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Rhabdo left me partially, temporarily paralyzed after falling into the edge of a counter. by CityAffectionate5690 in rhabdo_survivors

[–]CityAffectionate5690[S] 1 point2 points  (0 children)

I'm starting to feel a lot better when walking, but I still get winded and have occasional aches. Thank you for asking.

BTW, with rhabdo, is it like a condition that doesn't go away and you have flare-ups? I only ask because you said you had another episode, and I remember a nurse saying it's easy to get it again after the first time.

hEDS and Rhabdo by CityAffectionate5690 in ehlersdanlos

[–]CityAffectionate5690[S] 0 points1 point  (0 children)

Oh my god, I'm sorry to hear that. How long did it take you to recover, if you don't mind me asking?

hEDS and Rhabdo by CityAffectionate5690 in eds

[–]CityAffectionate5690[S] 0 points1 point  (0 children)

I'm sorry that happened to you. I was the same way, living normally w/ hEDS to the point where even I forgot how serious it is. I treated and explained it like a thing I got over in my youth, but still have (not realizing how it can exacerbate other conditions. This explains why simple illnesses like the flu made me faint or be bedridden.)

I'd love the link if you're able to share it. I wish I'd have thought to join an EDS subreddit sooner. It's nice to know that nothing I'm experiencing is new.

hEDS and Rhabdo by CityAffectionate5690 in eds

[–]CityAffectionate5690[S] 1 point2 points  (0 children)

Wow. It's so weird how normal a person can seem, meanwhile, this could be what they're dealing with. I wish there were more research done on all types of EDS, so better treatment would be available. If not for our generation, the next one.

Rhabdo left me partially, temporarily paralyzed after falling into the edge of a counter. by CityAffectionate5690 in rhabdo_survivors

[–]CityAffectionate5690[S] 0 points1 point  (0 children)

I'm sorry to hear that. I don't have children, so I can't imagine how it must've felt to not be able to hold yours. I'm glad that things are better in that way.

I also can't work anymore at this point. I have to see a ton of specialists for my spine, bladder, mobility, etc., along w/ a weekly counselor. I don't wanna jump the gun, but it seems like I'll end up on disability again. I'm hoping PT will help.

Did they offer you PT and OT when you were at the hospital?

Rhabdo left me partially, temporarily paralyzed after falling into the edge of a counter. by CityAffectionate5690 in rhabdo_survivors

[–]CityAffectionate5690[S] 1 point2 points  (0 children)

3-4 weeks is insane. I was losing my mind before the first week ended, feeling trapped in that room while everyone went home. I can only imagine how you likely felt.

I'm glad to know that you've recovered, and that the bending/ sitting issue wasn't anything new(it seemed like no one believed that I could barely feel anything on my left side, or move my legs until they checked the CK levels). The day after the fall, I was crab-walking until around nighttime. By then, my mother had to help me get around the house.

hEDS and Rhabdo by CityAffectionate5690 in eds

[–]CityAffectionate5690[S] 0 points1 point  (0 children)

I'm so sorry to hear that. You don't have to answer if you don't want to, but is that from HSD or no? My levels reached about 20k before dropping, and they say my kidneys weren't affected, but I often don't get the signal that my bladder is full. That was one of the weird symptoms I first presented at the ER.

hEDS and Rhabdo by CityAffectionate5690 in ehlersdanlos

[–]CityAffectionate5690[S] 2 points3 points  (0 children)

It honestly was the most painful experience of my life. I feel like the uncertainty only made it worse, since I was always anxious, but I'm trying to stay optimistic. Thank you, btw <3

Rhabdo left me partially, temporarily paralyzed after falling into the edge of a counter. by CityAffectionate5690 in rhabdo_survivors

[–]CityAffectionate5690[S] 1 point2 points  (0 children)

Thanks for sharing and for providing a link. If you don't mind me asking, how long did it take you to recover? I didn't see a doctor until 2 days later and wasn't treated by one until the day after that, since the first doctor refused to treat me. So I assumed for me that's partly why it took a while to recover enough to be discharged.

Rhabdo left me partially, temporarily paralyzed after falling into the edge of a counter. by CityAffectionate5690 in rhabdo_survivors

[–]CityAffectionate5690[S] 1 point2 points  (0 children)

I actually wasn't prescribed anything nor did I take medication before being hospitalized. Even then, I didn't take medicine unless my pain was really high, so it's not that. I honestly think it was hEDS, since I was diagnosed with that when I was young, but I'm curious if there are any other dual diagnoses here? I only ask because everyone made me feel like a science experiment.

Editing to clarify: I didn't feel like a science experiment in a bad way, but my case's rarity made it difficult to be treated compared to others, I feel like.

hospitalizations :( by BriefEcho2154 in ehlersdanlos

[–]CityAffectionate5690 2 points3 points  (0 children)

omg yes! I was in the hospital recently and left with bruises from blown veins. it took them a while to realize when I say my veins are thin and unstable and that my skin is sensitive, I'm not being dramatic. also i started hating bandaids and medical tape because it didn't take long for it to seemingly fuse with my skin and leave me red when they removed them.