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How I Cured my BFS (Benign Fasciculation Synd) within 1 Year

PostPosted: May 3rd, 2013, 5:00 pm
by BFSBurger
Updated Feb 7, 2017.

Elminating stimulants, gluten, stress, and other inflammatory causes should be the goal. Symptoms ranging from painful neuropathy in my leg, to muscle cramping, to severe fatigue, exercise intolerance, brain fog, and much much more. Of course twitching too. Everywhere. Thumpers that lasted hours and drove me (emotionally and mentally) insane. Inability to walk at times due to the pain in my left foot.

All bloodwork normal. Even the Celiac tests came back normal.

But my biggest sign that my gut / diet was a significant factor was that my symptoms would escalate slightly about an hour after eating a meal. But only certain meals. With certain foods in them. I strongly believe BFS is tied to autoimmunity that is directly agitated by gut disorders. And healing the Gut should be one of your most important goals. Difficult-to-digest foods and stimulants create an inflammatory environment in your gut, nerves, and whole body, which can lead to gut permeability, which can lead to autoimmune reactions as your body fights off these proteins that leak into your bloodstream. And as your body deals with the effects of stimulants like coffee, chocolate, and other caffeines.

BFS is an extremely agitated system that needs calming. It likely has ties to some form of autoimmunity. One that you literally don't have to worry about at all because its not going to hurt you.

So the goal with BFS is very simple: You need to calm your system. You do this by calming your nerves. Your gut. Your muscles. Your mind. And then you need to wait. You need to maintain this level of calm for months. Years. And over time, you will see improvement.

All these things relate to 'agitating' the system: Mental stress. Physical stress, from over exercising, or insufficient exercise to release tension and keep muscles slightly taxed. Gluten. Wheats. Caffeines. And again most importantly: Lack of exercise.

You must exercise. I can't stress this enough. Even if you have to use the pink dumbbells with grandma for awhile - you must begin a cyclical regimen of full-body muscle movement. I know that many BFS'ers say exercise is the worst thing ever. Symptoms get much worse after a workout. But that's the key. The single most influential way to calm your whole system, is to tire it. But you have to do it in a healthy way. There are a lot of BFS'ers pushing heavy weights and killing it on the treadmill, or biking/running like maniacs.

Stop it.

Proper exercise with BFS is calm, calculated, and extremely gradual. The goal here is to stretch things out, and exert every muscle group just a little. And inhale. Inhale deep. Get the oxygen into the brain, and into your lungs. This movement - this expansion and contracting - it calms. It loosens. It relaxes the body.

The exercise fatigue I had with BFS was massive, and I realized later this was because my immune system and CNS was on overdrive all the time. You have to calm it. Between full-body workouts with VERY light weight, listen to your body and rest as long as it takes to feel energy again. I had to wait 3-5 days between workouts, but you can not miss that next workout. If you do, you may begin to degrade again.

Without exercise, including walking and deep breathing to work out your lungs, you will not get better. I am convinced of that. If your lifestyle does not include careful, calculated, light, full-body exercise, and you do not change this, you can expect to have BFS forever. With or without gluten.

My first twitch happened on September 7, 2012. You can read through all my early posts and see all the symptoms and scares I went through. I am now 100% better, and I know exactly how I got here. I spent many months trying to get others on this website to listen to my advice, but 90% of them ignored and mocked me. And every one of them is still twitching, and dealing with miserable symptoms. You can lead a horse to water, but you can't make him drink.

Several of them would make comments like "I tried cutting out Gluten. Didn't work". But when you dig a little deeper, what they did was stop eating bread for a week. And didnt exercise carefully. And they were still chugging coffee. And 2 of the 7 days in that week they were buckled over with fear that they had a disease, and were Googling like maniacs.

That isnt a proper test. So anyone who claims "That dudes advice didnt work" - take it with a major grain of salt. Unless they did this whole regimen consistently for 6 to 12 months, I'm not interested in hearing their feedback. And whether or not you agree with, or even comprehend the Gut/Brain/Muscle/Nerve/Autoimmune connection does not matter. Its real. Elminate gluten, and begin exercising, eliminate stress, and then give it a solid 12 months to work.

Or do nothing. Your choice.

As for "How the hell do you not eat gluten? Its in everything!"

