Living with BFS Since 2000

[ZaphodBean]

Hi, this is my first post but I have spent a little time reading thru several threads here. I was first diagnosed with BFS back in 2000 or thereabouts. I was having all-over body fasciculations as well as mild tremors (mostly fingers). Long story short, after blood work (nothing revealing) and a negative emg, my neuro doc said I likely had BFS and sent me on my merry way. Over the years symptoms diminished so I forgot about it mostly and lived my life. Over the last month, I seemed to have had a flare and I went thru all the usual phases: freaking out, getting retested (more bloodwork and yet another emg) again mostly all normal, and still feeling perplexed about what the hell is going on....The doc has put me on nortriptyline but have only been on it for a few days. I have had chronic migraines for nearly 2 decades and my headaches are out of control plus I have had overwhelming fatigue. And not only do I have fasciculations but weird body cramps and a feeling of my muscles having locked up (mostly on my right side). I asked my doc if I still had PNH (peripheral nerve hyper excitability) in light of the negative emg...and if so, if it had likely morphed to cramping fasciculation syndrome. She just said to let her review all the tests and data. I was wondering the following:1. Has anyone here had BFS which later morphed into BCFS (benign cramping fasciculation syndrome, NOT chronic fatigue syndrome).2. Do most folks here have negative EMGs?3. How many here experience cramping with a sense of muscles locking up?4. Has anyone used a bar of soap in bed and had that work for them? (The neuro suggested trying that...I google searched it and sure enough it is a folk wisdom remedy that seems to have worked for some).Thanks in advance for any input or feedback!

 

[EmmyCee]

I was diagnosed with bfs in 2008. Like you, the symptoms subsided with time, aside from random small twitches that I easily ignored. About a year ago I too had a flare up with ratcheting, hotspots, and cramps on my feet and cramp like feelings on my feet and legs. 2 negative EMGs, low positive ANA. I too thought I had "graduated" from bfs to bcfs...luckily the cramping subsided, save for the occasional foot cramp, especially if I wear heels. Diet modification, supplements (magnesium, calcium, potassium) and Hylands homeopatic pills helped immensely. I also drank lots of Gatorade and pickle juice. For immediate relief, you might want to try the Hylands which has quinine I believe. I no longer get hotspots (knock on wood) unless I eat something I'm not supposed to such as gluten or chocolate.

 

[GamerSociety1509]

My understanding is that they are essentially the same disease but different names are used to differentiate how severe your symptoms are.Based on that understanding I'd say you could easy elevate from BFS to BCFS and also go back down to BFS from BCFS. Many people have said they used to get a lot of cramps.

 

[ChristinainWonderl]

KBFS1,I have been experiencing twitching since October of 2013 and it was about a month and a half after that when the cramping started. I've had two clean EMGs since then and am due for a return visit in September of this year if I am still twitching/ cramping at that time. Like you, my symptoms seem to be concentrated to one side of my body but I have twitched and cramped everywhere. Being as you experienced this years ago, it sounds as if you have a classic case of BFS/ BCFS. Is your cramping intense? Mine, for the most part, is a dull aching feeling. Somewhat like a bad bruise, but I have experienced increased pain at times. This condition is so difficult to deal with; it's always on my mind and I am so very tired of it. Be strong, you're not alone.ristinaL91

 

[duelikman]

Your symptoms sound exactly like mine. Was diagnosed with bfs with cramping. I've had twitches in my legs for 30 years. I now have non stop periodic twitching in left elbow and tricep. I then had a bout of severe twitching thumpers in my right tricep. Lasted 2 days. I then took 500 mg magnesium twice a day and the right side twthing subsided. Left side still going strong. Negative EMG. Neuro doc says it's not uncommon and they don't know reason. I have no other symptoms, just twitching. If I could only convince myself it is just bfs and nothing more, it would be soo much better. I know that. The stress and anxiety over this is worse than the twitching. Lots of neuro bs in my family so it's a worry for me. I will tell u what's been said to me. Don't sweat the small stuff. The anxiety is worse than the twitching. I also have tinnitus which comes and goes as well. I'd rather twitch.