Benign fasciculation syndrome (BFS)

@krfreitag I had a lot of various issues along with regions of tension, some variable twitching and sitting pain. For me, sometimes I'll start twitching somewhere if I sit too long. Sometimes not. However, I'm pretty sure some of the supplements I've listed below are helping cut nerve excitement down. I've posted many times here with the same message. Healthy fats and various supplements as well as stretching and exercise may help for things related to myofascial pain and / or neuropathy (and BFS might be a form of neuropathy with excited nerves causing twitches). Western Medical doctors don't generally know much about supplements - so they often don't mention them.

For the burning nerve pain often antidepressants are used. These same things at low dose might also calm the nerves and lower the fasiculations for you. Titrate up or down slowly on and off those (these are meant to be on for a time - not on and off from day to day). Often nortryptiline or cymbalta are used, but there are others, too. However, I was able to get off these meds in favor of the supplements mentioned, below. However, they might calm your nerves and lower the twitching if you stay on them for a while (btw Nortryptiline can actually cause twitching as a listed side effect!). Still, they might be worth a try.

While this post was originally for something else and it was long, it gives you a list of potential supplements to try. I did use those below and got off all prescription pain meds most of the time (and less tension / pain / twitches, etc.).

Short version: supplements can help relieve inflammation and nerve irritation along with stretching and exercise you can tolerate– the right ones – can also really help. There is also a "the protocol works and the protocol 525" for neuropathy. However, some of that involves insanely high levels of vitamins. I'd try what is in Fors' book and the lists I have, below, and see if those supplements help in the lowest possible doses. That is what worked for me. Last, you might want to check out Dr. Jonathan Kuttner's book "Life after pain". He discusses pain sensitization. Also, he discusses how people get stressed about these issues - but often the pain system (in your case the nerves causing twitches are activated). He has online courses and modules, too, that are affordable. You get stressed about it - but it is a malfuction of the nerves (pain system) - nothing that involves damage. However, you might be able to reverse or slow progression.

Here is a review I wrote of a book from Dr. Greg Fors. He discusses chronic myofascial pain - but even if you have neuropathy, better diet (and various supplements) and exercise might help. Sorry - this is a long post - but it is what WORKED for me:

Review of: Dr. Fors book. Why we hurt. How we heal, 2nd Edition, available on Amazon.
I've had some chronic myofascial pain in glutes and legs and I've found essentially the "cure" on my own. In the meanwhile I'd read other books such as "A headache in the pelvis". That book talks about the problem but doesn't specifically give you the cures (only some "cures"). However, Dr. Fors book is the go to book with practical tips and suggestions. His own story "case study" could practically have been my story with sitting pain and muscular tension. In his book Dr. Fors talks about oxidative stress on tissues, etc. For a person who's interested perhaps you could read it all. However, you can skip some and just go to the practical parts and use that information instead. I personally believe it is poorer circulation and poorer tissue remodeling as we age that causes these issues like myofascial tension and pain (including neuropathic pain). Apparently, I had some fibrosis / extra clotting going on as I got older (i.e. 58-ish). I believe the fibrosis in tissues / veins was causing poorer circulation and stiffness. While speculative, it may be deposits of fibrin (the blood clotting protein) that causes issues when deposited in veins, arteries and tissues and that tends to recruit cells of the immune system (granulocytes) and, hence, you also get "inflammation" (there is your low-grade autoimmunity tie in; these are my opinions; not something Dr. Fors mentioned). I believe this was true in my case. Supplements may alter and reduce this process. Read below for specific suggestions – many of which were mentioned in Dr. Fors book (I added 2 supplements to my regimen as a result of Dr. Fors' suggestions).
I do believe the supplements are the key to promote healing and proper tissue remodeling / regeneration which may go awry as we age and don't heal properly without the correct supplementation. Said differently, as you age you may need to supplement your diet with various plant substances and minerals, etc., for best health. His book is worth the price of that information alone which he details in a chapter on supplements / nutrition – but he doesn't mention adding a little hemp seed oil, etc. (I'm just writing this off the top of my head – there is a lot in this book – maybe he did mention healthy fats). As you take supplements, do check your blood pressure as these can vary it.

For me, proper supplementation (I added on a couple of Dr. Fors' suggestions, along with my stretching and exercise) have largely "cured" my tension and pain in the lower back and glutes, which included some pelvic floor tension, I believe. I have lower lumbar degenerative disc disease (which is most likely a “perpetuating factor” for myofascial pain) but all my pain comes from muscular tension and pain – which can be controlled without NSAID's and without antidepressants for me (although for a time, I did use some nortryptline for nerve pain). Honestly, if you cure your gut health (Dr. Fors has a whole chapter on that) and take the right supplements, your myofascial tension and pain (or it could be neuropathy) may go away on its own without needing to do a bunch of trigger point work (possibly; that is what happened to me – but he has a whole chapter on trigger point removal and has invented a tool you can buy separately for trigger point work – instead of using the usual balls and rollers for this). As one other reviewer said, until the root problem is cured the trigger points might simply come back – they did for me, too, at one time.

