Benign fasciculation syndrome (BFS)

Posted by captainanxiety8 @captainanxiety8, Mar 10, 2019

Not sure if this is the right place to ask this, but I'm really not sure how to interpret what's going on. I'm 40, have had random twitches now and then around my body for a few years and ignored them. Mentioned it to my Doctor last year during my annual routine health check and she said it's likely just stress and ignore it. Got sick a month ago, high fever, headache, dizziness, chills, and near constant twitching in different spots all over my body. My knees were going crazy and my biceps were twitching, I felt like my body was malfunctioning. I was also itching all over and my extremities were aching, especially in my feet and hands, but when I pressed or touched my feet or hands, there was no pain spot.

Two weeks after I got referred to a Neurologist who checked my strength, did not do any EMG or MRI, no other tests, just testing if I could physically push back or feel anything below my knees and past my elbows. He laughed and said I have benign muscular fasciculation syndrome and gave me some Xanax. I went for a second opinion and got the same diagnosis, benign muscular fasciculation, and was asked to return after a few months to check on me. The twitching is not as constant as before, but it's still happening, arms, lower and upper legs, knees, neck, shoulder, chest, they last a few seconds and stop. I can't sleep, the itching and the twitching wakes me up at night. The twitching does not go away when I move the muscle, it keeps twitching. Has anyone else ever had anything like this? If so, how or did it resolve?

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I have just joined this site share my story and experiences with (what I think is) BFS - Benign Fasciculation Syndrome. I have experienced constant facilitations (primarily in my my calves and lower legs) for almost 10 years now. I am a healthy 62 year old otherwise. Lately, I have experienced significant cramping in the calves and Achilles. I am getting more and more concerned. Truthfully, I have never been a "doctor" person, but it appears the condition seems to be worsening. Lately my lower legs hurt. The facilitations now are in my arms and hands - although no pain there. Anybody else with similar symptoms? Thank you.

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@ganggreen93

I have just joined this site share my story and experiences with (what I think is) BFS - Benign Fasciculation Syndrome. I have experienced constant facilitations (primarily in my my calves and lower legs) for almost 10 years now. I am a healthy 62 year old otherwise. Lately, I have experienced significant cramping in the calves and Achilles. I am getting more and more concerned. Truthfully, I have never been a "doctor" person, but it appears the condition seems to be worsening. Lately my lower legs hurt. The facilitations now are in my arms and hands - although no pain there. Anybody else with similar symptoms? Thank you.

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Welcome @ganggreen93, You mentioned having the symptoms for going on 10 years in your calves and lower legs but now it seems to be getting worse. @alawrie4935, @windyshores, @carlakay72 and @pathfinder2263 who may be able to share more about their experience with you.

Here is some information that lists some lifestyle changes that may be able to help some with the symptoms.
-- Benign fasciculation syndrome: What causes muscle fasciculations?:
https://www.medicalnewstoday.com/articles/320388

You mentioned not being a doctor type person but I would think being that the symptoms have worsened that you might want to see a doctor. Have you considered seeking help or getting a diagnosis?

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@johnbishop

Welcome @ganggreen93, You mentioned having the symptoms for going on 10 years in your calves and lower legs but now it seems to be getting worse. @alawrie4935, @windyshores, @carlakay72 and @pathfinder2263 who may be able to share more about their experience with you.

Here is some information that lists some lifestyle changes that may be able to help some with the symptoms.
-- Benign fasciculation syndrome: What causes muscle fasciculations?:
https://www.medicalnewstoday.com/articles/320388

You mentioned not being a doctor type person but I would think being that the symptoms have worsened that you might want to see a doctor. Have you considered seeking help or getting a diagnosis?

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Thank you, John.
Yes, I am now considering seeing a doctor for a diagnosis.
And thanks for the links and support... very informative.

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Hello everyone. I’m 46 years old. Had covid in April, stomach bug in June. A week later had hives and pretty sure dermatographia. I’m too proactive so I took Zyrtec. Then multivitamins then quertecin, mixing and matching meds and supplements. (Darn google) Noticed midweek that my hand muscle under the thumb twitched. Then moved to ankles, then knees, sometimes near my lip, under the arch of my foot, even my abs. This new symptom has made me abandon all meds/supplements. Do you think there’s a correlation? This is day 2 of no Zyrtec no quertecin. Tomorrow no multivitamins.
I am an anxious person but on my worst bouts nothing like this has even happened which leads me to believe there’s a correlation between the cocktail of oral intakes and my new twitching. It’s almost 3 am here. Haven’t slept a wink. Any info/ insight is greatly appreciated.

I start a new job on Monday to boot.

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@evie777

Hello everyone. I’m 46 years old. Had covid in April, stomach bug in June. A week later had hives and pretty sure dermatographia. I’m too proactive so I took Zyrtec. Then multivitamins then quertecin, mixing and matching meds and supplements. (Darn google) Noticed midweek that my hand muscle under the thumb twitched. Then moved to ankles, then knees, sometimes near my lip, under the arch of my foot, even my abs. This new symptom has made me abandon all meds/supplements. Do you think there’s a correlation? This is day 2 of no Zyrtec no quertecin. Tomorrow no multivitamins.
I am an anxious person but on my worst bouts nothing like this has even happened which leads me to believe there’s a correlation between the cocktail of oral intakes and my new twitching. It’s almost 3 am here. Haven’t slept a wink. Any info/ insight is greatly appreciated.

I start a new job on Monday to boot.

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Hi @evie777, Since you mentioned starting a new job on Monday, I wonder if it may be making you a bit more anxious than usual. I know I was always a little anxious when starting a new job. Here's some suggestions from the article I linked a few posts above yours.

