Benign fasciculation syndrome (BFS)

I'm so thankful for this thread . I hope you all continue to share your findings . My BFS started after a bad bacterial strep A infection that lead to sepsis shock . Around three months later I went through severe emotional stress and that's that's the twitches begun. Symptoms are worse when I am sick but the trouble is I'm getting sick all the time sometimes once a mo the sometimes twice a month . I do think there's a stress and sleep related aspect to mine. and I'm currently sick so this isn't helping much but when not sick what seems to help is telling myself I'm healthy , I'm safe and trying to think positively about the trauma that I believe led me to get this including the sepsis shock. When I start worrying about my health and my body my pains and twitches get worse. That's all the observations I have for now. I've cut out sugar and bread mostly and am trying meditation and breathing now. I will keep sharing whatever I find. My blood work shows positive anti nuclear antibodies speckled and my liver blood work its not looking good . I also have petechiae and kerastis pilaris

Welcome @jod12, Thank you for sharing your experience with BFS. I think you are right about stress making it worse and causing the symptoms. Here's some information I found that talks about the stress...

"Symptoms of BFS also appear to be a cause of stress and anxiety for people who have the condition. It is unclear if this stress and anxiety make symptoms worse, though many people report that it does. If stress does exacerbate the symptoms, then some people could find themselves in a cycle of BFS symptoms and anxiety." --- https://www.medicalnewstoday.com/articles/320388#symptoms

The article also mentions that meditation, yoga and listening to calming music may help reduce the stress or anxiety along with a few other tips. You mentioned being sick a lot and that is not helping. Have you seen a doctor about what may be causing you to be sick?

I have had Cramp Fasciculation Syndrome for 3 years. It started with a twitch in my left eye, which is now pretty much gone. It progresses to my left lower leg, calf and foot. My left tricep area is fully involved also. It is 24/ 7 and the muscle activity in my left leg causes my left foot to tremor which keeps me up most of the night. The other huge issue is the muscle cramping. Last night was horrendous. Inner thigh, top of foot, forearms, toes and fingers...horrible pain. I take klonipin, ropinirole, Baclofen...nothing works. If I could just find a medicine that helps....can't take it anymore. Ideas?

Has anyone else's calf BFS led to sensitivity to touch on those muscles? Also, has anyone else's calf BFS led to extreme pain when going up any sort of incline or stairs? The pain becomes overwhelming after several steps for me.

Just wanted to share - I seem to have this BFS also now about 8-9months. As I am falling asleep, and waking up, I have a 'shuddering' sensation in my right arm to my finger tips, worsened when the arm is bent at the elbow. I had it in both arms a few months ago but it then was just my right. I also have nerve pain and intermittent pins and needles in my right fingers, just some of them. My left foot feels sort of tickly weak, which is triggered by diet I am convinced. I also have face aching and tingling, which was like a trigeminal neuralgia for about 7 months of the 9. I have had an MRI, which was clear. It started two weeks after the astrazeneca vaccine last March, which gave me the other symptoms and a lot more besides, mostly numbness all over and shaking.
I have tried a lot of remedies for this as it worries me so much. I believe it is seizure activity, electrophysiological dysfunctioning. Interesting to read the post about sodium-potassium gate problems. Scary to learn that this is associated with MND.
I found the only thing that has stopped or greatly reduced the BFS has been B-complex vitamins close to bedtime. But of course the problem is it can cause insomnia, which made me need to stop.
The shaking/ vibrating when tired is also new for me, it only ever happened in the past when I was at the start of an infection like a flu (not for 10 years), or if I had been drinking the night before, as a result of a hangover. When I researched this a little more, I found a few papers that intimate GABA may be the cause of this when hungover. I wonder whether GABA supplementation could be of use here. A quote from one paper reads "The GABA-B receptor (GABAB-R1) colocalizes with sodium-activated potassium channels (SLO2.1) and voltage-sensitive sodium channels (NaV1.6)." My understanding of this is limited, I am not a medical scientist, but sense there is a close link.
The only other things I can offer by way of something to try are : Fasting, e.g. Filinova; and Hyperbaric Oxygen Therapy.
I will be trying all three over the next month and will provide update, if I can keep motivated ! This has all taken a massive toll on my finances, mental health, and life in general.
God Bless,
Dr M McMahon

Hi,
I have had nearly constant calve muscle twitching. I have been on high dose benzodiazepines for @ 30 year, from PTSD in the Navy. I down to .5mg x 2 a day. I was at 2mg x 2 a day for many years, down to 2mg x 2 a day.

I drink one cup of coffee in the morning.

I went to my VA doctor two days ago and said if I wanted to talk to a Podiatrist, and gave me a number. I didn’t see how a foot and ankle doctor was appropriate since I had no pain or twitching in those areas. I asked to see a neurologist, to be see if it was anything I that could be no concern or a concern. She said it was common, and that it was from veins pumping blood and arthritis, I don’t have in my feet and a small amount in my knee, that I walk on with no pain. I have noticed some weakness in my grip, mostly opening lids or pulling the top seal off of my medication bottles. My lower back is painful most of the time.
I insisted she ask a neurologist about my issue. One hour after I got home, a scheduler called and said I should have a EMG.
Has anyone been told the twitching was from arthritis or veins pumping blood in my leg?

Thank you,

Paul

Welcome Paul @pathfinder2263, I have arthritis along with a few other conditions and have had cramps in my calves but haven't had any muscle twitching. Most of the time the cramping symptoms for me are caused by not drinking enough water during the day. Here's some information you might find helpful on the topic.

"Why do my calves constantly twitch?
Leg twitching is a common symptom that is most often due to lifestyle factors, such as overexertion, dehydration, or overuse of stimulants. It usually gets better following appropriate lifestyle changes." --- What causes leg twitching? Symptoms and treatment - Medical News Today: https://www.medicalnewstoday.com/articles/leg-twitching

You mention that the the twitching is constant. Do you notice when you doing daily activities or is it mostly at night?