Updated Feb 7, 2017.Gluten containing foods were my biggest trigger for BFS. Stimulants were the second most influential. Elminating gluten gave me relief within a matter of weeks, after months of utter misery. 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 eliminating gluten from my diet even back then, cured me of 80% of my symptoms. But only 80%. The remaining 20% was a slow process that had many relapses. But at that stage it was just a thumper or three that would come and go. Totally tolerable and a massive improvement my overall status. Eliminiating the gluten especially took care of the muscle pain, aching, neuropathy, and other nerve pains. Those were the first to leave. According to all doctors, I don't have Celiac because I am negative on all Celiac tests. So terms like "Wheat sensitivity" and "Non celiac gluten sensitivity" have been bandied around.
But my biggest sign 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: Gluten. Wheats. Caffeines. Stress. And 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.
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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:
https://www.youtube.com/watch?v=KLjgBLwH3WcI 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.
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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.
Examples:
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
http://www.amazon.com/Jarrow-Formulas-Q ... =ubiquinol* Alpha Lipoic Acid 100mg
http://www.amazon.com/Jarrow-Formulas-A ... ywords=ALA* R-Lipoic Acid 200mg
http://www.amazon.com/Doctors-Best-Stab ... ipoic+acid* Fish Oil - Max DHA (two per day)
http://www.amazon.com/Jarrow-Formulas-M ... ds=max+dha* Vitamin B Complex without B6 (only on Mondays)
https://www.desertharvest.com/shop//ind ... how_detailExplanation: 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. Paleoonthego.com 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).
http://www.cleopatraschoice.com/dead-sea-salt.html* 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.
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