Living with BFS: One Year Journey

To all,

Now that I am closing in on 1 year experiencing BFS, I thought I would share my experience with these strange symptoms and how I am coping with them on a daily basis. The twitching began about a little over 10 months ago and started with a slight buzzing in my left leg proceeding to an all out frenzy of twitches all over my body within a couple of days. Like most of you I was completely freaked out and immediately made the mistake of trying to self diagnose myself through online medical web sites which of course led me to believe that I had the worst of the worst ahead of me. I then made an appointment with my doctor who told me that it was basically stress related and should subside within a couple of weeks. Of course that didn't happen. I spent weeks trying to understand why and what was happening but to no avail. The first month was the worst since my anxiety level was peaking and caused me to lose lots of sleep which seemed to intensify my twitching. I became desperate in trying to find someone or something which could lead me to believe that this would all go away shortly and I could move on with my life. Unfortunately, I began to realize that there was no ready solution to this problem nor a time frame of which I could rely on. In the interm I also tried all sorts of vitamins, dietary changes, lifestyle changes etc.., but at the end of each day nothing was changing. There were of course days where the twitching was more or less intense than the previous, and that gave me some degree of relief, but ultimately the only thing I wished is for this whole thing to go away, at least for a while anyway. After a number of months of dealing with these symptoms, I realized a few things that allowed me to make an attempt on moving on with life and not spending each moment of every day dwelling on this condition. First, I realized that the more active I was during the day, whether through work or recreation, the less I thought about my BFS since the symptoms don't normally occur unless you are completely still. While I have the occasional twitch on my upper body, the twitches in my legs, particularly the calves, are basically 24/7. When lying down at night, the twitches in my legs flare up but I have found that lying on your stomach when trying to sleep is the best position since there is less pressure on the back of the legs and the sensations are minimized. I have also found that when I'm lying on the couch but are distracted with the television or with my family, its as if the twitched did't occur since I didn't pay attention to them. So I started to spend less time focusing on the twitching and I would go longer periods of time without being aware that they are happening. As far as the twitching itself, I noticed that certain hot spots would last for days or weeks but would ultimately end at some point. That made me think that if those could end, so could the other constant twitches at some point. It's only a matter of time. The ultimate success that I have had in dealing with BFS is also getting into a mindset that 1) For many people the symptoms have come and gone. 2) There are endless amounts ;) of conditions that are much worse than BFS. 3) BFS symptoms affect you to the extent that you pay attention to them. 4) You eventually get used to them over time allowing you to focus on more important aspects of life. Ultimately, I feel that dealilng with BFS is more of a mental game than a physical one and once you get your mental state in order, you're 90% on your way to overcoming this unexplained condition. Its easier said than done but its helped me deal. Good luck to all you BFSers!!
 
Thanks Cindy for your feedback. I totally understand what you're going through. I used to go through phases of being depressed over this condition for many hours and sometimes even days when it first started. I couldn't believe it was actually happening. Especially since at the time I was just finishing my last semester in law school at night and couldn't wait to get my normal life back after 4 years of non stop work including my day job. When it happened it really got to me psychologically because I felt like it wasn't fair for this to come around at a time when I felt I deserved a break, mentally and physically. I really internalized the situation. But then I realized that so may many people are suffering in so many ways around the world that I was still lucky to otherwise be in perfect health. Now I still dwell on my BFS for very short periods of time, sometimes lasting a few minutes during the day and sometimes not thinking about it at all for a few days. I notice that I start to think more about it when something other than BFS is stressing me and my mind reverts back to the twitching. I still wonder sometimes how and why this happened but I still feel lucky and fortunate in many other ways. Life seems to maintain a balance in all aspects of nature by providing hardships and triumpths. All we can hope for is that our triumpths outweigh our hardships. I can tell you that this has changed me in many ways and I appreciate things in life that I never did before. I'm sure you feel the same way. I feel like my BFS will go away when it feels like the time is right. I can only tell you that I'd like it to go away soon, but not at a higher cost like a more serious life changing event or health condition. Sometimes things like this happen to us to protect us from something else. In the meantime I know that talking about this condition with people like yourself who REALLY understand what its all about helps very much. Talk soon
 
