Begnin Fasciculation Syndrome by long time BFS’er and independent researcher, Arron Johnson:
How does BFS usually start?
It can happen at any age, with any gender and at any time. It usually starts with a small twitch in a finger or an eye lid. Or in the calf of the leg and just won’t go away. This usually sparks-up some curiosity in the person to look-up what a “twitch” actually is. Only to find outdated information that says something to the tune of continual twitches are an indicator of a MND. Like ALS, which is SO un-true and taken out of context.
How long does BFS last?
In most cases, it is quite a while. such as years. A few people seem to recover fully. But most have varying symptoms that come and go for years. That depending on stress levels, illnesses, not enough sleep and so on.
Are there any treatments for BFS?
It doesn’t look like much is in sight either. After all, it is a benign condition so researchers trying to develop treatments cures for much worse things. The thing with BFS is that “usually” it starts-out slow, with one little twitch. Then progresses into a frenzy of twitches all over your whole body. It will usually stay that way for a while. Then all on it’s own (like stress and anxiety) they will subside to only a few a day.
This is the “norm” but not the absolute rule. With that, people have tried remedies such as copper, magnesium, multivitamins, more sleep, stress and anxiety reducers exercise… There is a very big “placebo effect” with BFS being that it is directly collated with stress and anxiety. So when a person starts taking what they believe will be a “cure”. Their twitches will usually subside. This also happens if nothing is taken at all and BFS sort of runs it’s course.
Many people that have taken remedies. They have later posted on web sites stating that indeed at first, the twitches had subsided. But came back again after all. This again is consistent with taking nothing, hence the placebo effect. With BFS though, it is a matter of what works for you and staying calm. Because although BFS may not be “caused” by stress or anxiety. It most certainly does feed off of it. Ssymptoms will go up and down according to mood, stress, anxiety level, tiredness, illness and so on.
Alleviate stress and anxiety
The only thing that does seem to help are medications to alleviate stress and anxiety. Which in turn help some of the symptoms subside. These can be temporary meds that are used “as needed” which are called “Benzo’s”. Valium, Ativan, Buspar, Xanax and Klonopin are a few brand names of benzo’s. They work very well at reducing severe stress and anxiety and helping you to relax. There are also long term meds for this that are called SSRI’s, such as Paxil, Prozac, Celexia and so on. These commonly take 2 to 4 weeks before they get into your system and start to act.
The big problem with SSRI’s, is that the first symptoms during the first couple of weeks can be really harsh. These side effects include :
- severe anxiety
- body jolts
- hot flashes
- tingling from hell
- slurred speech
- being in a zombie-like state
Getting rid of symptoms like that is the very reason you are taking the meds in the first place. Just remember, these meds do help many people out once they get past the first stages. And remember, with SSRI’s, the first couple of weeks, it all gets much worse before it gets better.
What causes BFS?
Some theories that BFS starts after an illness such as a bout of the flu or a bad sinus infection. That would make some think it has to do with some sort of autoimmune response or post viral response. Some neurologists have started that BFS is caused by irritated nerve endings or irritated muscle linings. These too are wishy washy so far with no real hard evidence as of yet.
There are also the theories that stress and anxiety cause BFS. Stress and anxiety do play a big role in BFS and will make symptoms worse when stress levels are high. Such as right after someone reads that twitches are an indicator of ALS. That usually put the person’s anxiety and stress level off the scales which in turn, makes the symptoms. Which is turn, makes the person even more sure they have ALS, which without weakness or loss of muscle control. It can be a vicious cycle that is very hard to get out of once you get caught in it.
What are the symptoms of BFS?
BFS usually starts in the calves of the fingers / hand area. But in reality, it can start anywhere on your body. It usually starts with a little twitch like you normally get on occasion. But this twitch just won’t go away. It keeps going, and going, and going. Usually, this will last a few days and the twitch will either stop and move somewhere else. Or that twitch might stay and more will pop-up elsewhere.
