Bed bound

Anyone become bedbound ill because of this condition? And feel like death? No one understands how I can feel this bad because of this condition, they don’t understand I’m so burned out that I can’t function. I feel really ill, worse that any flu, no strength to sit up, go anywhere, wash myself, eat most of times, etc, my heart pounds so much and can’t handle being stimulated

I got an email with your post included, but with this website format, I couldn’t find it in the general discussions. But I felt compelled to respond to it. The only way I could get to it was to click on the email I got with with your topic. Regardless, my son was bed bound for years and he could NOT function, so I do understand completely. You can go back and read some of my old posts (earmom) to read my son’s story, but you are not alone in this and there is hope. My son is great today. He has had 4 styloidectomies over the years but he is pain free and working to get back into the world. Hang in there. I hope you have an advocate, a friend, parent, partner, someone, anyone - who can help you get through this.

HI, I don’t know how to get to your topics and stories…but I know to know them…are you on Facebook by any chance, or is there another way for us to chat?