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Author Topic: POLL: BFS ... please respond. I would like to see how we all relate.  (Read 806 times)

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Offline Egg

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #15 on: March 31, 2014, 10:16:31 PM »
1. No.

2.  N/a

3.  About 14 months, off and on

4.  Yes, I like to run (two or three times per week) and also walk when I can, usually twice or three times per week in addition to running.

5.  When the fasciculations started, yes, I had been following a low-carb diet off and on for about 3 months.

6.  I have been taking Zoloft since last July, but I'm tapering off (almost done, actually) because it did nothing for my anxiety and definitely made my fasciculations worse.

7.  Had EMG, brain MRI without and with contrast, EEG, three rounds of blood work -- all thankfully negative.  My neurologist recommended that I really work hard on addressing my anxiety.

8.  No

9.  Have had fasciculations everywhere, but most often in fingers, legs, feet, face.  Occasionally arm, thigh, small muscles in knees.

10. I definitely notice a correlation between fasciculations and anxiety level.

My neurologist did caution me about not working out too hard, as he said that can make some of these physical symptoms worse.  I reassured him that I'm not a crazy exerciser.

If I had to guess, I would say that for years I had a subclinical anxiety disorder that I managed through exercise.  But for various reasons I had to stop exercising for about a year and a half, my anxiety ramped up over time (though I did not recognize exactly what was happening), and then I went through a significant period of stress (illness in family).  Pretty much as soon as that crisis passed, I started with the fasciculations, which catapulted me into a battle with HA that has lasted 14 months.  I'm feeling better lately, though.

My neurologist's advice notwithstanding, I find that exercise helps with both my anxiety and my physical symptoms.

Hi Everyone I am taking a little poll, then I will post the results based upon responses. It is in regard to benign fasciculation syndrome. I would like to hypothesize the cause of it amongst all of us, what makes it worse, and what helps to make it stop some. So here it goes:
1. Did BFS happen after infection and describe infection (norovirus, adenovirus, flu, lymes disease, gastroenteritis, etc).
2. How long after infection before symptoms occurred? Did you notice any weird rashes before it occurred, or acne type lesions like folliculitis on your spine or back?
3. How long have you had BFS for?
4. Are you athletic and how many days per week do you work out?
5. Are you on a high protein diet? Or do you consume more meat, vegetables, fruits vs bread and pasta?
6. Are you on any SSRIs or SSNIs/etc and what are they? (zoloft, buspar, xanax, prozac, etc).
7. Have you had brain MRI and EMG? Have you been tested for lymes? Everything negative? So now you are left with no advice on how to make it stop?
8. Any diagnosed co-existing health conditions?
9. What parts of your body fasciculate the most? Is it below the knees or elsewhere? How often is it, is it all day long?
10. When do you notice it is worse?

Just reply back with the number in front of it and your answer.
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Offline NytViolet

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #16 on: April 01, 2014, 12:10:13 AM »
1. Have had them 17 years, prviously dxd with EBV / ALSO NOW KNOW I HAVE FIBROMYALGIA
2. 6 YEARS
3. 17 YEARS
4. WHEN TGEY BEGAN WAS RUNNING 3  MILES DAILY AND TENNIS ON WEEKENDS
5. WAS ON THE ZONE / LEAN PROTEINS, GREENS, FEW SIMPLE CARBS, HAD DROPPED 45 LBS
6. WAS NOT WHEN IT BEGAN. NOW I TAKE ATIVAN
7. YES AND YES, ALL NEGATIVE.  RULED OUT MS. SLIGHTLY HYPERREFLEXIA, NO LYME
8. NO
9. DIFFERENT AREAS, FACE, FEET, SHOULDERS ETC
10. UNDER SEVERE STRESS ESP AT WORK AND WHEN I FIRST AWAKE IN THE A.M.

Just reply back with the number in front of it and your answer.
[/quote]
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God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Offline Angelofworry

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #17 on: April 01, 2014, 12:26:17 AM »
1. No diagnosed infection.
2. N/A
3. 21 months
4. Typically athletic - exercise 5-6 days per week. Been kind of slacking as I am 16 weeks pregnant and exhausted.
5. Was on a super high protein diet upon onset of BFS - I was doing atkins induction phase.
6. No meds
7. Only EMG - it was clean
8. Prior to this pregnancy my TSH level was 3.9. When I became pregnant it went up to 6 and diagnosed me with hypothyroidism and put me synthroid. Since then, my twitching has stopped. Except for flair ups when tired or stressed.
9. I twitch EVERYWHERE! My tongue is what started it all.
10. Diet soda used to really make it worse!
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Offline livelaughlove

