BFS: Symptoms Beyond Muscle Twitching

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D

Drogulus

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BFS causes neuromuscular symptomsif you are having stomach cramps, headaches, toothaches, skin rashes, or other physical symptomsit is probably totally unrelated to BFSor at most, could be related to anxiety that many people with BFS have
 
I could see some of that stuff being related to BFS. Like toothaches. I mean, if you have hypersensitive nerves, why wouldn't you have random tooth pain that just comes and goes?
 
I guess you could be right on that one, Mario Maybe we really don't know with some of this stuff. Nerves are everywhere.......
 
It amazes me also and I feel concerned for some one coming to this site for the first time. They might be overwhelmed by reading symptoms possibly unconnected to BFS and a fuzzy logic!! on causes and treatments. Apologies as that comment is not meant to offend anyone's reasoning, but this has occurred to me more than once.With respect Martin
 
I like to stick with the definition of BFS as what the doctors note in twitching and possibly muscle pain.Beyond that, I think there are just certain etiologies out there that share a spectrum of issues including BFS.For example, some of us start out with anxiety, IBS, have some chronic tension pain, and then arrive at BFS.I won't speculate as to why, but even my neurologist was asking me if I had IBS or anxiety. He said they correlate, and he ran a neuromuscular clinic at a major research hospital for 20 years.
 
This issue has come up with my docs. I have several medical issues that cannot be related to BFS/PNH. But some people do want to try to explain all clinical signs and symptoms with just one disease or disorder.Also, as I've learned, there are a great many things the brain does not have much if any effect on. These have to be addressed separately. As one doc I know pointed out, however, a person with one autoimmune disorder (if BFS/PNH is an autoimmune disorder) is more likely to develop another than someone who has no such disorder. In that sense, at least, there may be a connection between BFS/PNH and other seemingly unrelated disorders.
 
I don't think it's very useful to restrict BFS to the textbook definition of "fasciculations of the feet and calves in healthy people". That's nothing more than a slight annoyance, almost everybody has this, but few people even think twice about it. With this narrow definition, BFS is not an illness at all, it's physiological. This definition is the reason why many neurologists won't accept that fasciculations above the knee are part of BFS.But this forum is really at least as much about anxiety as it is about twitching, so I think a second form of BFS is caused by a constant state of panic that commonly existed even before the first twitch is seen or felt and goes ballistic after reading about ALS on the Internet. This anxiety leads to a "generalized hyperexitability" which causes twitching and all kinds of other stress-related symptoms. I think this is the most common form of "BFS" here, so it's useful to adopt this definition of BFS and understand the other symptoms as part of BFS.
 
Nothing in the body is completely isolated from anything else. Our body is a system of parts that work together in harmony. If something is out of balance, it affects everything else upstream or downstream. An important aspect to our health that is often ignored by conventional medical doctors is the energy pathways, referred to as meridians by eastern medicine. If you've ever heard of soldiers who come back home from war overseas missing limbs and suffering from 'phantom limb pain', there has been much success in helping manage or eliminate this pain through acupuncture or acupressure therapy. The Air Force started using acupuncture in 2008 because its success could not be denied. The reason pain in one area of the body can be treated by manipulating the energy pathways in another part of the body is because this energy network is real and does impact more of our health than most realize. Emotions and thoughts are an important part of the balance to the physical body. When we have anxiety, fears, and other emotional traumas that go unresolved they have a very real impact on our nervous system and digestive system, hence the correlation between gastrointestinal disorders and neurological disorders. This relationship is also to thank when people meditate or use calming/relaxing exercises to ease their symptoms. This is also why BFS cannot be cured with a pill.The placebo affect is a phenomenon used to explain how some people can experience relief in symptoms simply through mental attitude. The placebo affect is often dismissed as a fluke, but when it happens is it not an extremely powerful tool? Why not learn to use the power of your thoughts to process your emotional baggage, re-balance your energy distribution, and allow your physical body to do the natural healing it is currently being prevented from doing? We are all empowered to take control of our circumstances. All you need is to set forth the intention and the will to follow it through.
 