"Because of the strong link that BFS has to stress and anxiety, it is important for people diagnosed with the condition to try to reduce their daily stress and anxiety.
A person can help reduce anxiety by:
-- meditating, practicing yoga, or listening to calming music
-- spending time with a pet, which has been shown to reduce stress, fear, and anxiety
-- eating a balanced diet rich in whole foods and nutrients
-- eating probiotics, which can be found in foods such as sauerkraut, kimchi, yogurt, miso, and kefir"

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@johnbishop

Hi @evie777, Since you mentioned starting a new job on Monday, I wonder if it may be making you a bit more anxious than usual. I know I was always a little anxious when starting a new job. Here's some suggestions from the article I linked a few posts above yours.

"Because of the strong link that BFS has to stress and anxiety, it is important for people diagnosed with the condition to try to reduce their daily stress and anxiety.
A person can help reduce anxiety by:
-- meditating, practicing yoga, or listening to calming music
-- spending time with a pet, which has been shown to reduce stress, fear, and anxiety
-- eating a balanced diet rich in whole foods and nutrients
-- eating probiotics, which can be found in foods such as sauerkraut, kimchi, yogurt, miso, and kefir"

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Thank you for replying, John. I really appreciate the thoughtful points you mentioned.

I realize that in addition to the Zyrtec/Quertecin/Multivitams triad, I was also trying the low histamine diet. I dropped weight pretty quickly on that, scared myself in the process and also abandoned it as of last Thursday during my dinnertime meal. I'm making sure I eat foods high in potassium and I'm feeling much better today. My hope is to crash this evening and get a great night's rest.

Thanks again for your feedback!

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@alawrie4935

I have had a similar thing happen to me and I’ve been scared. I’m having random twitching and jerking that is mainly my legs and at night but also happens if I’m sitting or driving in the car some. It started about 3 weeks ago and has eased up some but I’m still getting them. Every now and then a finger will also twitch or I will get and electrical type of feeling in a finger. Does anyone know what this could be? I’m 40 years old. A month before this I had Covid so not sure if it could be related. I was also taking lots of antacids due to being on a Verapamil for migraines but I am now not taking those medications I have really scared myself into thinking I have a scary neurological disorder or something else

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I have had BFS on and off for 17 years. It just started up non stop again about 9 months ago. My entire body is like a popcorn machine of twitches. Went back through the entire set of tests again from my doctors. Only thing that has come up is Peripheral Neuropathy in my feet. Trying to deal with the foot pain the best I can. Taking 300mg of Gabapentin and really not getting much from it. Try not to go down a rabbit hole mentally with this if you can. My Neurologist can't let find a cause of the Neuropathy.

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I am new to this group and have just been diagnosed with BFS; my symptoms started after my second Pfizer Covid vaccine and I think it may be related, does anyone also think this….
I have had all the tests done and have been prescribed by the neurologist Clonazepam 0,5 mg, does anyone have experience with this medication and if it helps.

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@miep

I am new to this group and have just been diagnosed with BFS; my symptoms started after my second Pfizer Covid vaccine and I think it may be related, does anyone also think this….
I have had all the tests done and have been prescribed by the neurologist Clonazepam 0,5 mg, does anyone have experience with this medication and if it helps.

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Welcome @miep, I'm sorry to hear that you had an adverse effect from the Pfizer vaccine. Hopefully members who have tried Clonazepam for BFS can share their experience with you. I did a search of Connect and only found one mention in this discussion by @captainanxiety8 here - https://connect.mayoclinic.org/comment/616427/. He shared another post on things that helped his BFS here - https://connect.mayoclinic.org/comment/312187/.

Here is some information I found on BFS that you might find helpful.

"Treatment for Fasciculations
Although some control of severe fasciculations can be achieved with beta-blockers and anti-seizure medications, no drug has ever been shown to alleviate the symptom consistently.

One of the most effective means of controlling BFS is relaxation and anxiety management. Anxiety has a cause-and-effect relationship with fasciculation; it can trigger an episode and aggravate its severity once it starts.

If anxiety is severe, it is best to seek help from a psychologist or psychiatrist who can provide stress-reduction training or prescribe anti-anxiety drugs if needed. Stimulants like caffeine should also be avoided."
-- Benign Fasciculation Syndrome: Causes and Treatment: https://www.verywellhealth.com/benign-fasciculation-syndromes-2488771

Did you report your adverse reaction to the COVID vaccine to VAERS ? - https://vaers.hhs.gov/reportevent.html

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@johnbishop

Welcome @miep, I'm sorry to hear that you had an adverse effect from the Pfizer vaccine. Hopefully members who have tried Clonazepam for BFS can share their experience with you. I did a search of Connect and only found one mention in this discussion by @captainanxiety8 here - https://connect.mayoclinic.org/comment/616427/. He shared another post on things that helped his BFS here - https://connect.mayoclinic.org/comment/312187/.

Here is some information I found on BFS that you might find helpful.

"Treatment for Fasciculations
Although some control of severe fasciculations can be achieved with beta-blockers and anti-seizure medications, no drug has ever been shown to alleviate the symptom consistently.

One of the most effective means of controlling BFS is relaxation and anxiety management. Anxiety has a cause-and-effect relationship with fasciculation; it can trigger an episode and aggravate its severity once it starts.

If anxiety is severe, it is best to seek help from a psychologist or psychiatrist who can provide stress-reduction training or prescribe anti-anxiety drugs if needed. Stimulants like caffeine should also be avoided."
-- Benign Fasciculation Syndrome: Causes and Treatment: https://www.verywellhealth.com/benign-fasciculation-syndromes-2488771

Did you report your adverse reaction to the COVID vaccine to VAERS ? - https://vaers.hhs.gov/reportevent.html

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Thank you for your response, much appreciated.
I did report my reaction to my government health link (I live in The Netherlands).

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