BFS Symptoms Prior to Onset of Twitching

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

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BFS Symptoms Prior to Onset of Twitching

Postby Carolmarie on December 26th, 2002, 6:38 pm

I am interested in how others started with their BFS. I started twitching the evening of 9/12/02. However, looking back, all summer I would have little sharp pains in the calves of my legs when I would go to bed and little, brief sharp pains in my head. I just dismissed them as "wierd spasms." In about mid-July, I began having dull headaches almost daily that didn't respond to Aleve or Advil. They weren't disabling--I would still go to work and carry on as normal, but the headaches stopped about the time I started twitching. Mine started in my calves just out of the blue one evening. My husband and I were watching TV and all of a sudden EVERY nerve in both calves started fluttering. Of course, I went through months of agony waiting for doctor appointments (my emergency wasn't their emergency), tests results, etc. What is so frustrating is a doctor who tells you that you are "worrying that something is wrong with you and you are bring on these symptoms by worrying.' Nothing infuriates more than that. I went for weeks on zero to 2 hrs sleep a night thinking I had MS or ALS. I was actually relieved when I found out about BFS. I finally found a neuro who gave it a name. It ain't no picnic but it sure beats the alternative! I am taking 50 mg. of amitriptyline--25 a.m. & 25 p.m. If nothing else, I get a good night's sleep each night. If you are well-rested, I think you can cope with about anything.[/u]
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Postby SusanSid on December 26th, 2002, 7:00 pm

Hi CarolMarie,

That's a good question as to how others started with BFS. I've had periods in the past where I had popping feelings in my legs after exercise, but never sat and watched my muscles so I never noticed the twitching. They would go away an their own. I did have one experience of twitches everywhere, work up for MS (this is about 10 years ago) and negative...the twitching stopped.
This go around is different. It started when I started intense exercise. I notice a tighting of arches of feet and thighs and had twitches here and there all over. Then I noticed the actual movement from the twitches and know the rest. The ALS scare about sent me into orbit.
Where I'm at now is that they are much much better (it's been a year), stress, lack of sleep, dehydration seems to aggrivate it. Also, exercise can do either...calm it down or make it worse. Stretching actually in the long run helps.
I'm doing the calcium, magnesium, B12 stuff....does it help?Who knows. My doctor did put me on .75 mg of Klonopin (which is a benzo, like ativan, xanax) but is different in that it has a very long half life (5 days vs. hours) where it stays in your body longer. Klonopin is also used for myoclonic seizures as well as restless leg syndrome...and anxiety. I have used xanax and it helps in those anxiety situations as it's fast acting. However, the Klonopin doesn't make me tired at all during the day (I take it at night) and it has helped me sleep like a baby and has REALLY helped with the amount of twitching and the intensity of them. My doctor said it helps calm the muscles. I think we're all different, some need meds and some don't. I think we all need to do what works best for us.
I stilll get the twitches, but they are less, but have to admit I stilll have some bad days. I think accepting this condition and not going nuts with fear is 3/4 of the battle.
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Postby Joanne on December 26th, 2002, 8:07 pm

Before my twitching started i do remember having sharp pains in my thighs...i would also get a wierd feeling in my forearms, almost like there was pressure in my arms.....hard to explain, but i remember then thinking this is wierd...i remember saying to my husband....I think something strange is going on with my nerves.....Boy was i ever right!!!!
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Postby SoJerseyMom on January 19th, 2003, 4:21 pm

CarolMarie, I too had a lot of symptoms before the twitching started. I started having numbness and tingling in my legs in June of 2001. Then cramping, mostly in the calf muscles. Like SusanSid, I had tests for MS, all negative. My twitches are only occasional and, like you, I get a lot of those little sharp pains that come and go. I still have more strange sensations than actual twitches.
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