- CASE FILE
Looking for a cure for Benign Fasiculation Syndrome: Body wide muscle twitches, muscle & joint pain, anxiety all started after a cold. 7+ mo
ABOUT THIS CASE FILE
I want to preface this by saying that when I read other's case files and think about my condition in comparison to other syndromes, I am thankful and feel terrible about letting this syndrome take such a toll on me when, for all intents and purposes, I am healthy. But here is my story... After a cold the 1st of the year I started noticing big tricep muscle twitches at night when I was trying to fall asleep. After a few days, it was starting to worry me and freak me out honestly. We've all had random muscles twitches but they usually don't last or reoccur in the same spot. After my initial worries began, I broke out in body wide, daily muscle twitches. I've also experience random muscle pains, stiffness and soreness. At some points it has hurt to hold my hand together to brush my teeth or eat with chopsticks - yet I haven't lost strength in my hand and I am eternally grateful for that. The twitches are not always soft and undetectable. At many points I couldn't sit still to do work or relax without being distracted by the intensity or frequency of them. After tests done by primary care doctor and rheumatologist couldn't find anything wrong, I saw a neurologist. The neurologist diagnosed me with Benign Fasiculation Syndrome. A syndrome that not many people know about (unless they have it) and there isn't a lot of studies on because the person is essentially perfectly healthy. To make sure, the neurologist ordered an EMG. The EMG showed the fasiculations but no other signs of an MND. About a week or so after the twitches initially started, intense health anxiety started. In studies about anxiety with Benign Fasiculation Syndrome and ALS - the level of anxiety was almost the same in the BFS patients who are inherently healthy and the ALS patients. The emotional toll this experience has had on me is so bizarre because the doctors are telling me I'm healthy. The internet is in part to blame with the access to stories of rare cases of ALS etc. At some points my anxiety was crippling. I joined a Facebook group with thousands of other members who have BFS. Most suffer from worse anxiety and sensory symptoms of BFS. It is my first time dealing with a syndrome/illness/disease where there is nothing you can really do about it. They don't know specifically why it starts or when or if it'll end but the peripheral nervous system somehow stopped working properly. I've decided to seek the help of a functional medicine doctor and luckily my insurance took one provider that was close to Boston. Not many have the luxury or insurance that covers a doctor of this kind. My experience with the functional medicine doctor and nutritionist so far has been hopeful. Instead of telling me I'm fine and will need to learn to live with it, they are looking into different aspects of my health that could be causing this. I'm currently trying an elimination diet, taking new vitamins, considering IV vitamin infusions, trying to incorporate a mind body routine into my daily life and am interested in any other avenues the doctors want to explore because I'd rather not live with the twitching. In the facebook group of people with BFS, there hasn't been any combination of lifestyle choices, treatment or vitamins yet that has proven to stop the condition. I recently studied for my personal training certificate. There are so many bodily functions that connect the brain and the muscles, it's kind of baffling how science can't pinpoint which one has gone rogue and how to fix it for BFS. I've noticed about 50% improvement in frequency and intensity of the twitches during the elimination portion of the elimination diet (eliminating all possible irritants including alcohol and caffeine) and it makes me think this has to do with inflammation. Reading into Tom Brady's method, it seems that lifestyle could help and stop most chronic health conditions and I wonder if I continued this diet I'd continue to see improvements. It's interesting because I've always considered myself really healthy. I used to cheer for the Patriots, I've worked out since high school, I own a barre studio and generally try to live healthy. Probably went on a tangent there, but the moral of my story is I'd rather see time and resources put into finding a cure for MND, but if you have a show about muscle twitches/health anxiety please let me know if I can help.