As most of us that have been on this site for a while know, BFS is kind of a catch-all diagnosis. We all have the baseline of twitching, but after that there are any number of "extra" symptoms that plague us just as much as the twitching does. And even in the twitching, there is a large degree of severity. Some of us, like me, twitch thousands (tens of thousands) of times a day in tens of different ways (trembling, rumbling, jerking, small twitches, large twitches, twitches that last for several seconds, twitches that are one and done, hot spots, etc, etc) while others have only a handful a day. All fall under the BFS umbrella.Then, depending on the underlying framework behind your BFS, there are a bunch of other extras that we have to deal with. With me, I believe that this this is an autoimmune issue caused by an immune system that didn't shut off after a bout with a flu bug. That was almost three years ago and I have had issues with canker sores, peculiar skin rashes and occular migraines - all of which can be related to some immune system issue. Each of those come in phases. I got canker sores off an on for about 4 months and have had maybe one or two since. The skin rashes came and went over several months and I still get them every now and then but not very often. The migraine outbreaks are similar. But I don't get the nerve pain that others have gotten nor toothaches or stomach cramps. In fact, other than the BFS (bad enough!) I haven't been sick since this all started (knock on wood). So yes I agree that if it is autoimmue related, then you can get the BFS plus a whole lot of other stuff. Of course a lot of this may be exacerbated by the stress and anxiety that BFS brings, but I really don't think that any of it is caused by stress and anxiety. My neurologist and I have had this discussion several times and he doesn't discount the theory but there is, like most autoimmune issues, no test for it and also no cure. It is a syndrome that is diagnosed by ruling out everything else that it might be. No fun by any means and certainly the relentlessness of it can be draining, but it is benign.
 
It has been 4 months or so since I last posted. Thought I would let the new sufferers know that I recently celebrated my 2 year anniversary since onset of BFS. Like dreadpirate, I have twitched pretty much nonstop for 2 years, some days worse than others, but always present including the aforementioned buzzing, vibrating, shakes, cramping, and even rippling muscles on contraction. Every muscle in my body, and I mean all of them, have twitched from my toes to my scalp including (at times) hard big jerks. My neurologist (a very fine neuro at a large medical center) cleared me of lower motor neuron disease a year ago basically saying "we don't understand it yet." I am an older experienced therapist in a rehab hospital and have seen, even diagnosed, and worked with many ALS, Parkinson's, MS, plus other even more rare neurologically involved patients. None of them present like this. I have no basis for this, but I also agree with dreadpirate that it is most likely an autoimmune disease. I have a fairly clear memory of feeling run down with almost a fever like chill the week before onset of twitching. I still enjoy hard exercise, outdoor activities and intend to keep right on plugging. I do find it fatiguing, frustrating, and sometimes mentally exhausting, but I have no intention of backing off or slowing down. We all look forward to the day when research reveals an effective treatment for this, but in the meantime if your neurologist clears you, please do yourself a favor and believe him/her. It is your life. The months will pass. Please don't waste them in fear.
 
I agree that it could be autoimmune.For someone like me, autoimmunity is likely induced by psych stress,such as purported hereI wish in my case that it had been a virus, as then I wouldn't feel like such a dumbass for not reducing my cortisol levels sooner. But it could have been viral, in that I had just gotten a flue shot. If the latter caused it immsure the CDC would prefer I just shut up.
 
Don't tear yourself up because you had high anxiety and cortisol levels because we all have had the same problems. BFS is a very strange disorder and its no wonder that people freak out when they get it. In the long run, I think the disorder gives all of us a big heads up that we are doing thing that are not healthy. As has been posted many times on this Board anxiety will kill you but BFS will only annoy you. In some ways I think my spiritual/ emotional outlook has improved because of BFS. I now prioritize sleep, relaxation and doing the things that make me happy.
 

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