Chicken, Vegetables, Potatoes, and if you can tolerate it (dont get a reaction after eating it), white rice. Pick a new sauce every night of the week. Fruit and Kefir and Almond milk, Eggs and bacon. Salads and steaks. There are plenty of things you can eat. Just stop cold turkey with: Breads, Pastas, and Wheat products.

I'd also recommend getting a full hormone panel workup just to see if your levels are where they should be. Quite often they are not. But I would hold off on doing anything about it until you've been gluten-free for a few months. Stress gluten sensitivity and inflammatory autoimmune conditions can kill your hormone levels. Fix that first as much as you can, then test. A lot of people I've spoken to had major hormone imbalances and restoring balance helped a lot.


For fun, here's how I typically eat every day now.

1) Breakfast every day: 3 eggs cooked with Olive Oil. Bowl of Kefir Milk, organic blueberries, cantaloupe chunks, squirt a bunch of flax oil in, vanilla almond milk.
2) Vitamix blender: i throw a little of every color vegetable in, and drink it. Tastes like grass. But its incredible for your health.
3) Supplements Monday to Thursday: Ubiquinol 100mg CoQ10, 100mg Alpha Lipoic Acid, 100mg R-Lipoic Acid, 1000mg Fish Oil. Mondays I do a B Complex.
4) No supplements Friday through Sunday.

- two 8 oz glasses of Yellow Gatorade G2 daily. (only in the first few months - this helped incredibly with stopping twitching. try it and see.)
- A couple drinks of Tart Cherry Juice. (calms nervous system)

- Mon to Friday for the first 6 months I juiced organic vegetables (no fruits) daily with a "masticating" juicer. Now i use a vitamix so i can get the fiber with it.

Dinners: Chicken, potatoes, broccoli or some other veggie, and alfredo or tomato sauce (this eventually caused gerd for me so be careful). Avoid soy sauces as they contain gluten.

This video was integral to my new viewpoint:

I decided I was going to "do everything right" from waking until sleep.
Give my body everything it needs to flourish.
And pray that it would somehow result in healing.
This summarizes the entire regimen.

Focus hard on allowing no stressful thoughts, negative focus, or any tension or anger from any source. Remain calm every minute.

3-4 large glasses of water throughout the day.

7 ) Mid day workout: Whole Body - Light weight - every muscle group hitting each machine in the gym with 1 set. Goal: Just to get blood flowing. No major exertion.
8 ) Walk on treadmill and breathe deep in and out as deep as possible for duration of walk. When i started this - it actually hurt. My lungs were so inflamed from all the stressing and fatigue. But if you power through it, the next iteration of workout will be slightly better, and better. Usually only 5-10 minutes max, speed 2.5 ... incline 5.0. Very important not to overdo the workout.

You want to only do enough to feel stress release. Then rest for 2 full days minimum. Just listen to your body.

9) Dinner: Same as before (sorry). Skinless mashed potato. Chicken breast (all white meat). Frozen veggies. Cooked with Olive Oil.

The absence of food triggers that I believe enables the gut to heal, and the system to calm down.
This means a diet that is horribly bland for several months. It worked for me.
Any deviation from this - sugars, caffeines, etc brought symptoms back.

10) One hour before bed on Monday, Wednesday and Fridays: Dead Sea Salt bath. Hot water. Soak for 20-30 minutes. Up to chin. Bromine (bromide) is a CNS sedative, magnesium, potassium, etc.
11) Without exception, in bed as early as you possibly can. For me this meant in bed by 10pm without exceptions (i usually love to stay up until 11, 12, 1am).
12) If you wake up at 3am or 4am with your body and mind racing - a couple nights a week its okay to take NyQuil. I would usually drink 1/4 dose of it, give it an hour to kick in, and sleep like a baby. Those extra few hours (goal of 8 hours sleep minimum) make all the difference in calming your body and recovery. Do not allow yourself to go short on sleep. The exercise will also help you sleep longer, but if you wake up fatigued from the workout - you are doing too much.

Limit the NyQuil to only when you need it. Its like a magic potion for sleep however.

