Hi, I am replying in a different thread because this one is more on the topic you are asking about. I'd say that salt alone is not enough. Most of us with OI work with many things including salt, electrolytes, compression garments and often one or more prescriptions like florinef or midodrine. There are other medications too but all the medications for OI work for some and not others so there is usually a fairly long experimentation period.
Thank you so much for this answer!! OI has been one of my worst symptoms: standing has become very hard, painful, and it makes all symptoms worse, it’s the worst thing ever for me
Aches, fatigue, exaustion, really bad stuff.
If you don’t mind me asking, how do I find out more information about what people are doing...when you say “most of us”, like how do I join the community, so I can, too, learn about what people are doing how do I find out this information, too?? I need to very badly. I’m suffering with a very severe case of CFS, I’ve lost my life to this, really. I’m bed bound, lots of cognitive issues, can’t leave the home, horrible PEM, and need lots of help, but my cognitive difficulties resulting from the disease make it so difficult to read stuff, I mostly just listen to music or sleep. I really don’t have the energy to be looking stuff up. It’s not selfishness, I just can’t. so I’m stuck in a horrible trap, getting worse, but struggling to do anything about it, and every day gets worse, and worse, so it’s like a trap and a horrible horrible cycle of desperation!! I just need info on where to look so I can be part of the community better, because I want to get better so bad but it’s hard to know where to look, but for me especially it’s become hard to even have the energy to do anything at all that’s not sleeping/being tired. I don’t wanna be stuck in this cycle!! I want to know what to do, I just have all Classic symptoms of ME. The whole only 10% of energy thing is totally true. I know it wasn’t Viral, and I’ve already somehow learned about OI. But how do I get informed on all of this, where do I look first?? Please guide me??