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Year Long Progression of Neurological Symptoms. Exhausted. Angry.
Brain & Nervous System | Last Active: Aug 24, 2022 | Replies (33)Comment receiving replies
Hi, thank you for your reply. Yes, I have had one in-lab sleep study, and one at home. Neither were all that conclusive. The problem is these symptoms have to be "flared-up" when I go in otherwise nothing will show. Neither has lined up yet in that manner. I filmed some sleep on my own and shared with doctors. In the study, I definitely had some "sleep movements" during both REM and non REM stages. REM Sleep disorder was discussed, but neither myself nor the specialists believe that is in play. No major thrashing, acting out. Simpler movements, arms, facial ticks, hypnic jerks etc... Last night I had one major "jerk" that rattled me as I went from wake-sleep state, which is normally when they occur. I also had an "olfactory hallucination" where I smelled rot/rubbish/decay for no reason. This would last a few seconds, go away, etc.. So strange. I don't know these "symptoms" even exist / are possible until I experience them and am forced to play Dr Google.
My appetite is fine. No weight issues. Yes @rwinney , would be open to hearing any thoughts you may have.
Thank you.
Replies to "Hi, thank you for your reply. Yes, I have had one in-lab sleep study, and one..."
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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@sherwood06,
You still might consider physical therapy or seeing a Physical Medicine and Rehabilitation specialist, also known as a physiatrist.
While you feel that your own exercise regime/activity should be sufficient it would be a good idea to get a second opinion. These folks are trained to get the most out of your body and keep it in good working condition.
Are you willing to try it?