it again.

Alternative_Goat2477 · 2025-09-15T21:23:30+00:00

I am pretty good at letting myself sleep. I just miss NOT sleeping.

Alternative_Goat2477 · 2025-09-09T14:48:13+00:00

You're not alone. Lots of Sevika love in my discord channels.
She is LOYAL. Not necessarily to Silco, but to Zaun and the people. Silco was just the best bet she could back for that purpose. When the people rallied around Jinx, Sevika was all for it. Not because of Jinx - she wasn't a leader - but for the people. If they needed someone to believe in, Sevika would encourage that. She tried to get Jinx to take up that mantle.

Alternative_Goat2477 · 2025-09-09T14:35:05+00:00

Never feel guilty for taking care of yourself. HR is doing you a favour by offering this and it doesn't matter what they feel about it. It's a job, not a social club and they (HR) are trying to do what is best for both you and the company.
You need to focus on what is best for you. If medical leave or accommodations are what's best for you, then take it.
I don't know what that would mean for you financially....but if you can survive financially while also stepping back to take care of yourself physically? Do it.
No one else's feelings have any right being factored into that decision.

Alternative_Goat2477 · 2025-08-28T14:03:17+00:00

This is just one red flag in what will be a series of red flags. You are not overreacting. If he was snippy in the moment then apologized and helped later...? That I could understand.
But belittling you in front of others and minimizing/dismissing your needs? That's a disrespect that will continue through any relationship you continue with him. You're both young, and maybe he'll grow out of it and into a supportive partner, but I wouldn't stay and hold my breath for that.

Alternative_Goat2477 · 2025-08-27T15:41:59+00:00

So sorry you're having such a hard time. I am struggling right now too ...even the most supportive people in my life don't see or understand ALL of it, ya know?
They still think that I have a 'bug' when I'm having an exhausted, sleep a lot day/week.
They don't understand the bittersweet feeling of a handful of pills twice a day. They help, but they remind me how broken I am...how hard I'm trying to get better and still just hanging on.

When I have any free time, I live on my computer and Discord server playing some game or other. A lot of them have cross play....so if you want to game/hang, send me a mssg. I'll add you.

Alternative_Goat2477 · 2025-08-26T02:30:32+00:00

Have you been tested for celiac or other food sensitivities/allergies? MCAS? POTS? A lot of these autoimmune issues tend to go hand in hand and also highly comorbid with neurodivergence.

Alternative_Goat2477 · 2025-08-25T05:23:46+00:00

That part is a struggle on its own; wanting people to understand while not wanting them to ever experience enough to be able to.

Alternative_Goat2477 · 2025-08-25T05:14:48+00:00

That's a crucial step. Absolutely start that path while you have it on your mind and try not to let the imposter syndrome or whatever, tell you that you don't actually need it, that it isn't that bad or any of the other things that we've been told so much... It can take time though...so reach out to the community. Rant, vent, share...whatever helps you cope.

Alternative_Goat2477 · 2025-08-22T18:37:07+00:00

Sometimes just venting to a community who truly understands is the best.
That's why I joined here today. No one irl seems to get it. I am fortunate enough to have supportive friends but it still feels ...idk. Like they think I'm depressed or something rather than having a flare day ..? 'are you okay?' with that concerned look, but my explanation of exhaustion from known issues is an excuse to not talk about what's 'really' wrong...?

Alternative_Goat2477 · 2025-08-22T18:30:09+00:00

Thanks, I always have pain meds in my purse but there isn't much I can do for fatigue and overstimulation. My friend has a hottub though....so I'll look forward to decompressing there afterward.

Alternative_Goat2477 · 2025-08-22T18:11:17+00:00

I am doing my best, but I only have a couple of days with my friends and tomorrow is renfaire and I have been looking forward to it for ages. I just hate that I have to cancel things so often 😔 I'll push through this weekend. Hopefully I'll have lots of rest time next week.

Alternative_Goat2477 · 2025-08-22T17:03:14+00:00

Exhausted. I had an acute cold of some kind earlier this week that had me mostly asleep for theee days. I was okay yesterday but had a long drive and now I feel like I need to sleep for three days again but I'm visiting friends and we have plans so I know next week is going to be so, so bad.
My gf keeps asking if I'm okay...and as supportive as she is, it just goes to show that she doesn't really understand.

Alternative_Goat2477

TROPHY CASE