It's been 6 years; here's a bunch of data.

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It's been 6 years; here's a bunch of data.

Postby nessie on May 17th, 2017, 11:25 pm

I just felt it important to chime in after a long time of lurking. I'm a 29 year old male, white, 175 lbs, and developed BFS when I was in college back in '11/12. It started with some twitching down in the calf, and it started to get worse and spread down to my feet. Of course, I went through the enormous anxiety of thinking it something much worse. I even went so far as to get an MRI, costing me upwards of $7000. As time went on, so did the twitching, but it never developed into something life-threatening (though cramping began to develop after a couple years).

My symptoms have remained constant for 5 years: a 24/7 non-stop twitching in both my feet, which results in periodic cramping. I'll get random fasciculations in the eyelids and hands sometimes, but the ever-present twitch is always in the feet, all the time. It gets worse after exercise/physical exertion and is less severe just after waking up (the reason I relate whatever this is to stress). I think one of the most frustrating things is trying to communicate that this is a real thing to other people.

I have other issues as well: I don't sleep very well, I have bouts of prostatitis, I struggle with anxiety, I have odd bowel issues and worry about colon cancer, and I get constant tension headaches that can keep me from performing every-day normal activities. They're very painful/annoying.

For posterity, here's some more data about who I am/my habits:


1) I am relatively poor, and I've struggled to find a career path. I compare myself to my peers who have money and property, and feel badly that I am not "successful"
2) I am single, and a big break-up actually preceded my fasciculations. I don't doubt there is a correlation between large amounts of sustained emotional stress and BFS.
3) I am religious, and underwent a conversion to Catholicism in college. This has helped me frame and re-assess the idea of success, in addition to understanding purpose in the midst of pain.
4) I have struggled with pornography as an escape mechanism, and have wondered periodically if my BFS may have developed because of the odd dopamine spikes and fluctuations due to use.
5) I am slothful. I procrastinate and distract myself, even at work, with reddit, articles, media, video games etc. This is a hard habit to break. Some have diagnosed this characteristic in me as a kind of perfectionism: a fear to begin a task because of the anxiety that I feel when wanting to do everything the best it can be. Sloth leads to anxiety, which leads to more sloth.
6) I am relatively sedentary, I do not get out and exercise daily. When I do exercise, I often push myself too hard. Last summer I did an extremely intense hiking trip for 5 days and obliterated my knees, something I deeply regret.
7) I have odd/sporadic eating habits. I will eat very healthily for a time, cooking all my own meals with fresh organic ingredients, and then I might swing by McDonalds for 2 McChickens. I've tried different diet fads ranging from paleo to intermittent fasting, none of which seem to have decreased symptoms.
8 ) I am not consistent. I might try something (like a diet) for a little while, and if I feel it isn't working within one or two days, I may get discouraged and quit because of the fear that I am doing harm to my body.
9) I've spent hundreds of dollars on supplements (maybe thousands?), to no real avail. You name it, I've probably tried it. Could be that I haven't used the right sups in the right combination in the right dosage, but honestly -- it's so difficult to tell what's legit out there (both information-wise and quality-wise)
10) I spend too much time worrying about my health, and not living this life that I've been given.

Re: BFS Burger, a legend around here--I read his "how I cured BFS" post a while back and decided to try his regimen. I tried an elimination diet getting rid of gluten, corn, sugar, alcohol, caffeine, and dairy for just under month, but did not notice any differences in my symptoms. To be fair: It was only a month, and I wasn't exercising consistently or sleeping very well. Most importantly, I didn't continue this regimen for very long, so I don't know the actual efficacy. I'm considering trying his regimen again and sticking to it for a while. I'll post results if I succeed.

That's all, really. I just wanted to add some data to the pool. If you're reading this and you're new, please don't despair. YOU are in my prayers. There are things within our control, and things that aren't, and remember that worrying has never added a single day to anyone's life (I preach also to myself here). I hope my story might give you some relief, or at least the knowledge that you're not alone.

If you've been around the block, let me know if you have any feedback/cool new diets, studies etc. that might give some hope, or at least give us something to try.

Peace to all of you. The reason for suffering may well be hidden from us, but I believe it to be something that refines us, tests us, and ultimately proves invaluable to our salvation. I've been thinking recently on how unhealthy it is to dwell negatively on the body; it paralyzes us and keeps us from living. Establish goals for yourself outside of only getting healthier, and perhaps real health may just follow.
nessie
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It's been 6 years; here's a bunch of data.

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