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #18 on: April 01, 2014, 06:12:55 AM »
This is great! So far it seems this happens to people who are athletic and also people on low carb/more protein/probably higher phosphorus type diets.
I also wanted to mention I have Epstein barr titers (EBV). I had mono in high school. But like 90% of the world has EBV titers. Very common.
I went the magnesium route and had it checked twice and both times normal. I would not take magnesium without checking with a doctor first or better yet ask pharmacist. There are many different types of magnesium.
I too am weaning down off the zoloft and i feel great! I am on day 7 and no side effects of weaning down other than my mouth was dry for the first 3 days.
I have been on 50 mg for over 10 years. I am weaning down so slowly and plan to do it over 6 months. I do not care what others say, based upon personal experiences and by talking to others.... that IS how slow you need to wean down.
FIBROMYALGIA --- I do not believe in it. THat is a bullcrap term that is given to people when doctors can't figure out what is wrong with someone. I think they are probably suffering from some type connective tissue disorder secondary to some type of neurochemical disorder of the brain but science is not there yet... maybe it will be another 10 years before it gets close to even being there.
But yes fibromyalgia sufferers get fasciculations.
The low carb diets.... maybe some people are just not eating enough or not enough of the B vitamins, like niacin, riboflavin, thiamin... because these are added to pretty much all enriched wheat/white flour products which is everything including a lot of breads, boxed, processed foods.
I did do the paleo diet for a month. I tried a gluten free diet for a month. I tried a gluten free dairy free diet for a month. Then i just went on a very healthy whole food high fiber diet for about a year. I made all my food and ate nothing from a box or can. So I made everything from scratch. However, after a year of that is right around the time period when the fasciculations started. These days, I still eat very healthy, but more pastas and breads, unlike before.
This makes my twitching less. I have tried a couple days here and there of all vegetables, fruit, lean protein, and only some rice and my twitching is out of control. I do better by eating more carbs for some reason. All my vitamin levels are normal. But i guess my body just needs fuel as in whole grain fresh carbs. Very strange.
So it seems periods of extreme health and exercise is what brings on the fasciculations, and once they are turned on, they don't turn off.
Fasciculations are tiny contractions of the muscles. Let's keep this going and see if we can get more input from other users so we can collectively say which direction this is heading... but so far it seems that BFS happens to people who are health conscious type individuals that eat a healthy diet and exercise. Kind of ironic isn't it? lol
Like, why did you get BFS? Because I am TOOOO healthy!!! lol
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Offline livelaughlove

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #19 on: April 01, 2014, 06:17:06 AM »
By the way i also have hyperreflexia on neuro exam. Did you know hyperreflexia can be caused by zoloft? Also, in medical politics... they cannot order an MRI of your brain without a reason or the insurance company will not authorize it. So usually they say hyperreflexia so the insurance company will approve it. It's kind of crazy the politics of what doctors have to go through to get the dictating insurance companies to approve something. Quite maddening really. Insurance companies pretty much run everyone's course of health. Doctors hate it. That's why most of them retire early. You can't treat patients like how you would like. It's really bad.
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Offline Tnfarmgirl

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #20 on: April 01, 2014, 08:49:51 AM »
I have had BFs for over 12years..started as a little twitch in my thumb and within a week I was twitching everywhere..I would try to answer all your question but I am on my phone so it is hard to copy and paste the questions...I have had an EMG and MRI..both normal..Lyme was legative..some exercises but not daily..average balanced diet..I stil twitch, daily..but I really dont notice it anymore
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Offline beast216

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #21 on: April 01, 2014, 12:48:59 PM »
1. Did BFS happen after infection and describe infection (norovirus, adenovirus, flu, lymes disease, gastroenteritis, etc).
After a bout of Epstein Barr
2. How long after infection before symptoms occurred? Did you notice any weird rashes before it occurred, or acne type lesions like folliculitis on your spine or back?
No rash, acne, etc.  Symptoms began right away
3. How long have you had BFS for?
14 years
4. Are you athletic and how many days per week do you work out?
I was a college athlete.  This happened my senior year.  I now exercise once a week, but feel very achy (like when you have the flu) most of the time I do.
5. Are you on a high protein diet? Or do you consume more meat, vegetables, fruits vs bread and pasta?
Trying no Gluten
6. Are you on any SSRIs or SSNIs/etc and what are they? (zoloft, buspar, xanax, prozac, etc).
Yes, Lexapro
7. Have you had brain MRI and EMG? Have you been tested for lymes? Everything negative? So now you are left with no advice on how to make it stop?
No.  Never been tested.
8. Any diagnosed co-existing health conditions?
Nothing Diagnosed...although I think I have everything.
9. What parts of your body fasciculate the most? Is it below the knees or elsewhere? How often is it, is it all day long?
Biceps, Abs, Knees, Hands
10. When do you notice it is worse?
When I am nervous


I should add I have been trying yoga...and it is quite funny because in some poses my body quivers and shakes like a wet dog.  Like I said I have had this for 14 years and it is more of a pain in the butt than something debilitating.
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Offline livelaughlove

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #22 on: April 05, 2014, 07:05:11 AM »
Thanks everyone! I DEFINITELY think permanent fasciculations are brought on by exercise, but there are no studies to my knowledge in humans of this. Doctors, for the most part, are not putting 2 and 2 together that those that suffer from fasciculations... the fasciculations started during periods of heavy exercise.
So what causes the fasciculations? Likely it would be from cycling acetocholine throughout the body, because that cycles throughout everyone's body after exercise.
I have read an old study I found on rats and extreme exercise and acetocholine receptors, and guess what, extreme exercise permanently destroyed their acetocholine receptors. So they did not have any difference in quality of life, but if they were humans, I bet you they would have fasciculations.
Well I plan on going back to school within the next year and I want to go into research/microbiology/health/writing in some way...
So I will study this if so.
I have other studies going on just based upon answers from strangers.
That's what I do, I ask lots of questions, then look for any similarities, then tie it all together.
Nobody else is doing that so I might as well start it up!!!
So, BFS should not be something to fear. It should actually be looked at as a sign of being in good health, more than your average person that sits around all day and is a couch potato.
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Offline livelaughlove

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Re: POLL: BFS ... please respond. I would like to see how we all relate.
« Reply #23 on: April 05, 2014, 07:08:16 AM »
woops typo lol ^acetylcholine
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