It took me 5 years to be diagnosed this year. i find it very painful, and have walking problems , going ivig treatment at the moment. Thanks for this podcast. Age 43.
For myself: I have found a portable percussion massager to help disrupt localized spasms. I use a healthywave PEMF mat at home 3 times a day. I went full keto 4 months ago and am transitioning to carnivore for the winter. The mat, diet, and massager have helped a lot. Also practicing lymphatic massage "the big 6" daily, and fascia massage and breathing exercises. I'm truly getting my quality of life back
Wow. I am taking a medication that you said can exasperate the symptoms. They haven’t really known what causes them, but today I by chance read up on Celine Dion after Adele gave her a hug. While reading up on this I was struck how familiar the symptoms were to mine. I can’t believe that after years of hunting and searching a hug from Adele brought me here. I can’t wait to call my doctor tomorrow.
Try pemf therapy. Clinical ones are stronger, but I can't travel easily in a vehicle (and can't drive anymore) So I bought a healthywave pemf therapy mat to use at home several times a day. That in conjunction with keto-carnivore diet, plus "the big 6" lymphatic massage and fascia release breathing techniques has helped. I also keep a percussion massager handy to help disrupt spasms. There is hope! I'm getting my life back since starting to treat myself at home. I went months without any good moments, and now I have good days (not normal yet, but better) There is Hope.
Where do I join you please , SPS is a battle zone for me now,
It took me 5 years to be diagnosed this year. i find it very painful, and have walking problems , going ivig treatment at the moment. Thanks for this podcast. Age 43.
For myself: I have found a portable percussion massager to help disrupt localized spasms. I use a healthywave PEMF mat at home 3 times a day. I went full keto 4 months ago and am transitioning to carnivore for the winter.
The mat, diet, and massager have helped a lot. Also practicing lymphatic massage "the big 6" daily, and fascia massage and breathing exercises. I'm truly getting my quality of life back
Wow. I am taking a medication that you said can exasperate the symptoms. They haven’t really known what causes them, but today I by chance read up on Celine Dion after Adele gave her a hug. While reading up on this I was struck how familiar the symptoms were to mine.
I can’t believe that after years of hunting and searching a hug from Adele brought me here.
I can’t wait to call my doctor tomorrow.
I misdiagnosed, mistreated , and it took me over ten years to find the right Dr, And hospital,
So very sorry ,
My B/ P goes through the roof with touch, And I can’t have therapy, Touch to painful ,
Try pemf therapy. Clinical ones are stronger, but I can't travel easily in a vehicle (and can't drive anymore) So I bought a healthywave pemf therapy mat to use at home several times a day. That in conjunction with keto-carnivore diet, plus "the big 6" lymphatic massage and fascia release breathing techniques has helped. I also keep a percussion massager handy to help disrupt spasms. There is hope! I'm getting my life back since starting to treat myself at home. I went months without any good moments, and now I have good days (not normal yet, but better) There is Hope.
I,m progressive, Broken knee for example, Lost independence,
Fibromyalgia