I don't have a theory about this condition. I have a real life story and I have learned a LOT over this last year. If by posting this I help one person overcome this "condition" I feel it is worth it.
I started with this muscle twitching stuff about a year ago. Of course I started Googling and found this site. While this site has been helpful for those that fear ALS, MS, etc., it had the opposite effect on me. I knew I didn't have those diseases. After reading up on these sites I was convinced that I had a disease or syndrome called BFS or PNHE that wouldn't go away (BTW, I am not blaming anyone but myself, it is how I personally interpreted what I was reading). At the time I just had some twitching in my calves and legs, the more I read about this and read others experiences I started having twitching everywhere, and then soon after that I started with the cramping and burning. At this point I went on a downward spiral. I couldn't exercise or do much physical activity anymore, some days it bothered me just to walk. Because of this I became obsessed with the internet, searching for hours at a time trying to find relief. The more I searched for reassurance the worse I got.
I went to several doctors and even a neuro. At first I was convinced that I had this due to a bad drug reaction I had. However every doctor that I spoke with that was familiar with the drug in question told me that it wasn't the case and it was likely being caused by anxiety. My primary wanted to put me on long term anxiety meds. I asked the neuro about "BFS". He laughed at me and said "BFS is just a term for fascilations that are benign, meaning they are not caused by a disease or anything serious. Normally benign fascilations are caused by stress and anxiety and everyone gets muscle twitching now and then. Some have it for days, some months, some years". That only made me worse and wasn't reassuring because I all I heard was "years". I also was getting upset because I felt I wasn't crazy. I felt when they were telling me it was anxiety that they were just blowing me off or telling me it was all in my head. A couple of doctors recommended that I seek counseling so out of desperation I visited a couple of psycologists and they were both clueless and just cost me more money.
I kept getting worse. Not only was I having all the classic symptoms mentioned here, I started having backaches, odd pains here and there all over. I even had carpal tunnel like pains in my hands and forearms, severe sleep issues (some nights I couldn't sleep at all, most I wake up every 2 hours or so). I really started feeling like I was going out of my mind. I was driving my wife crazy.
One night while doing my obsessive "muscle twitching" searching I got lucky and found a website that I now honestly feel saved my life and explained to me what was going on with my body. It was a site about anxiety and it had muscle twitching as one of the possible symptoms of GAD (General Anxiety Disorder). Well, I felt I didn't have "GAD" but the site had some good info. This site thoroughly explained biologically how an overstimulated nervous system causes muscle twitching and some of the other symptoms I was having. I was telling myself, I don't have GAD but maybe my nervous system is overstimulated for some reason. The author of the site had GAD for 12 years and he had all the same "BFS" symptoms many mention here and then some. After reading his experience I felt like this guy might know what he was talking about. The site had some real good information on the outside but you had to pay to get all the information. At this point I was skeptical but paid the $20 to read everything. It was the best $20 I ever paid.
This site taught me things that doctors either don't know or don't have time to explain. This site also offered personal counseling by the author, his wife and some of their staff. I was so impressed with what I was reading I wanted to give their counseling a try. Why not, I was still searching for answers and it cost half of what counselers around here were charging.
My wife was skeptical about me having counseling over the phone by some people I found on the internet but she was getting desperate herself. We decided to have my first session on speaker phone so she could listen in. My counseler ended up being the wife of the author of the site. To make a long story short, after the hour session my wife was shocked that this lady knew everything that was going on with me. I didn't even have to tell her the half of it. By her questions we both knew she knew what was going on with me.
I told her about all the "BFS" symptoms and she said something like "yep, I hear that all the time, and several times a day in some cases." She said those are typical anxiety symptoms. However I wasn't convinced I had anxiety. She assured me I did. She asked me "are you concerned or worried about your muscle twitching symptoms? Do you think about them often and fear they won't go away? Are you concerned that you are somehow damaged?". Of course my answer was yes to all of the above. She replied "That is anxiety. Worry and concern is anxiety that produces stress hormones. This is not in your head and you are not crazy. This is a real physical condition. Stress hormones produced by worry and concern stimulate the nervous system which start causing physical symptoms. When we keep worrying, we overstimulate our nervous system causes more symptoms which in turn generally causes more worry, which entrenches our symptoms. This becomes a vicious cycle and when a person gets to this point the worry and anxiety becomes entrenched and that is when we call it GAD.".
She also told me that the initial stress doesn't have to be from "worry and concern". It could come from a physical source like an illness, virus, exhaustion, over exercise, etc. This was interesting to me because when this all started I had just started working out a lot. I was pushing my body more than I ever had before and I had just lost about 30 pounds. I also remembered many people on this site saying that this all started after an illness like a virus.
