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Something new? Update?

Kinda soynds like gastroparesis caused by autonomic polyneuropathy. Disautonomia?? That is what caused my very painful digestive problems. A liquid diet of only enteric formulas is all i can tolerate. When i keep to that strictly my abdominal pain is tolerable some of the time. Sleep depravation is used as a torture technique. When will they understand the extent of torture drs are ok with. THEY ARE DEFINITELY DOING HARM.... What about adherance to the dr's oath to "do no harm"??? Hoping for you get good answers and pain management for sleep! Thank you 4 sharing.

I've never heard anyone discribe the exact same pain in my hands from trying to wash dishes by hand! I have most of the same symptoms that you have that have slowly progressed from childhood. I try to keep up appearances bur the price is higher each time i do try to keep up with "normal" anything. I'm awake with XTREME BURNING pain for up to a week after going to a dr's appointment and needing to walk a city block or so, stand for up to ten excruciating minutes and then sit with 3 major places screaming different notes of tortuous disharmony and intolerable pain but feeling that i MUST NOT SHOW IT so i stubornly persist with all the pleasantries i deem deem necessary likeable and acceptable. Why do i try, is what i ask myself durring the sleepless nights dominated by tortuoys pain. My feet feel like I'd imagine they would feel if they were cooking in a microwave about to explode with boiling heat like potatoes without the preventative punctures to their skins that prevents those explosions from decorating the inside of my microwave with exploded potato!!! As seripys as my symptoms are i do try to laugh and cry at the same time. I've found that laghter does help with my pain but after i fall asleep there is no conscious resistance and the pain becomes all encompassing until i can alluviate it somehow. That means sleeping well for maybe 1/2 of an hour and then repeating all the things that may or may not help hoping for that miracle of two or so hours of sleep. I can remember only 4 to 5 times in the last 12 months that i have accidentally (???) slept for a solid 6 hours!!! Sorry for needing to do a bit of rage venting here. I hope you can forgive me. Best of luck with all the painful things you are dealing with in this video. It's 9 months after? I hope you have found some answers to all your questions. The quest for answers can be a kind of torture as well!! Thank you for sharing your life's painful journey and experiences. It is difficult but helps many people deal with similar realities. This got to long... I think that graphophilia has become a coping mechanism and distraction when I'm feeling so much pain. Please forgive my example of that here. I thought i best deleat most of this but said to my self what the heck!!! Hoping for your good luck and good answers! Thank you !!!

Hey man, It's Chop...I completely feel you on this one, as my leg is constantly dead from my sciatica. Keep up the good vids man!

I hope I never have to experience that

I'm sorry we didn't get to see you last weekend. Our time was so short! I'm grateful for these videos, at least I get to see you. BTW the beard is looking awesome

Invitae will do a full panel dna test to check for different types of CMT. Only cost me $100. Check it out.

Yada yada yada

I have CMT. If you have any questions, let me know. CMT is typically bilateral, and usually affects both hands and feet. More severe cases can cause muscle weakness of the diaphragm and other core muscles, but that is very rare. Hope you figure it out.

Love your party tricks 🤣

I think I have EDS ,now I have pain in the bottom of my feet, after walk or standing, soles of feet become red and hot, somethimes itch. Do you think it can be small fiber neuropathy? Maybie erythromelalgia? Do you have that kind of pain, at the bottom of your feet when walking?

Do you have blurry or double vision as well?

Omg, Eth 😭 <-- my face rn (dang you) ❤ Love ya bud. Always always always always know I'm only a phone call away. ❤❤❤❤❤

❤❤❤ Binge watching your videos. Proud of you and also 😳. Keep sharing and keep pushing. We love ya Eth!

Thank you for sharing your story Eth. So proud of you for stepping out and opening up about this. I know first hand it isn't easy sharing intimate personal information about ourselves. Miss ya bud!

Have you ever tried Neilmed sinus rinse for the sinusitis? It’s magic.

Thanks for teaching us about hEDS and opening up to everyone about your day to day struggles. I look forward to hearing more about the condition and the things you do to get through your days with an invisible illness while still keeping a great sense of humor and being part of your friends and families’ lives. Proud of you dude.