He has whole chapters about each topic. Especially, adding various supplements such as Flavinoids and flavolignins can really help you heal. Some of the supplements Dr. Fors mentioned such as ginger extract to calm digestion and Milk thistle extract (source of flavinoids) is one of many you can take (silymarin, the active ingredient in milk thistle extract, is a bunch of flavolignins, I believe; I also take diosmin / hesperidin and some quercetin (stay below total 500 mg or so daily); these are all flavinoids, I believe / resveratrol; ORAC energy greens (full of plant stuff and – you guessed it flavinoids) and extra vitamin C (staying below 2000 mg daily) and a tblsp of hemp seed oil, and turmeric. I also take rutin (vein health along with the diosmin/ hesperidin mentioned above) and turmeric daily. The only one that is really potentially toxic is quercetin. Do not take too much in supplement form and the ORAC energy greens has some in it already. People might also benefit from adding a source of SOLUBLE fiber with each meal (such as Heather's Tummy fiber) and Fors discusses gut health as super important and disorders often accompany chronic pain syndromes. He has a whole chapter on that.

The regimen I use along with stretching and exercise reversed or is cutting down on my sitting pain / neuropathic pain in the legs and glutes (i.e. less "sciatica") and reduced fibrosis in the muscles/veins, etc. I also supplemented with enzymes nattokinase / serrapeptidase and lumbrokinase, too, taken between meals to help with possible fibrin (or other amyloid type deposits) in veins / tissues. These are counter-indicated if you have clotting disorders or about 10% of people simply don't tolerate these in the gut. These have never bothered me and helped tremendously. Unfortunately, Dr. Fors did not mention those supplements that might reduce depositions of proteins in veins / tissues and are thought to be anti-inflammatory. However, these might still be considered “alternative medicine” in the west despite being used in Asia for years. Regardless, you might cure your issues with the right supplements alone, without those enzymes. I found milk thistle extract, recommended by Dr. Fors, was a good addition to the above substances as a source of flavinoids. Yes, cut down on added sugars, too, as Dr. Fors (and everyone else in the universe talks about). I had tried some of the other supplements he mentioned (like devils claw – but found it increased my blood pressure). Many others actually lowered my blood pressure!

Good luck, hope some of this helps. Rich

Thank you all for the nice replies, I appreciate it! I went to another Neurologist and he did not want to do an EMG or MRI. He did several physical tests and said my strength is normal and he did not see anything that would warrant further tests. He said it's benign so I have to live with it and hope it goes away eventually. Google makes it much worse as every article about fasciculations always points to ALS but then mentions caffeine, stress, lack of sleep, etc as other causes which is confusing to read.

I diagnosed myself with Parkinson's. I had constipation and went to a GI, he told me to take fiber.. It didn't help much, so I told my OMD I thought I had Parkinson's.Went to a neurologist and he confirmed it, Gave me NuPro and I have no motor symptoms. I think I had it at least 2 years before and now I have had it forn2 more years. The people here don't know I have Parkinson's until I tell them. .The foundation said I would probably die of something else before I got to the last stages. Raisins !/2 cup in hot water, soak 15 minutes eat as often as you need and drink plenty of fluid.

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?

@krfreitag
Hi and welcome to Connect. Firstly, please don't get into a headspace where you are thinking you are crazy. You are justifiably annoyed by this, and that is perfectly normal. I'd hold off on spending on further expensive consults with doctors for now. For one thing, the medical community does not know what causes it. Also, they seem to mostly recommend drugs to treat it. Not a great option for something that is not causing nerve pain and is not keeping one from leading a normal life, albeit a less pleasant one.

I understand why you feel anxious about this issue, especially the fact that you can have a twitch in one place for such a long time. I imagine mild BFS is common as I too have had twitches on occasion, but not often and not for more than a few minutes or a half hour at most. I remember one not long ago in the leg while I was in bed at night that went on for about a half hour. Mostly an annoyance in my case, nothing more. For you it's different obviously. I would recommend reading as much literature online and elsewhere as you can. If there is a treatment out there somewhere you are more likely to find it yourself than hear it from your average medical practitioner because the conventional wisdom is there is no cure. Also, involve yourself with others who have similar experiences with BFS such as people here on Connect. Look on the bright side: one thing to be grateful for is the absence of nerve pain w.r.t. this condition.

I hope this issue subsides for you. I do understand that it feels like it's driving you crazy at times. Hang in there, look for ways to calm yourself and for ways to take your mind of of the twitching if you can. One thing I just thought of: many people are doing MFR (myofascial release) these days for numerous health issues. Perhaps look into that (there is a discussion about it here on Connect). And do interact with people here, they are a good and knowledgeable bunch. Best, Hank