Hi Billy. Glad you are doing well. I am almost 3 years into this and I am trying to accept all of this. I've seen many people here wish they were years into this so that they can ease their mind a little. I just wish I would have had a dx of BFCS before this past Oct and I wish I would have found this site years ago, it would have saved me some worries.
Have a great day!
Amy
 
Hey Amy, sounds like at the three years you are a veteran of BFS. I hope you are coping better with each and every day. Its funny that no matter how long each of us deals with BFS, we still find ourselves fighting to deal with it on some level on a daily basis. Its definitely comforting to know that there are other people experiencing BFS. Strangely enough, I don't know anybody in my family or social circle who has dealt with BFS. For a while I felt like I was completely alone. Obviously I was mistaken. This site certainly provides a great deal of piece of mind. Take care!
 
Billy..thank you for your introspective and insightful posts. I can so identify with your experiences. I think it's just human that we have this element of "why me, why now?" Like you I was just going about my life when this thing hit. I'm not an incredibly anxious person and things were (are) generally good. After nearly 25 years of being a nurse in high stress critical care areas and then a nurse practitioner in a fast paced internal medicine office, I finally landed a job as a nursing professor...I LOVED it...little stress, weekends, holidays, and summers off, flexible schedule...I was psyched to sit back and enjoy the ride...great husband, great kids, all was well. Then I just woke up one day and my feet and calves had started this interminable twitching....the ensuing anxiety was excruciating...almost more than I felt I could bear...it robbed me of being able to enjoy all these good things...After seeking the appropriate medical care and having been reassured about this benign diagnosis I am in the process of making myself believe it and of taking my life back. I wish I had found this site sooner because I may have been able to put it behind me sooner. I'm telling you, I was a primary care provider for 8 years...I thought I had heard and seen it all ("I have a blue dot on my left tonsil" "When I wake up in the middle of the night I see animals dancing on the footboard of my bed"...No joke) BUT...I never had anyone come in with constantly twitching feet....I was so frightened and so alone....I am so thankful for this forum and for people like you who take the time to share their experiences!
 
Cindy, I also want to thank you for being open about your experience with BFS. What's interesting for me is that I overcame the fear of a more serious medical condition associated with my symptoms by the second month. The thing that bothered me after that was that I felt like the condition was taking away my ability to relax and be in a state of peaceful rest. I had fears that this would follow me later in life like a dark cloud and not allow me mentally to relax or move on. But like anything else I understood over time that this involves a mental healing process in which the twitching eventually becomes second nature. I wonder what we would think about the condition if we were actually born with it. We probably wouldn't spend a second thinking about it. Take for example the fact that we can feel our heart beat in our chests when resting or otherwise. We know its a normal bodily function and therefore it doesn't phase us. But if it weren't normal and it started to occur later in life, its possible that we would be equally upset about it as with BFS. The reason we don't pay attention to it is because its always been second nature to us. BFS of course is not second nature and causes distress until it becomes such a normal part of our day that we can just forget about it. I have faith that our brain is equiped with the ability to allow BFS symptoms to eventually become integrated with other things that we don't notice that happen to us constantly during the day. Take for example the people who have had BFS suddenly stop occuring. Most of them seem to indicate that they didn't even know it stopped for several days. This tells me that at some stage they got used to it. I think I'm getting very close to this stage. The thing is that it seems that stress typically causes my symptoms to increase so that just when I stop noticing them they pick up again. Since I'm 34 with a wife, baby daughter, and a career to think about, my stress level isn't going down anytime soon so I could be in for a long ride on the BFS express. Neverthless I have a nice family life so this really allows me to keep my head up. I really feel for the people who have to go through BFS during rough times at home or at work. It must be very difficult. Thanks again for the feedback, it always helps. Talk soon.
 

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