Calm, calculated, whole body exercise: Calms the system better than anything else
Eliminating all Stimulants: Stop drinking coffee. Seriously. If I see another BFSer brag about how they love their coffee Im going to scream...
Eliminating difficult to digest foods: Wheat / Gluten

Most of all: I have some good news for you: as the weeks roll by, and nothing gets worse - you can begin to rest assured in your overall health. I'm a rational person. I knew that my best friend was time passing. This whole fear of cancer and other diseases consumed me. But as I got to the 6 month mark, and then 1 year mark, I realized how irrational I was being. Take it from someone who has been there, and come out the other end. You're 100% fine. Its a total mind f*** for sure. Massive symptoms found only in major diseases - hitting you left and right. Its unbelievable! But after awhile I started laughing at it. "Oh ... BFS ... what are you going to do this week? What stupid new set of symptoms are you going to create for me, that will last 2 weeks then just mysteriously go away?" It became a game for me to see how it would evolve. Migrate around my body. And what it would do next.

Even after getting better I dealt with a lot of inflammatory reactions. As mentioned above, my incessant use of tomato sauces, and slow return to eating chocolate resulted in at least 5 months of severe GERD. My throat was inflamed, and I was put on Omeprazole (acid blocker) which made me 100 times worse. Everything is always centered around inflammation. And the solution was always to figure out what stupid *beep* i was doing in my lifestyle that was causing it. And stop.

With the 6 months of GERD misery? It was because I had stopped exercising. The inflammation-reducing effects of exercise are huge. It also calms autoimmunity significantly. So when i stop exercising (carefully), things tend to creep back.

My first twitch was September 17, 2012.

It is now Feb 7, 2017. I am back to living a 99% normal life. I might have a thumper once every 3 weeks for a total of three seconds. I must continue exercising (including my lungs) to keep my body stable, but if i do this, and ... always avoid gluten ... I am 100% back to normal.

What is BFS? After doing nothing but researching BFS for the last 12 months, almost daily, I have come to the following conclusions.
BFS is either:

1) A nervous system disorder due to long term self-induced stress, overtraining/over-exercise, over-exertion with insufficient rest. In reality these are all the same thing. Self-induced stress.
2) A disorder of the adrenal / pituitary system due to any of the above (which really is the same as #1). The end result of the above, is often HP Axis Dysfunction/adrenal fatigue.
3) An autoimmune disorder triggered possibly by chronic release of stress hormones, possibly latent viral infection, which responds quite well to dietary changes, and other lifestyle changes.
4) An inflammatory state of some kind heavily affecting the spine, resulting in immune activity / nerve / muscle agitation / misfiring.
5) A nervous system disorder due to a virus/bacteria/fungus as yet unidentifiable by medicine. I put the chances of this at about 10% max.

I had a new infection of CMV before this began. CMV incorporates itself into every muscle and tissue in your body, depending on how far you let it go before resolving it. I strongly believe there is some correlation to the new presence of CMV, but I could be completely wrong. Its a latent, dormant, often reactivating virus like most herpes viruses (Mono, CMV, Coxsackie, HSV1, HSV2, etc). You will see a ton of people talking about body-wide twitching on the herpes forums. And that's just caused by harmless-old herpes. Lots of really harmless things cause body-wide twitching.

One thing is for sure. At some point, something broke in us. Something broke in our ability to handle stress, and mitigate the fight/flight response. Something broke in our body's ability to turn the faucet off after stress has already come and gone. Most of us were just fine grinding our bodies and minds into the ground, and then one day: Click. Sh*t broke. Or you got an infection. Or you took a *beep* ton of antibiotics.

I managed to "manage" my BFS down to nothing. It took me about 7 months, and involved major lifestyle changes on every front. Diet was huge. And I can't stress this enough. There is something that triggers worsened symptoms in a lot of us here because of what we eat. I know the whole "Gluten" fad is joked about, but there is solid science backing the concept that Gluten and other Wheat Proteins can cause chronic, long term damage to the cell wall of your gut.

But this can happen from stress too. See its an interesting thing. You can create damage to your gut with stress, and then when you eat Gluten, symptoms of BFS can kick in. Its not that this is just "BFS is caused by Hamburger buns!". Lots of things can compromise the intestinal barrier. And then you can ingest something that never bothered you before and boom - symptoms. Because you're already damaged, and now you're introducing something thats "hard to digest". Does that make sense?

Once this barrier has been compromised between the waste in your gut and your bloodstream, an inflammatory response is started by your body. Your immune system will begin to attack these waste particles and proteins as foreign, and over time, this seems to cause a lot of our symptoms.

