alyLeoNCali
Well-known member
Hi. Here's my (long) introduction to this forum. (With an offer to participate in BFS research if there's ever an opportunity!)
My family doctors probably don't even know about BFS. There are a lot of stressful things in my life, and the docs treated me with the assumption that stress was causing my symptoms. I realize that many here can correlate stress with BFS. But it's my opinion that the stress is a trigger, not a cause. I feel certain there's a physical cause.
I am fairly convinced of the dominant theory, which is that BFS is an autoimmune response to a virus. It's not scientific to present only the pieces that support the hypothesis, but here's my personal chronology, admittedly hindsight-informed:
I'm a woman in my 40's, and I've been shivery, shaky and twitchy for 3 months now.
Two years ago, I was followed by my family doctor for a couple of weeks when she realized I'd had a mild fever for awhile (weeks?) without any other symptoms. In a few weeks, the fever just went away. No big.
A few months later, I was aware of a vibrating, buzzing feeling in both feet. After 2 months of no change, got bloodwork done (OK) and NCS by neurologist. Nothing remarkable. Since there's peripheral neuropathy in a few elderly members of my family, we figured maybe it was just the very beginning of that. Again, no big. The sensation in my feet was not at all painful, just "there." After several months, I stopped being aware of it. It was probably my first sign of BFS, not that I knew what BFS was.
One day 3 months ago, a friend and I hiked in the woods and unwittingly offered ourselves up to dozens of chiggers and a few ticks. (One of those tiny deer ticks spent several days between my toes before I discovered it, yuck.) I believe this was the big trigger for me.
Just 1.5 weeks after the bug attack, I got swollen glands, exhaustion, and a shaky feeling (like too much caffeine, or more like I'd just been scared). That's when the twitching started. For a few days, I had visible repetitive twitches in a thumb. Got terrified I had Parkinson's Disease. Docs assured me it wasn't Parkinson's and said stress was my problem. Took Xanax for a couple days (nice buzz but no decrease in symptoms). Have been on Zoloft SSRI since then (maybe I smile more, but no decrease in symptoms). The visible twitches went away, but now it's the generalized fasciculations. And there's the constant "shaky inside" feeling. Wobbly feeling when I walk, but no actual weakness (I hope). My feet have resumed that vibrating sensation. Someone said BFS seems to put the body in a hyperreactive state. That rang so true. I feel jittery, and also like I'm just about to shiver. By the way, if you're embarking on SSRI treatment, it was my experience that the side effects did go away after a week or two of misery.
And I'm not saying herpes simplex has caused my BFS (or anyone's), but there seems to be a connection. Don't even know if I have herpes simplex, but I read that perhaps 80% of the population does. I do occasionally get a few blisters on my finger tips that I read once were "herpetic whitlows," although mine seem far milder than the example photos! Guess what? Shortly after I begain with the shakes & twitches, I started getting these finger blisters by the dozens, however mild. Cause or effect, I dunno.
The friend who also got the bug bites 3 months ago? She just came down with Bell's Palsy, which is believed to be caused by the herpes simplex virus. Could the insect bites have been an environmental trigger for my BFS and her Bell's Palsy? Now that I know of a link between fasciculations and Lyme Disease, I asked my friend to ask her doc about possible Lyme Disease. He told her that there's no need to test for it, because neither she nor I have aching joints, and because Lyme Disease is not common in North Carolina.
Then there are hormonal changes due to impending menopause that may be a contributing factor, not that this factor applies to the guys here!
No wonder there's no cure for BFS, if the cause is perhaps a mild virus whose effects aren't noticeable until they're triggered, later, by any of numerous things (another virus, psychological stress, chemical exposure, anxiety, exercise, immunizations, hormonal changes, etc., you can add to the list)!
In conclusion...I'm guessing my symptoms sound familiar to many of you. Having read many of your posts before joining, I am impressed with this forum. It is wonderful to have a place where we can share the annoyances of BFS but can also appreciate the "benignity" of it. Most of us have worried ourselves sick before getting to a place where we are relieved not to have a more serious condition. I'm sorry that some go on to get a diagnosis of one of those more serious conditions. But to find something positive in BFS, the fear reaffirms our perspective that there are no guarantees in life anyhow. Maybe BFS particularly affects bright people?
As annoying as BFS is, I CAN live with it. Sounds like it could last years or even a lifetime.
My personal silver lining to BFS: I love coffee but have tried to minimize my indulgence, given its side effects of jitters and sleeplessness? Well, with BFS, I have jitters and sleeplessness anyway, so I can drink all the coffee I want!
