Re: Coping strategies

Information about how to manage or reduce the severity of BFS symptoms

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Coping strategies

Postby lyann on September 6th, 2013, 8:25 pm

I have BFS for about a year now. At first like everyone else, I was so afraid. I read that fasciculation is a symptom of *** (the three letters words that everybody knows about). I had a EMG done, nothing, not even a fasciculation came out. The neurologist who’s did mine also suffer from BFS, so even if they doesn’t show up, he believed me. At that point I wasn’t sure what it was. The neurologist didn’t feel it was important to make the correct diagnostic because it wasn’t something life threatening. I my case the fasciculations started in my feet. I thought at first that it may be restless leg syndrome. It has the same symptom. I was always trying to move my feet because of weird sensation, like electricity in my feet and it prevent me from sleeping. My toes would curl up. I was referred to a neurologist specialised in sleep disorder. He was very nice to me. He prescribes me Lyrica (pregabalin). At this point, I stated to get my life back. I was able to listen to the tv at night and sleep properly. It was life changing for me. In parallel, I was also doing CBT to lower my anxiety level. I’m still doing it. It helps very much. I always suffer from anxiety as long as I can remember. My parents were anxious themselves. My dad in particular was always telling me to be careful. I grew up being afraid of everything. My anxiety wasn’t a problem until I started to develop BFS. Before, I had sleeping problem but that it. I never thought about going in therapy. But with BFS, you start to realise how much you are anxious. If there is one thing I can be grateful for it 's this, the twitches help you realise it’s time to stop. Other time, I’m getting very frustrated not being able to push myself as much as I want (working long hour, etc.).

So, for the short time I have this condition I want to share my strategies to cope with it. First, the thing that work for me the most it’s a relaxation technique called: cardiac coherence. It’s very simple. You just inhale for 5 sec and exhale for 5 sec. You do this 5 min each time, 3 time a day and that it. It helps adjust for sympathetic system. I also find that light exercise and bath help. Getting appropriate amount of sleep is of course crucial.

I also would like to share my symptom with you. At the beginning it’s started in the arch of my foot. It was like an electric shock that would curl up my toes, very freaky. I had also pin and needle sensation. Sometime it’s would just hit me like I been stab with a needle. The pain would stay just for one second and go. Really weird. I have also some time a spot where it stated to vibrate. I had those in my foot and finger. Recently I had a big twitch next to my knee that could move my whole leg. This week, it’s started in my eye lid. Not enough to close it. It’s just tickle constantly (I'am exagereting, let just say several hour a day). I started to get very annoyed you this one. You started to get use to a twitch and it changed and you have to start again. I don’t know if I’m the only one, but I started to focus on it and I can concentrate on anything else. Sometime, it’s on my mind whatever I do. It’s very hard for me to ignore it. I hope I could one day. When I talk to my father about that he said he had the same thing as me. He never told me about it before because it doesn’t bother him. My grandmother also has the same thing on her feet. They both have this for so much time, it just part of their life, like breathing and blinking. I hope it can work like that for me one day. In the meantime, it’s very difficult to live with this condition someday. I feel like people around me don’t understand what I go throw. They get one twitch on the eyelid one night and think that it. Yeah me to, if this happen to me once in a while, It's would be great! But no, it’s every day. Someday better that other, but there always something for reminding you you have this condition. I wish I never had this… I need some support from people who gone through what I did. I need to know that will get better at some point.
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Re: Coping strategies

Postby SecretAgentMan on September 6th, 2013, 10:01 pm


Thank you for sharing your coping strategy and your story. I think it is important and noteworthy to mention that along with the breathing pattern you mentioned that the breathing is most effective when you use your diaphragm rather than chest. When I was learning relaxation techniques and meditation my chiropractor/acupuncturist/mentor taught me a Chi Gong breathing technique where you are supposed to expand your stomach when you breath and your chest is supposed to stay stationary. I was habitually breathing with my chest all the time and it took a concentrated effort on my part over a week or two in order to change. Now I breathe with my diaphragm habitually and don't even think about it. I feel much more relaxed all the time and can reach calmer and deeper states in my meditations. If you have not already done so, I'd recommend integrating this into your technique and everyday life as well.

Regarding your foot sensations... I'd recommend going to see a chiropractor/acupuncturist if you can find one that does both. I realize every doctor is different but those two skill sets in a doctor are what I attribute a great deal of my reversal of fortune to. Everything in nature happens for a reason. If you can find a doctor who utilizes techniques and has a skill set that allows them to figure out the root cause to your problem and address it, you can heal and overcome that problem. The big question is though, what is that right technique or that right skill set? I can tell you that it most likely does not reside in western medicine. They are very good at slicing and dicing, but are very poor at treating chronic illness. Their prescription pad will only give you things to mask symptoms, not correct imbalances or fix anything. Chiropractic medicine is very effective at correcting misalignment, relieving pinched nerves, and even treating and reducing inflammation.

Acupuncture/acupressure is very effective at addressing energetic and emotional imbalances, which I believe are primary drivers for the manifestation of much physical illness and dysfunction. Many people think this energy is a nebulous concept and it eludes many. In reality I think it is one of the most familiar things to us which is why it eludes us so easily. Because it is always with us and always a part of us, we don't recognize it. It is that part of us that allows us to know the feeling of being stared at from across a crowded room. It is the part of us that recognizes the feeling when you walk into a room where people have been fighting but you saw and heard no physical evidence of it. It is the part of us that knows who's calling us before we look at the caller ID. I believe everything is energy and energy is everything. Modern technology can only just now indirectly measure and detect the acupuncture system of a human being, but it was discovered, developed, and used by the Chinese thousands of years ago just based on being able to 'feel' the energy. Today modern doctors scoff at such ideas, yet acupuncture is taught at some of the most highly acclaimed medical schools in the world. Even the military studied, trialed, and is now successfully using acupuncture.

In my experience with it, I have learned to not underestimate the power and the magnitude to which this energy not only impacts but drives every aspect of our very existence. We look out at the world and expect randomness, but when we examine the major events in our lives at a closer level we often find amazing coincidence after amazing coincidence that just happened to bring us to where we are today. From our limited perspectives some of these coincidences are good and some are bad, but all of them have valuable lessons buried in them that we've either chosen to learn from or not. Regardless they were important in shaping who we have become. The lessons we learn the easiest seem to be the ones where we listened to that little voice inside ourselves that knew what we needed to do. The hardest lessons are the ones were we ignored that voice. BFS was one of those hard lessons for me.

Looking back on it now I'm actually grateful for BFS... Yep, I just said that. It was hell living through it, but I am who I am today because of that negative emotional and physical experience that I turned into a positive learning experience. I am a completely different person than I was before I developed it. I no longer have those horrible symptoms and I wouldn't wish them on anyone, but I learned from them. I don't expect many to understand this aspect, but I hope someday that you do. In my case I needed a multi-faceted approach to heal. I needed to make changes in my diet, my lifestyle, my attitude, my stress management, how I viewed the world, and how I related to the world. It was a transformative experience and it didn't happen overnight. Hang in there.
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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