Likewise, 80% of the immune system resides in the gut. An inflammatory state in this location, whether it be mild irritable bowel syndrome, or simply eating the wrong foods, can and will agitate your immune system. When you wake up that beast, you will live to regret it. Therefore, for some reason we don't fully understand, eliminating breads, pastas, caffeines, chocolates, alcohol, and other difficult-to-digest foods creates an environment of healing for the gut, and a reduction of symptoms. I have confirmed this with a ton of people on here. Those who actually bothered to try it. And do it correctly. So this is my biggest recommendation.

If you have noticed any increase in symptoms at certain times of the day, or after eating meals - ever - this is a sign that your diet is a symptom trigger for you, and changing it will reduce your symptoms.

The treatment for my BFS was the same under all scenarios above:

1) Reduce and Eliminate minute-by-minute anxiety. Im talking about even that subdued kind that you have "gotten used to". It must be gone.
2) Reduce systemic inflammation/stress through dietary changes.
3) Reduce systemic inflammation/stress through mild, controlled exercise, and ample rest.


1) Reduce emotional and mental stress. Scratch that: ELIMINATE emotional and mental stress.
2) Avoidance of all inflammatory food intake including Glutens, Wheats, Breads, Pastas, Caffeines, Chocolates, and junk foods. This i can not stress enough. Stimulants of any kind need to be gone.
3) Learning how to exercise to the point of "relaxation". Not to the point of excess. Moderate weights. Your goal is not to be tired at the end, but to have flexed and moved your muscles. To have breathed deep for several minutes. Then you sit back and let the endorphins and anti-inflammatory chemicals saturate your whole body.

This is the goal. Not endurance. Not muscle gain. Not "excellence".

The logic: All three reduce levels of stress hormones, which seem to be haywire with BFS.

The regimen which brought me from full blown BFS to zero symptoms within 12 months of onset:

1) Supplements. Monday through Thursday. Off Friday-Sunday:

* Ubiquinol CoQ10 100mg ... =ubiquinol
* Alpha Lipoic Acid 100mg ... ywords=ALA
* R-Lipoic Acid 200mg ... ipoic+acid
* Fish Oil - Max DHA (two per day) ... ds=max+dha
* Vitamin B Complex without B6 (only on Mondays) ... how_detail

Explanation: The above supplements are used in numerous studies for people dealing with mitochondrial inefficiency. Cellular energy problems. And countless other functions in the body. This hits BFS because it helps provide more energy on a cellular level, helping the body restore and function at its most basic level, across all internal organs and in the brain. The fatigue, exercise intolerance, and other aspects of BFS lead me to this supplement regimen. I did this only Monday through Thursday, and took Friday Saturday and Sunday off to give my body a break, and avoid tolerance. Again: No supplements of any kind Friday Saturday and Sunday.

2) Dietary Additions

* 365 Organic Extra Virgin Olive Oil - began cooking with it, or took two tablespoons daily (for nerves and brain)
* Two teaspoons of Cold pressed Coconut Oil (for nerves and brain)
* One glass Tart Cherry Juice daily (anti-inflammatory)
* Three glasses lemon Gatorade daily (sodium and potassium for proper small-fiber muscle firing) - this I did for several months and saw near immediate reduction in twitching. Many here report results with Gatorade. It's safe to do daily for 6 months, and then ween yourself off it slowly. Best to do after a workout to replenish sugars at the right time, instead of just drinking it "whenever".
* One cup Chamomile Tea daily (anti-inflammatory / sedative)
* Two tablespoons Flax Oil daily (for nerves and brain)
* 1 cup Kefir Milk daily (for gut flora / probiotic / healing intestinal permeability)
* Juiced Organic Vegetables: Celery, Broccoli, Carrots, Apple, Shard Leaves (2-3x per week - 2 cups)
* Bone Broth (the legit, real, straight from animal bones type) soup 3-5 times a week. sells it.

Explanation: Simply put? Influx of healthy fats to optimize nerve and brain function and improve good Cholesterol. Necessary for creation of Myelin around nerves (Flax, Olive, Coconut oils). Probiotics to improve gut health (Kefir Milk), Bone Broth has been proven to heal gut permeability and reduce gut inflammation. Tart Cherry Juice and Chamomile Tea both shown to have nervous system sedating effects. The Gatorade was paramount. I can't stress it enough. For whatever reason, Gatorade 3x a day singlehandedly reduced my twitching immediately. I don't know if its the electrolyte/sodium/potassium influx helping calm the misfiring of muscle fibers, or some other mechanism, but I drank Gatorade daily for months, and it was a huge part of my recovery. Juicing vegetables was also huge, but on a general health level. I rarely ate veggies prior. I was now practically injecting pure organic vegetable nutrients into my body 2-3x a week. And my body flourished because of it.

