← Return to Year Long Progression of Neurological Symptoms. Exhausted. Angry.

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@rwinney

Hello @sherwood06, I'm Rachel, it's nice to meet you. I'm very happy you came to Connect looking for answers, that's how I started out too. Thanks to @hopeful33250 for suggesting I may be of some help.

In reading your posts, I am pleased to learn that you are in tune with physical activity, given your past hockey life, and that you embrace meditation/spirituality. You are in the right direction!

It's unfortunate that you suffer from chronic pain and symptoms, I'm right there with you. It appears FND throws a lot your way, plus your spinal fusions, sleep disturbances, flares, etc...The "vastness of your symptoms", as you mention, brings me to a very familiar place which is Central Sensitization Syndrome (CSS).

I, like you, spun my wheels trying to get a handle on all my "stuff". Yes, a lot of it had diagnoses like Small Fiber Neuropathy, migraine, insomnia, herniated discs, Fuchs Dystrophy....blah, blah, blah, but I discovered there was a much bigger picture that was an umbrella to it all called Central Sensitization Syndrome (CSS). CSS is an upregulation of the Central Nervous System causing the brain to receive louder messages from the body. Once acute issues turn chronic from this upregulation, there is nothing left but to learn how to manage symptoms and find the best quality of life. In order to do so it takes a comprehensive approach of 4 main categories:

Physical
Emotional
Behavioral
Chemical

It appears FND requires this same approach. So much gets out of control when we are fighting to understand what's happening to our bodies. It's kind of like a forest fire that needs to be calmed and managed. There is hope, and a plan.
https://www.youtube.com/watch?v=8defN4iIbho
Do you mind watching this video presentation from Mayo Clinic's Dr. Sletten to help you understand CSS, and see if it hits home? Do you think this lines up with your plethora of symptoms? Will you let me know your thoughts?

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Replies to "Hello @sherwood06, I'm Rachel, it's nice to meet you. I'm very happy you came to Connect..."

Thank you Rachel. I appreciate all your insight and guidance. One thing that I struggle with is "Once acute issues turn chronic from this upregulation, there is nothing left but to learn how to manage symptoms and find the best quality of life." This sounds less than promising. Based on your understanding, is there any way to disrupt those faulty connections? I couldn't live like this. Just being honest. There is no consistency or pattern, except there is something every day...and I definitely seem to be trending in the wrong direction. If my leg was weak every day, I could live with that. If my feet burned every day, I could live with that. This is something that doesn't allow you to plan for the day as you don't know what you'll experience, you just know it won't be fun. Where did you learn to differentiate CSS from FND?

I too have all these strange symptoms. I tried to watch the video and it will not work, it said the video is private.