So my head is falling off……….literally.

[NamelessEntity]

I have severe EDS and a bunch of other comorbidities. I'm also a wheelchair user and spend most of my time in bed because my whole body is falling apart with a lot of complications.

Recently I've been really struggling to hold my head up , it's too heavy for my neck to support due to being too hypermobile. My joints are struggling and painful, and my muscles are always stiff and tight, trying their best to hold my head in place. There's no way I can afford a doctor right now, and I'm coming to the realization that I'm going to have to ctb or deal with the grim consequences of my slowly deteriorating neck.

 

[Saponification]

I'm so sorry. Our flawed biology is brutal.

 

[Macedonian1987]

I have severe EDS and a bunch of other comorbidities. I'm also a wheelchair user and spend most of my time in bed because my whole body is falling apart with a lot of complications.

Recently I've been really struggling to hold my head up , it's too heavy for my neck to support due to being too hypermobile. My joints are struggling and painful, and my muscles are always stiff and tight, trying their best to hold my head in place. There's no way I can afford a doctor right now, and I'm coming to the realization that I'm going to have to ctb or deal with the grim consequences of my slowly deteriorating neck.

If your neck is feeling like that. I can offer you some exercises that helped me with my weak neck muscles.

 

[NormallyNeurotic]

Do you have a way to buy a cheap neck brace in the meantime (maybe from a drugstore, even if flimsy)? It can at least provide a little support to take pressure off of your muscles (at least to avoid a tear in the near future, since that would certainly be one of the worse consequences). Also, is there a way you could make an online mutual aid request anywhere? I assume not, but I thought I'd ask.

My EDS isn't as bad as yours, and I'm so fucking sorry it's come to this for you. I'm struggling with neck tightness/weakness as well, but not to your extent. I hope whatever happens manages to have minimal suffering. <3

If your neck is feeling like that. I can offer you some exercises that helped me with my weak neck muscles.

EDS is a connective tissue disorder. This isn't just "weak muscles."

 

[Macedonian1987]

Do you have a way to buy a cheap neck brace in the meantime (maybe from a drugstore, even if flimsy)? It can at least provide a little support to take pressure off of your muscles (at least to avoid a tear in the near future, since that would certainly be one of the worse consequences). Also, is there a way you could make an online mutual aid request anywhere? I assume not, but I thought I'd ask.

My EDS isn't as bad as yours, and I'm so fucking sorry it's come to this for you. I'm struggling with neck tightness/weakness as well, but not to your extent. I hope whatever happens manages to have minimal suffering. <3


EDS is a connective tissue disorder. This isn't just "weak muscles."

I'm sorry, I don't know much about EDS, but I still think it's worth trying.

 

[NamelessEntity]

Do you have a way to buy a cheap neck brace in the meantime (maybe from a drugstore, even if flimsy)? It can at least provide a little support to take pressure off of your muscles (at least to avoid a tear in the near future, since that would certainly be one of the worse consequences). Also, is there a way you could make an online mutual aid request anywhere? I assume not, but I thought I'd ask.

My EDS isn't as bad as yours, and I'm so fucking sorry it's come to this for you. I'm struggling with neck tightness/weakness as well, but not to your extent. I hope whatever happens manages to have minimal suffering. <3


EDS is a connective tissue disorder. This isn't just "weak muscles."

Thank you, and that's actually a really good idea! I'm going to get one online now, and I'm sorry you have EDS too — it sucks. The tightness is everywhere, and the pain is so annoying and hard to explain to people in real life. :( Although I wouldn't wish this on anyone, it's nice to feel that I'm not alone, and I hope your EDS doesn't cause you too much suffering either.