3) Lifestyle Modifications

* 2 cups Dead Sea Salt Baths 2-3x a week (Contains Bromine: Sedative / Anti inflammatory. Topical absorption of Magnesium and other muscle / nerve calming agents).
* Mild - whole body - resistance or weight training (the most potent anti inflammatory you can possibly partake in: mild exercise)
One set, minimal weight. (2-3x per week, ample rest between)
Treadmill walking 5-10 minutes only. Incline 5.0 speed 3.0. (2-3x per week, ample rest between) Deep breathing. (oxygenates organs and brain, releases massive amounts of stress, sedative effect).
* Sleep. Sleep. And more Sleep. In bed every single day by 10:30 for a minimum / average of 8-9 hours of sleep daily. (huge stress relief tool, body calming, strengthening)
* Finding ways to eliminate health fears. (single most influential cause of increased BFS severity)

Explanation: Dead Sea salt contains ingredients which are shown to sedate the nervous system. These were huge for me, especially when I had my worst fatigue, exercise intolerance, and muscle aching. I can not recommend them enough. Exercise used to be about killing it at the gym, and it became instead about flexing and exerting every single muscle group in my body at least once, instead. One set .. every muscle group. Just to get the blood flowing into it. Keep the joints moving. Keep the muscles flexible. Whole body. Minimal weight. I also began "exercising" my internal organs and oxygenating my brain. 5 to 10 minutes on the treadmill (only as much as I could tolerate) .. the whole time breathing very deeply and exhaling. Saturating my system with movement, oxygen, and bloodflow. Then I would collapse on my bed and be knocked out for 2-3 days with fatigue. Only do as much as you can tolerate. Then rest. Rest. Rest. Lastly, none of this will amount to a hill of beans unless you eliminate health fears and emotional anxiety.




Re: Update

PostPosted: May 3rd, 2013, 5:14 pm
by wimpy39jen
It is interesting what you talk about with the B vitamins. I really noticed my twitching issues when I started taking a B complex for my Trigeminal Neuralgia back in December. I have been taking lots of B vitamins thinking it would help, but it sounds like from your experience it does not and aggravates the twitching. Also, where can I buy some of the dead sea salts? I am very interested in trying that to see if it can help me. Thanks so much for posting this to help others. I totally agree with you about the Gatorade too! On days when I do not drink one I notice the twitching is much worse!

Re: Update

PostPosted: May 3rd, 2013, 9:01 pm
by SecretAgentMan
It makes a world of a difference if your vitamins are synthetic or natural. The pills you buy at Wallgreens are 99% synthetic. If you get them straight from the vegetable or fruit themselves you're far better off. There are sources of encapsulated vitamins from sources like Standard Process, but even with those you have to be careful.

Re: Update

PostPosted: May 5th, 2013, 6:29 pm
by BFSBurger
B complex is important for your health. The problem is just the B6. Google Vitamin B6 toxicity twitching. You'll see what I mean. I had been taking the Whole Foods brand Multivitamin daily for years, and it has something like 3,000% recommended daily dose of B6. It is well established that b6 becomes toxic to nerves at higher doses, and the type of vitamin, in this case, does not make a difference. The only safe way to ingest b6 is through foods. Google: b complex without b6 and you'll see a product I just discovered today that lets you get your b complex without the b6. Very glad I found this as we do absolutely need B vitamins.

As for dead sea salts - just go ahead and google it. I was worried about authenticity so I get mine from Adovia I think its called. Adovia Dead Sea Salts.

As for gatorade - its crazy isnt it? Its very fast acting for me. And back when my twitching was constant, I could literally tell when the Gatorade wore off. Thankfully one 12oz glass lasted me almost perfectly up till lunch, and then till dinner. More evidence that we have a potassium channel disorder, as Gatorade really only contains Potassium and Sodium. I have yet to figure out why bananas don't help me however. They do contain a ton of b6 so ... who knows. Maybe it counteracts the benefit.


Re: Update

PostPosted: May 6th, 2013, 3:09 am
by TwitchyDoc
Actually for the celiac disease, ie. autoimmune reaction to gluten, has been proven recently to cause neurological disorderds, there is even a case of full-blown ALS mimic which turned out to be a celiac and the guy recovered completely.