)
--alyLeoNCali
My family doctors probably don't even know about BFS. There are a lot of stressful things in my life, and the docs treated me with the assumption that stress was causing my symptoms. I realize that many here can correlate stress with BFS. But it's my opinion that the stress is a trigger, not a cause. I feel certain there's a physical cause.
I am fairly convinced of the dominant theory, which is that BFS is an autoimmune response to a virus. It's not scientific to present only the pieces that support the hypothesis, but here's my personal chronology, admittedly hindsight-informed:
I'm a woman in my 40's, and I've been shivery, shaky and twitchy for 3 months now.
Two years ago, I was followed by my family doctor for a couple of weeks when she realized I'd had a mild fever for awhile (weeks?) without any other symptoms. In a few weeks, the fever just went away. No big.
A few months later, I was aware of a vibrating, buzzing feeling in both feet. After 2 months of no change, got bloodwork done (OK) and NCS by neurologist. Nothing remarkable. Since there's peripheral neuropathy in a few elderly members of my family, we figured maybe it was just the very beginning of that. Again, no big. The sensation in my feet was not at all painful, just "there." After several months, I stopped being aware of it. It was probably my first sign of BFS, not that I knew what BFS was.
One day 3 months ago, a friend and I hiked in the woods and unwittingly offered ourselves up to dozens of chiggers and a few ticks. (One of those tiny deer ticks spent several days between my toes before I discovered it, yuck.) I believe this was the big trigger for me.
Just 1.5 weeks after the bug attack, I got swollen glands, exhaustion, and a shaky feeling (like too much caffeine, or more like I'd just been scared). That's when the twitching started. For a few days, I had visible repetitive twitches in a thumb. Got terrified I had Parkinson's Disease. Docs assured me it wasn't Parkinson's and said stress was my problem. Took Xanax for a couple days (nice buzz but no decrease in symptoms). Have been on Zoloft SSRI since then (maybe I smile more, but no decrease in symptoms). The visible twitches went away, but now it's the generalized fasciculations. And there's the constant "shaky inside" feeling. Wobbly feeling when I walk, but no actual weakness (I hope). My feet have resumed that vibrating sensation. Someone said BFS seems to put the body in a hyperreactive state. That rang so true. I feel jittery, and also like I'm just about to shiver. By the way, if you're embarking on SSRI treatment, it was my experience that the side effects did go away after a week or two of misery.
And I'm not saying herpes simplex has caused my BFS (or anyone's), but there seems to be a connection. Don't even know if I have herpes simplex, but I read that perhaps 80% of the population does. I do occasionally get a few blisters on my finger tips that I read once were "herpetic whitlows," although mine seem far milder than the example photos! Guess what? Shortly after I begain with the shakes & twitches, I started getting these finger blisters by the dozens, however mild. Cause or effect, I dunno.
The friend who also got the bug bites 3 months ago? She just came down with Bell's Palsy, which is believed to be caused by the herpes simplex virus. Could the insect bites have been an environmental trigger for my BFS and her Bell's Palsy? Now that I know of a link between fasciculations and Lyme Disease, I asked my friend to ask her doc about possible Lyme Disease. He told her that there's no need to test for it, because neither she nor I have aching joints, and because Lyme Disease is not common in North Carolina.
Then there are hormonal changes due to impending menopause that may be a contributing factor, not that this factor applies to the guys here!
No wonder there's no cure for BFS, if the cause is perhaps a mild virus whose effects aren't noticeable until they're triggered, later, by any of numerous things (another virus, psychological stress, chemical exposure, anxiety, exercise, immunizations, hormonal changes, etc., you can add to the list)!
In conclusion...I'm guessing my symptoms sound familiar to many of you. Having read many of your posts before joining, I am impressed with this forum. It is wonderful to have a place where we can share the annoyances of BFS but can also appreciate the "benignity" of it. Most of us have worried ourselves sick before getting to a place where we are relieved not to have a more serious condition. I'm sorry that some go on to get a diagnosis of one of those more serious conditions. But to find something positive in BFS, the fear reaffirms our perspective that there are no guarantees in life anyhow. Maybe BFS particularly affects bright people?
As annoying as BFS is, I CAN live with it. Sounds like it could last years or even a lifetime.
My personal silver lining to BFS: I love coffee but have tried to minimize my indulgence, given its side effects of jitters and sleeplessness? Well, with BFS, I have jitters and sleeplessness anyway, so I can drink all the coffee I want!
)--alyLeoNCali