Her husband has on his site an example of someone who reacts anxiously and develops and anxiety condtion opposed to someone who acts in a "healthy" way. It went something like this. Let's say 2 people get a virus which stresses their body, or they have a lot going on at their job which stresses them. Both people start getting some physical symptoms of stress, let's say muscle twitching in the eye lids. Both go to their doctor to find out what is wrong. The doctor tells both of them that it is due to stress, is nothing to worry about and they should go home and rest for a few days. The first patient reacts "healhty" and fully accepts what the doctor says. That patient goes home, does some relaxing things, gets some rest and never gives it a second thought however while still having symptoms. The symptoms eventually do fade since it takes time for the nervous system to calm down. On the other hand, the second patient reacts "anxiously". Instead of accepting the doctors diagnosis, that patient goes home and starts searching the internet because the doctor surely missed something. This patient has now started the worry & concern cycle. This creates more stress causing more stress hormone releases and increases the symptoms (muscle twitching now getting worse and spreading to the whole body). Because of the increase in symptoms this patient has even become more worried and concerned and is now obsessed, fueling the vicious cycle. This patient now has an entrenched anxiety condition.
Now be honest with yourself. When your twitching started, who did you more resemble, the first patient or the second? I was for sure the second. Have you also noticed that most that say they had twitching but it went away also say that they just stopped thinking about it?
It took me months (almost a year) to accept my symptoms were being sustained by worry, stress, and anxiety. For a good while I was getting frustrated because I thought I was accepting but now I know I wasn't. When my muscles would fire up I would still react and think about it. I still had my doubts also. It took me months of counseling with the lady I mentioned above. She was a lifesaver and I feel I owe my life to those guys. Her husband (Jim) was aweome too. It was always reassuring talking to someone that had been there. He had all of this and then some for 12 years. My life was hell for 1 year, I can't even imagine having this for 12. One thing is for sure, unless you have had this you can't understand this. That is what makes those guys so helpful.
What I have learned from them is how our nervous system works. I won't go into much more detail but one thing that helped me was know that the nervous system has a setting or a memory. When we start stressing it by worry and concern or any other form of stress, it starts operating at a higher level than normal (this is when symptoms start occuring). When we keep up this pattern it goes to it's highest level and the body perceives that this is now normal (normally when we are here we can have all sorts of problems, problems sleeping, pain in joints, back aches, head aches, severe muscle twitching, cramps, tons more, etc.). Once it is there is stays that way until we take action to bring it back down. This is where the work comes in because it normally doesn't do it by itself. Besides changing behaviors, diet comes into play also.
Today, I have very little muscle twitching. The first thing that faded after I stopped the worry cycle was the cramps, burning, and pain. The twitching started decreasing a little while after that. I now will get a minor jump here but rarely anything I would call a twitch. All my other symptoms are gone except some lingering sleep issues. I understand that it can take up to 2 years for the body to return to normal if you were really overstimulated.
Another side story is that I visited my doctor a little while back for a check up. I told her all I had learned about anxiety and how it works on the body. She was impressed and told me that everything I have been taught was 100% accurate. I then asked her why she wanted to put me on anxiety meds when the real cure is stopping the worry cycle with knowledge of what's going on with our bodies. (BTW, anxiety meds are ok as a stop gap but should never be viewed as a cure and should not be used long term). She told me that most people want a quick fix and she doesn't have time to spend with patients explaining all of "that stuff". She did however ask for the website address and told me that she would refer patients there if they didn't want pills. I was kinda peaved that she was so quick to give me anxiety pills before but was now admitting that they can be dangerous and that the way I was curing myself was the only real way.
In conclusion I want to say this to everyone. I don't know what was the initial cause of most of your muscle twitching symptoms (could have been an illness, virus, over exercise, exhaustion, food allergy, depression, having a baby, problems in your life, etc., all of those things cause stress which kick starts this). I think mine was over exercise and general stress. However I think I have a good idea what is keeping most of you going, anxiety. Chances are your initial cause isn't what is keeping you going today. It's your worry and concern, and before you deny that I will say this, if you weren't worried or concerned about your symptoms you would not be on the internet reading about it or discussing it. Worry and concern IS anxiety. Anxiety in turn fuels symptoms of stress, which includes and in some cases only consist of muscle twitching.
The website I have been talking about is
http://www.anxietycentre.com . Believe me this is in no way an ad for those guys. I am for real and owe a lot of gratitude to them. I am posting this to help others that are suffering like I was. Here is a list of common anxiety symptoms
http://www.anxietycentre.com/anxiety-symptoms.shtml . Do yourself a favor and head on over there and see if you can relate. I hope some of you can, because if you can you will be able to get over this thing.