Along with the twitches comes :
- tremors, visible
- non visible shakes
- pins and needles
- body jolts
An ever changing variety of twitches that go from little tiny one’s that you can see but not feel. To great big thumpers that can move a whole limb. Other symptoms can be cramping and pain. BFS with cramping is known as BCFS, a “Benign Cramp Fasciculation Syndrome”, and it is just about as common as regular BFS.
Exercise intolerance is another common symptom, where you do a little bit of exercise but afterwards you feel like you just ran the Boston Marathon and the pain can last for several days afterwards. Twitching can increase dramatically after exertion or exercise as well. Fatigue is another very common symptom and can be mistaken for weakness associated with ALS, and most of the time, it IS mistaken for clinical weakness. Fatigue can be felt as a “drained” feeling, lack of energy, weak and/or rubbery legs or arms and so on.
What is the difference between “perceived” weakness and “clinical” weakness?
A tell tale sign of ALS is clinical weakness. This is REAL weakness that is permanent and continually progressive. It is caused by dying (or already dead) muscle tissue and/or dead or disconnected nerve endings between the brain and muscles. Once this happens, you lose control over that muscle PERMANENTLY, which leads to dropping things, the inability to unscrew lids off of jars, the inability to hold your coffee cup or even raise your fork to your face when eating.
When it in the legs or feet, falling down or the inability to stand or get up from a chair is common, not being able to stand on your toes or walk on your heels because the muscles are dead. When this clinical weakness is associated with ALS, it migrates onward from that point with no looking back. There are no good days or bad days, meaning, you won’t lose control of your hand one day and regain control of it the next. Once muscles and nerves have died, they are dead and can’t be brought back to life.
Fatigue and “perceived” weakness is common with BFS and can cause weak or rubbery legs, difficulty raising an arm or leg into the air one day, but not the next day, a drained feeling with no energy and even actual “weak” feelings where your arm just feels like lead and you have to rest it constantly. The difference between these kinds of BFS weaknesses from ALS weakness is that BFS weakness (which again isn’t really true weakness at all) will get better in a couple of days, where ALS weakness is continually progressive and NEVER looks back.
A neuro can tell a case or clinical weakness associated with ALS the minute an ALS patient walks through the door. By the time you notice the weakness and/or twitches associated with ALS (enough to warrant making a doctor’s appointment), you would already be a few months into the disease and a good clinical exam will find problems you weren’t even aware of. BFS “weakness” on the other hand, is pretty much only fatigue and although you may “feel” weak or drained-out, if push comes to shove and you put aside the pain, fatigue, stress or whatever else you have, you still have your real strength. I mean if a car was coming at you and you had to jump out of the way, you still could, where an ALS patient couldn’t move at all.
Where do the twitches occur?
They can occur in ANY “voluntary” muscle on (or in) your body. Voluntary muscles are all of the muscles you have to think to control, such as arms, legs, abdomen, tongue, cheeks, eye brows, throat, fingers, back muscles, scalp muscles, ear muscles and so on. Pretty much everywhere on your body can (and usually will at one point or another) twitch, EXCEPT your heart and internal organs that are controlled without having to “think” about them. There are even times where VERY personal areas of your body will twitch, places you never thought you had muscles will twitch as well, so don’t be surprised when this happens.
How do twitches vary?
Twitches with BFS vary greatly.
- A lot of people experience “buzzing” which is actually a very fast, small twitch that feels like someone is holding a vibrator against your skin.
- Other twitches appear as little ripples just under your skin. You can felt but sometimes aren’t.
- Twitches that hit one spot and disappear and there are others (such as finger twitches) that will move the finger to one side, hold it there for a quick second, then release it back to normal.
- The jolt twitches that move a whole body part, such as a hand, an arm or even a leg.
- There are also the creepy – crawly worm like movements often found in the arches of the feet and ankles and calves that you can see but are sometimes not felt, and a lot of people get the body jolts known as myoclonic jolts. These are also benign.
- The hit and run “thumpers where you get one big twitch in one spot and then its gone. It may hit an entirely different spot later or even the same spot over and over again with lots of time in between with no twitching at all.
There really is no “normal or “abnormal twitch with BFS because there is such a wide variety.