So I definitely agree that food could be the factor and I will try Gatorade finally :)

Re: Update

PostPosted: May 6th, 2013, 5:20 am
by fargo
excellent post BFSBURGER, as usual :)
keep them coming please..
my only suggestion is to place it in the 'symptom management' section where it clearly belongs :)

Re: Update

PostPosted: May 6th, 2013, 1:20 pm
by dARR
Some awesome tips here for reducing symptoms.

Just like to add that if these dont work for you dont worry... I have had this for three years and have tried everything and nothing has ever reduced or helped my twitching (i make a slight exception here for vitamin E)...nevertheless... Eating healthier and excercising will make you feel so much better so you have nothing to lose!

Re: Update

PostPosted: May 6th, 2013, 3:29 pm
by garym
BFSBurger wrote:
I am convinced at this stage that what we have is a Potassium Channel Disorder, and there isn't a person alive who will convince me otherwise.

I'm not certain if it's potassium or sodium but I firmly believe it is a intracellular imbalance of one of the two.....either way, 10 years in, i'm not worrying about it much any more.

That said, good post over all. FYI, avoiding stimulants like caffeine and aspartame did nothing to improve my sxs but we are all different and what works for one may not for others. I'm just glad you are getting some relief.

Take care,

Re: Update

PostPosted: May 6th, 2013, 5:28 pm
by Aviationrocks1
dARR wrote:Some awesome tips here for reducing symptoms.

Just like to add that if these dont work for you dont worry... I have had this for three years and have tried everything and nothing has ever reduced or helped my twitching (i make a slight exception here for vitamin E)...nevertheless... Eating healthier and excercising will make you feel so much better so you have nothing to lose!

Well said. I don't think not exercising in the hopes of reducing the twitching is the answer. The twitches are benign, so have at it. There are so many benefits of exercise!

Re: Update

PostPosted: May 6th, 2013, 5:55 pm
by BFSBurger
Hey Gary - should we move this to symptom management like the fellow suggested above? I don't want to double post. Sorry about the misplacement. Unforgivable for a fellow discussion forum owner !! :oops:

Actually for the celiac disease, ie. autoimmune reaction to gluten, has been proven recently to cause neurological disorderds, there is even a case of full-blown ALS mimic which turned out to be a celiac and the guy recovered completely. So I definitely agree that food could be the factor and I will try Gatorade finally :)

Food is huge. Really ... really huge. I don't understand fully why, but my body acts like it has Celiac. And Aztwitchy and I have been mulling over this for weeks now. I literally stick to meat n potatos n gatorade n veggies daily. In the beginning, if I deviated from the Paleo Diet + Potatos, I would have instant symptom problems. My foot would begin to burn, calf would ache, twitching would increase, nerve jolts, etc. I've been on the diet for a few months now, and am able to have cheat meals. So something is changing. Improving, overall. Even with celiac, they say the treatment diet only needs to last 6 months, and often people can begin to go back to eating like they used to. However I will never go back. This food is the most clean, healthy food i've ever fed to my body. In the beginning I could not tolerate beef. So I stuck with chicken as the only meat, with various tasty sauces. If i didn't have twitching, Celiac would be the self-diagnosis for sure. Given that fact, I've treated myself like a celiac patient and it has worked. What I eat is now the biggest factor in symptom management.


Re: Update

PostPosted: May 7th, 2013, 3:20 am
by lcanela
There is something you did not mention and I really think it is really important.

Pro Biotics.. as you already have said many times, auto-immune stuff are closely tied to the bowels.

I can tell I have stopped Every single supplement and taking only strong amount of very good (expensive) pro biotics (Over 50 billion dose) and I have what they call a die off, and then my BFS has improved a lot.

I used to have a terrible hotspot in my right triceps once a week for about 24 hours each time and after I changed my posture to sleep I haven’t had it for over 3 months now... so no more hot spots at all, only a few mild twitches a day.

I think hotspots are caused not only for the hyper excitability of our nerves but also because of physical triggers, like postures we take while working and / or sleeping (last one is very important).

Apart from that I barely come to this site... I only come from time to time to check if the cure or cause has been found.

I am almost back to normal after not having any Hotspots, so I am happy...

Cheers guys!

