Brain, causing all kinds of problems, including BFS??

Posted by richmocha @richmocha, May 2, 2022

Hello everyone. Please forgive aspects of this post as I was intending to respond to someone, but realize, I want to hear others. Unfortunately, a talk with a friend I haven't spoken with regularly in 6 months, following my longest spiritual fast ever (30 days) has caused anxiety that I have been working through regarding the BFS and everything else that my brain seems to be the center of, (seems Covid unearthed a lot of issues ). "BFS is not normal and you should be concerned!"
The itching was mentioned and reminded me of the weird itching I experienced for a few years in my teens ( am 52 now). As suddenly as it began, it stopped. In 2014, something weird with my body began with lots of nerve pain and seldom leg twitching. After a year of jumping from neuro, to neuro, one sentenced me to MS, but also a study at the NIH; I waited three months for that study. They said no MS, but couldn't tell me why I was having nerve pain. I saw a rheumatologist and he said fibromyalgia, and I took that and ran with it. For about 3 years, eating very meticulously, doing yoga, and strength training, I had kept my symptoms in the category of very doable. 2018 a 40lb weight dropped on my face, crack went through my neck. I did not the wrong thing and DID NOT GO TO THE HOSPITAL until a couple of days later. Six months later, I decided to scare my daughter, hiding in the kitchen I thought safe away from the underside of the granite counter. I jumped up full force and crashed the top of my head into the underside of the counter. I went to urgent care right away. I was loopy for months until I almost passed out some months later. Fogs are a part of my life though it is also a symptom of Fibro and perimenopause. Nerve pain exacerbated, but definitely took a turn at the onset of Covid. My stress has been nonstop and my battle with all sorts of pain as well. Last summer the twitching got worse even as I was taking a low dose antidepressant for perimenopause symptoms. Acupuncture seemed to make it worse in the Fall. On top of that I had a sciatic attack that came out of the blue, and an EMG that was negative- severely painful. My brain even twitches (feels like worms moving around and a sensation like an irritated funny bone or "burning"). Lately, a pinched nerve in my neck, probably from the cracky back and neck from the injury has now become electric shocks in both sides of my neck but is coming along with my twitching. I don't believe anyone, and there are so many things about the brain that doctors don't know; they don't know what is happening to many of us.
I have lost a bit of confidence in myself professionally and personally, and yet, I continue to pray for healing.

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Hello @richmocha and welcome to Mayo Clinic Connect. You certainly have had a long and grueling journey with your symptoms. After reading the complexity of your experiences along with the symptoms that have followed, it made me wonder if you have been seen for care and a hospital that focuses on a multi-disciplinary team approach, meaning departments all working together with a goal of coordinated care?

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@amandajro

Hello @richmocha and welcome to Mayo Clinic Connect. You certainly have had a long and grueling journey with your symptoms. After reading the complexity of your experiences along with the symptoms that have followed, it made me wonder if you have been seen for care and a hospital that focuses on a multi-disciplinary team approach, meaning departments all working together with a goal of coordinated care?

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Hi @amandajro, Thank you for your response, and I appreciate your interest. I am actually a part of Kaiser Permanente where all the doctors are in on my care. However, I have imagined a room where they all sit and discuss care. The one thing I do get to see is that they review the information from each doctor when I meet with someone at any given time, but I think the all in the same room approach would not only be efficient but effective.

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