ALS twitches on the other hand are a secondary reaction from dying tissue and how hard do you thing dying tissue can twitch? Not very hard at all. Most people diagnosed with ALS never even noticed the twitches and it is common for a doctor to use a type of strobe light to see them with the naked eye because they are so fine and weak. People with ALS “usually go see a doctor because they are falling down or can’t grip and hold their coffee cup anymore or have difficulty getting out of bed or up from a chair.
They usually don’t go in because they noticed twitches. And again, being that twitches are a secondary symptom of ALS, there WILL be other underlying symptoms the doctor will find that will point towards an ALS diagnosis .But that is only after many tests are done. BFS can be diagnosed by a neuro in just a few minutes and ANY twitch that is considered benign, is BFS in one way or another. Some doctors will order tests even though they don’t think anything is wrong. Do NOT be afraid if this happens, because it is VERY common. The doctor has to cover his butt and needs to rule-out, legally on paper that nothing else is going on for the insurance company or just for his (and your) peace of mind.
What is the difference between a BFS twitch and an ALS twitch?
There is a BIG difference between the two. ALS twitches are caused by dying muscle tissue as the nerve endings disconnect between the muscle and brain which in return cause the muscle to die and shrink. This is a SECONDARY action and it ONLY happens AFTER the muscle has started it’s dying process, NOT before.
So with that, ALS twitches (by the time you notice them or IF you even notice them at all) will most certainly have some kind of weakness or immobility of the muscle involved at the same time. Also, ALS twitches and symptoms usually start in a hand or a foot and will migrate from that point forward progressively and continually and relentlessly. They will NOT be random twitches like BFS has. You won’t have a twitch in your finger one second, and a twitch on your back the next and a twitch in your calf the next and a twitch on your tongue the next with ALS. ALS starts in one spot and progresses continually through your body, not at random. ALS twitches are usually very fine and again, have WEAKNESS associated with them.
Is there a blood test to show whether you have BFS or ALS?
No, not really. It is common to have an elevated CPK level with BFS but not always. CPK is a liver enzyme function, could elevated in the presence of BFS or a NMD. Other than that, everything else is usually normal.
What other tests should I do to check for the cause of my twitches?
Lyme Disease (a disease spread by Dear Ticks) is one of the main things to look for as well as Thyroid problems. Both of these can cause very similar twitching, aching and other problems just like BFS. A blood test or two is all you need to check for those.
What other tests should diagnose BFS or ALS?
If you are having symptoms that are scaring you, you need to see a doctor and get a referral to a good neurologist so an EMG and a clinical exam can be performed. This will rule-out any nasty diseases. A neuro might also want to do am MRI of the brain and spine looking for damage caused by a previous accident or injury. This is all pretty standard procedure for any neuro, so don’t surorise if they order a few different tests. It’s only to rule out other things and to cover their butt. keep in mind, ALS is VERY rare, MUCH more rare than BFS.
How long do twitches last?
The twitche can hit one spot one second and be disappear the next. They can also hit one spot and stay there for days, weeks, months and even years in some cases. It is not a bad sign if a twitch stays in one particular spot for extended periods of time. BFS’ers call these “hot spots” and they are VERY common in the calves, arches of the feet, eye brows, eye lids and fingers, but they can also be anywhere else they decide to settle into. At the same time, you can have any number of other spots on your body twitching at any given time. These can be amplified at times of stress and/or anxiety.
You might have some days where you hardly notice any twitches at all, and a few days later, have them from head to toe all day for several days. This is the “norm” for BFS.
Sometimes I can hardly move and am in a lot of pain, is this BFS?
Maybe and maybe not. There is another condition that has many symptoms that cross over with BFS plus pain called Fybromyalgia. This is also a benign condition and has everything from twitches to pain to cramps to fatigue to you name it. There has been speculation by many neuro’s and doctors that BFS and “Fibro” and actually one in the same or at least related somehow. They are both diagnosed simply by elimination the possibility of the nastier diseases and conditions. BCFS is another condition that is basically BFS with cramping and more pain. It too is benign but a little more severe in the symptoms simply because there is pain most of the time along with the other symptoms.
Sometimes I have trouble swallowing, is this BFS?
Actually no. It is more associated with stress and anxiety. What scares some people is that they believe they might have “bulbar onset” ALS and even though ALS in itself is already rare, bulbar onset is even more rare. Bulbar onset is also usually fast spreading and one would lose the ability to talk, chew, move food around in the mouth, swallow and so on pretty rapidly. Stress also has symptoms of swallowing difficulty at times that can last for weeks and months which scares the daylights out of people that haven’t seen a neurologist to rule ALS out.
It’s amazing what stress can cause and what a vicious cycle it brings to people suffering from BFS. The big difference between stress related swallowing / mouth / throat problems over ALS related problems is that ALS is continually progressive and relentless, whereas stress related symptoms will come and go, with days of being just fine or times where you were active and didn’t even notice your symptoms because your mind was off of them. You can’t just make ALS symptoms go away by taking your mind off of them. It doesn’t work that way when you are dealing with dead nerves and muscle tissue. There is another strange symptom that is common with stress related throat problems, noted as the “lump in the throat feeling. This too will pass as time goes on and stress levels calm down.
What should I do now that I have BFS?
Well, it is a benign condition, so there’s not a whole lot to worry about. It usually gets better after a couple of months and after that, it may either subside even more, go away totally or stay the way it is, or it may have good days where you hardly notice anything at all and other days where you could just scream because every inch of your body is twitching or having some kind of BFS symptoms.
Hey, it could be a LOT worse, so try to relax. Start taking it a bit easier in life. Try to get rid of the things that stress you out or cause you anxiety because these two demons will only amplify any symptoms you have or bring back one you thought you got rid of. Try to relax more and sleep better.
If you need “help”, then get a prescription for a good medication to help you reduce stress and anxiety and sleep better. If you are one of the few that have BFS without exercise intolerance, then try a light exercise regiment or yoga. For those that do have exercise intolerance, do only as much as you feel comfortable doing and nothing more. There is no reason to make life miserable because you “heard” that exercise was good for you. In this case, maybe it isn’t “good for you”. Pain and fatigue is NOT good and there’s no need to aggravate it even more by over doing it.
Are there things that can make BFS twitches worse?
Absolutely! Stress and anxiety will make twitches and other BFS symptoms much worse. Caffeine can make them worse or one that have gone away, flare-up. Not getting enough sleep can aggravate them. Drinking alcohol or smoking can make the twitches and symptoms worse, especially if you over do it at the local watering hole the night before. The day after will be pretty bad. Over exertion or too much exercise will make symptoms much worse. Testing yourself for strength loss will cause all kinds of symptoms to pop-up and get worse.
This includes walking up stairs, doing push-ups and pull-ups, trying to lift heavy things, running, jumping, walking on your heels or toes and all of the other silly things we do to test our strength to make sure we are not getting any weaker. The reason your symptoms get worse by testing yourself is that you are doing movements and straining yourself in ways that you haven’t done in a long time. It is also due to the frequency of your tests. You might think you only did a couple of push-ups today, and maybe a few heel – toe walks and a quick sprint up some stairs.
Well, that right there is a lot more than you have probably done in a long time and it really adds-up. A day or two of testing your strength can really bring-on some pains, aches, cramps, twitches and so on that you will most certainly perceive as more ALS symptoms, when in reality, nothing could be further from the truth. It is possible to cause a twitch to happen sometimes by stretching or yawning. You can cause abdomen twitches by coughing. You can sometimes get twitches right after flexing a muscle real hard and so on. These are all common things with BFS and are nothing to worry about.
You are NOT alone with these strange symptoms. There are LOTS of people with the exact same symptoms as you and they carry-on normal lives once they have learned to deal with these strange, and sometimes scary symptoms and realize that it has noting to do with ALS at all.. Time is on your side with BFS, because the longer you have it with no serious symptoms (weakness and loss of muscle control mainly), the more likely it is nothing to worry about. Good luck to you!”