Re: Update

PostPosted: May 7th, 2013, 10:01 am
by garym
BFSBurger wrote:Hey Gary - should we move this to symptom management like the fellow suggested above? I don't want to double post. Sorry about the misplacement. Unforgivable for a fellow discussion forum owner !! :oops:

I think it'll be ok..... :wink:

Re: Update

PostPosted: May 7th, 2013, 11:27 am
by SecretAgentMan
I LOVE the discussion going on here. This parallels the experience I had with my symptoms as well. I noticed that a strict diet of meats, veggies, potatoes, and fruits helped me greatly as well. Certain veggies, like nightshades (eggplant was one) seemed to act as triggers too, so I just listened to my body if I ate something that caused an uptick in symptoms. Coconut and coconut oils were bad too for some reason. The more I refined my diet, the better I felt for longer periods of time. The probiotics were an important thing for me too and greatly helped me build up my tolerance of foods that didn't agree with me. You guys are validating everything I experienced.

I'll take things a step further based on the experience that I had and how I eventually overcame this. I went to an alternative medicine doctor who was experienced in digestive health issues who explained Leaky Gut Syndrome to me and treated me for it. It involved staying on the diet that BFS Burger is already describing AND it involved pro-biotics like Icanela is describing. So you guys are already doing what you need to do. I can offer some additional info I learned the hard way that may further help you. Whether you believe in or agree with the potential of LGS is irrelevant. Just consider looking into these additional things that helped me. Since my experience seemed to parallel yours it might be worth your while.

First off is your water. Avoid consuming tap water or things labeled as 'drinking water' in the store (esp. water supplied by nestle). Most tap water and bottled drinking waters contain chemicals and well, I'll just say 'crap' that is inflammatory to your intestinal tract, thus contributing to the conditions that qualify for LGS. Your digestive tract is a major line of defense for invading foreign bodies entering your blood stream. In LGS essentially your intestinal tract lets things through that would normally be blocked. Complex, hard to break down proteins such as gluten and dairy are common ones to make it through which is why they are so frequently targeted by the immune system as hostile invaders. Hello food sensitivity, intolerance, and even allergy! So many times it’s the stuff in your drinking water that is helping prolong the root of the problem.

So which water should you drink? Unfortunately even filtered tap water is bad. Filters really just supply a false sense of security. Filters don't capture anywhere near the amount of bad stuff from the water. Waste water treatment facilities spend millions in filtering and neutralization of contaminants. The problem is that the things that make it through their filtering process also make it through your filtering process. Reverse osmosis or distilling devoids the water of anything, which can be stress to your body for entirely different reasons. Distilled water will actually rob your body of nutrients because it is a vacuum. The best thing for you to drink is natural spring water. Natural spring water contains calcium and minerals and nutrients that are helpful to you. The Earth itself is a far better filter than anything man-made and it puts into the water the very minerals you need to stay healthy. I won't say all spring water is perfect, but you're far better off drinking it than any of the other type of water. Bottled water labeled ‘drinking water’ is usually reverse osmosis filtered with ‘minerals added for taste’. I don’t know what minerals they add for taste, but they are not healthy for you by any means. I have learned this from experience… If you value the advice of a veteran on the subject, just go with spring water.

The next big piece of advice I will offer you is to carefully evaluate your laundry detergents and other laundry additives. Along with LGS comes an immune system that is on high alert. It can be easy to get too focused on your foods and not realize the environmental factors, especially when they are in contact with your skin (the body’s largest organ) 24 hours a day, 7 days a week. When your immune system gets hyper-active to the chemicals you are ingesting, it also gets hyper-active to the chemicals you absorb into the blood stream through the skin. You know those nicotine patches? The reason they work is because the skin is the body’s largest organ and it is porous and it absorbs things that come into contact with it. This includes the chemicals in your laundry detergent, fabric softeners, and even dryer sheets.

Tide Free and Clear is a good detergent. 7th Generation makes a good one as well that you can buy at target. Fabric softener can be eliminated, trust me you don’t want what’s in it on your skin. Dryer sheets are a tough one but they are one of the worst offenders. A good natural alternative to dryer sheets that my wife found are ‘wooly balls’, which are basically balls made of wool and they are about tennis ball sized. You put them in the dryer with your wet clothes and let them go through the dry cycle. They can be used over and over again, so there’s no need to buy new ones. They do a pretty good job of keeping static to a minimum.

These 2 things are pretty big deals regarding managing BFS symptoms and staying healthy. I hope that this information helps. I know it’s rough to make yet even more changes to your lifestyle than you already have had to do with the diet, but it is worth it. Eventually when you’ve done some significant healing you may want to look into the acupuncture methods to help straighten out your immune systems and get rid of your improper immune responses to certain foods, but all in good time. Thanks and good luck!

Re: Update

PostPosted: May 29th, 2013, 7:51 am
by BFSBurger
SecretAgentMan wrote:I LOVE the discussion going on here. This parallels the experience I had with my symptoms as well. I noticed that a strict diet of meats, veggies, potatoes, and fruits helped me greatly as well. Certain veggies, like nightshades (eggplant was one) seemed to act as triggers too, so I just listened to my body if I ate something that caused an uptick in symptoms. Coconut and coconut oils were bad too for some reason. The more I refined my diet, the better I felt for longer periods of time. The probiotics were an important thing for me too and greatly helped me build up my tolerance of foods that didn't agree with me. You guys are validating everything I experienced.

Good. This has been my goal for the last 8 months. To finally find consistency with BFS. Something we can all agree on that controls symptoms. This is why i wasted my time researching and reading every day, as everyone told me to stop, because it would "just make things worse". Incorrect. Because when you find a trigger, that means you can avoid it, and voila ... not only do symptoms reduce, but so does your stress. Some people aren't able to tolerate Potatoes, but I found that the Paleo diet (meat and veggies) was *far* too carb free. I was weak, and twitching. It got to the point that I would have total remission of symptoms after a nice huge mashed potato with my meal, for at least a few hours.

I went to an alternative medicine doctor who was experienced in digestive health issues who explained Leaky Gut Syndrome to me and treated me for it. It involved staying on the diet that BFS Burger is already describing AND it involved pro-biotics like Icanela is describing. So you guys are already doing what you need to do.

Something beautiful about this technique, is that over time, your sensitivities decrease. For example, once I had nailed down the diet with NO EXCEPTIONS, and had stuck to it for several weeks, I was able to have the most disgusting, huge, hot fudge sundae known to mankind, complete with nuts and chocolate and cake. And I had no problems. Had I done this before several weeks of the regimen, I would have struggled with a painful, aching, burning leg and twitching like crazy. But it didn't happen this time. Some research revealed that even people with full blown Celiac disease can reverse it after 6 months to a year on a proper regimen.

Why? Because some element of this is intestinal damage from the immune system. Whatever we have, I am convinced, is an immune dysfunction. A roundabout effect of that dysfunction is the standard "gut issues" often characterized by damage to the small structures lining the intestines. An absence of "trigger" foods can relieve this ongoing immune effect on those structures, allowing them to heal. And does this work? Yes. I can't binge on anything just yet, but the longer I stick to the regimen, the more healing goes on, and the less reaction I get from trigger foods.

So for those of you who reject the possibility that food could be a trigger with BFS - just know there is some science behind this. Any immune dysfunction in the body can manifest itself in intestinal damage. This is common - for a wide spectrum of autoimmune disorders. In turn, foods which are inflammatory will trigger more immune response, gut problems, and therefore symptoms.

Don't fall into the trap of thinking we have a disease of the intestines. What we more likely have is a disorder of the immune system, and the food triggers are a roundabout effect of that. Just like stress is not our problem. Stress is something that *reveals* the immune dysfunction going on inside us.

Therefore avoiding trigger foods and avoiding stress, result in calming. Maybe after many months/years - total calm. And that is the goal.

I just know there are a bunch of people here who "poo-poo" the possibility that "changing your dryer sheets" could POSSIBLY do anything to help. But you're looking at this from the wrong angle. The Dryer Sheets / Food / Stress all agitate the dysfunction we have. Because everything causes reactions for people like us. And this is commonly seen on all the forums dealing with autoimmunity.

We are blessed in one major way: We likely have the most mild possible autoimmune dysfunction on earth. We may be the only people who can literally make lifestyle changes that will eventually calm the system "back to normal". Without prednisone.

Re: Update

PostPosted: May 29th, 2013, 12:00 pm
by chicagobfs
So today I had my third super painful emg done. It's been 4 years for me already. Many good days/ weeks and many bad days:/ . I asked the doctor that I saw today which was a neuromuscular specialist if food can affect my twitching and she said " I don't think so" basically she didn't know anything besides that my condition is bengin:) I'm not sure what to think and in what to believe. ImI afraid that there is no available help from western medicine...she told me to live with it :roll: