My BFS Experience and Potential Common Factors

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My BFS Experience and Potential Common Factors

Postby metta on March 25th, 2007, 12:01 pm

This is my first post about my own experience with BFS....I've provided this detailed summary as background for the questions I will be sharing next, and as a basis for comparison with others who may be looking for patterns of common experience.

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BACKGROUND:
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-- October, 2005: Serious back injury at the hands of a chiropractor. Not diagnosed, but I suspect it was a herniated disc.
-- Months of excruciating pain and limited mobility. (No meds other than Ibuprophen, since I opt for allopathic medicine, surgery, etc. only as a last resort.)
-- By February, 2006, I began seeing some slow progress in recovery using various alternative healing modalities, including acupuncture.
-- No twitching throughout this period.

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INITIAL ONSET and EARLY HISTORY
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-- August, 2006: Began having mild twitches during a couple of acupuncture treatments for the pain from the original back injury. However, the twitches were painless and subsided as soon as the needles were removed. I just assumed this was a sign of good chi flow, and didn't think twice about it, since this twitch response commonly occurs during acupuncture sessions.
-- Late August 2006: Second serious back injury, at the hands of my acupuncturist: she hit a nerve in my spine (lumbar area) with an acupuncture needle, and the pain shot 1/2-way up my spine.
-- Within 12 hours, I had massive fasciculation throughout my entire body. My acupuncturist had no idea what was going on, and it took me 3 days of research on the Internet to figure out that magnesium might help -- so I dosed up heavily (both orally and with epsom salt baths -- see below) and the twitching finally stopped.
-- September, 2006: Within 1 week, I developed a raging case of shingles: a severe herpes zoster outbreak on my torso triggered by the needling back injury.
-- For 3 months I was completely immobilized with pain and could not work. Bathed in magnesium daily, and dosed heavily on magnesium to control the shingles-induced muscle spasms.
-- During the shingles outbreak, I experience almost continuous twitching on my right side (primarily arm and hand) -- the same side as the shingles outbreak.
-- This twitching was exacerbated by one session of micro-current therapy for the pain, so this was my first and last micro-current session.
-- Eventually the shingles outbreak and the twitching subsided. However, I did develop post-herpetic nueralgia (PHN) which lasted 6 months from the initial outbreak.

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RECENT ONSET
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-- February, 2007: Extreme, body-wide fasciculation (head-to-toe + face) triggered by the use of an Albuterol inhaler for asthma. Brought it under control again with high doses of magnesium.
-- March, 2007: Another full-body episode triggered by either a mold exposure and/or the use of a detox foot bath -- I'm not sure which. Hard to bring the twitching under control completely.
-- March, 2007: Another full-body episode triggered either by an asthma attack and/or a hydrogen peroxide drip for asthma therapy -- I'm not sure which. Low grade twitching is still continuing now....

Since this recent, recurring onset, I've had more trouble bringing the fasciculation under control with magnesium. However, I hope that resuming the herbal nerve formula I took during the shingles outbreak will help: http://www.trivita.com/2006/shop/produc ... x?pid=1043

NOTE:
-- My twitching is not accompanied by pain.
-- Exercise does not seem to be debilitating. In fact, it may even help a bit, although it is still too early to really tell....

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OTHER POTENTIAL RISK FACTORS
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Since there seem to be a number of potential common threads among BFS'ers, I've included this additional background info for the sake of comparison:
-- 1960s: Massive amalgam (mercury) fillings placed in the deep fissures of almost all my teeth by a dentist who claimed this would 'prevent' me from getting cavities.
-- 1972: Mononucleosis
-- 1970s: Diagnosed with low thyroid function
-- 1980s: Silicone breast implants
-- 1980s: Vitamin A overdose, which affects the liver (I took high doses of Vitamin A for many years to control acne that would not respond to medication, and that was probably an indirect result of all the mercury fillings).
-- 2002: Toxic mold and chemical exposure resulting in mold allergy, chemical sensitivities and asthma
-- 2005: Menopause
-- 2006: Diagnosed with adrenal exhaustion
-- I've also taken Cipro at least twice in my life.

With this background, I will now respond to the survey, and post some of my current questions.

In addition, I want to thank everyone here for sharing your advice, experience and feedback. This forum has already been invaluable for me, and I am grateful for your support and all the information you have shared!

With grateful appreciation,
Metta

P.S.
Q. for moderator: For the benefit of others, can we post links to products we've been using? If so, I'll include these links, as well.

UPDATE
For more detailed info, see my "Recommended BFS Resources" link, below.
Last edited by metta on May 19th, 2007, 3:50 pm, edited 8 times in total.
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Postby basso on March 25th, 2007, 1:34 pm

Hi ya, Metta. You have certainly given us a list. LOL Your experience of a number of immune disorders, is a common one here. There always does seem to be a catalyst from which the bfs starts. The trigger is not always the same, but the result is. This would mean, I think, that we are predisposed to bfs, and that given the right, or wrong, stimuli, we come down with bfs sx. There is scientific evidence of a chemical imbalance, but I have decided that my concern, at least, will not lie there.

Further, I have had a number of conditions such as, mono, CFS, and the like, but I now believe these to be spiritual depression. Yes, the wackadoo has arrived on your thread. My reason for stating the above is because I have now convinced myself of a system, beyond the immune system. The first fire, if you will. That first spark, that proved us alive and was the parent of the immune system.

I think it is helpful sometimes to find commonalities, but I honestly believe that little good will come from it ultimately. The reason being that we have all been exposed to too many of the things that you have stated. I have read a veritable library of books on allergies, yeast infections, vitamins, etc and in the end, they did me little good. Mind you, I can only speak of my own experience.

However, after the onset of my bfs, a revolution took place in my brain. Perhaps my brain itself was twitching, who knows. I no longer looked upon myself as a sick person, but rather, a very healthy miracle. If I was a life-force, spawned by a long line of life-forces, might I not then also have the capability of bridging a few chasms, along the way. I decided, or rather it seemed to be decided for me, that my twitching was my spirit communicating with me to be set free.

Hitherto, I believed that I needed an outside intervention to make me well. Remove the amalgams, cleanse my blood, cleanse my colon, take vitamins, use homeopathy, or the like. All of these seemed hopeless, but I tried them all, nevertheless. I will say that homeopathy proved efficacious in some ways, but did not get me over the biggest hump.

Now that I listen to my inner-voice, and allow my spiritual self free reign, I have been healed in a myriad of ways. I was exposed to mold over 15 years ago, subsequently got mono, and then had swollen lymph glands for all those years. I can now happily report that these glands have completely gone back to normal, my energy is boundless, sex is better than when I was in my twenties...and what else is there. :P

I have come to the conclusion, that for me anyway, it is the spirit which dictates health, and not the body. This is not an absolute truth, but an abiding one.

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Beyond the physical....

Postby metta on March 25th, 2007, 3:25 pm

Thank you, Basso, for your generous feedback. I am grateful for your your kind and thoughtful reply (nothing wackadoo about it), and I am delighted you've had such success in taking a spiritual approach to your recovery.

You hit the nail on the head with the reference to searching for an "outside intervention" (that definitely has been my approach for quite some time now), and your feedback certainly provides good food for thought.

As a Christian Scientist, my mother has long shared your view of health ("spirit dictates"), so this perspective is not unfamiliar to me -- and there may be a lesson for me here, as well: "my twitching was my spirit communicating with me to be set free"....
Last edited by metta on May 19th, 2007, 3:50 pm, edited 2 times in total.
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Re: My BFS Experience and Potential Common Factors

Postby garym on March 25th, 2007, 10:25 pm

metta wrote:P.S.
Q. for moderator: For the benefit of others, can we post links to products we've been using? If so, I'll add these links into the text of my message.


Metta,

Welcome to the board and feel free to post links to products that have helped you. Just please don't start marketing products here. There is already enough of that on the side of the forum (google ads).

Take care,

Gary
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Thanks!

Postby metta on March 26th, 2007, 5:10 am

Thanks for your helpful feedback, Gary. I've inlcuded links to all the resources I mentioned in my original post on my "Recommended BFS Resources" page (see below).

These items are simply educational resources and products that have been of benefit to me -- not web sites or products from which I receive monetary gain.

BTW, it was fun to notice that you are also located in Texas! :D
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Causes ?

Postby CJH on March 27th, 2007, 2:40 am

Think we can safely say we do not know what either causes BFS or what effectively treats it.

Common thread is that most of us suffer from anxiety, and at a time of greater stress we notice the twitiching and then fixate on it looking for an explanation, worrying it is MS or ALS and doubting our carers.

There may well be a trigger as with many long term conditions. Given that all of us have life events it is impossible to attribute any particualr event to BFS. Remember for example that nearly all of us have infectious mononucleosis (glandular fever) at some point in our lives.

My best guess. Prediposing factors stress and anxious presonality. Genuine trigger unknown probably autoimmune after infection. Best response learning to live with the thing as a nuisance. Remembering how lucky we are not to have a progressive disorder. Sort out our anxiety state generally.

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Postby WitchyTwitchy on March 27th, 2007, 7:44 am

I've always wondered...

In the beginning of all this, I was tested for mono. The test was called mono-spot. It was negative. My question has always been...

is that specific test just for present infection or would it have shown prior infection? Does anyone know the answer?

Much appreciated.
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Just a practical consideration....

Postby metta on March 27th, 2007, 8:25 am

In my case, I've never typically been an anxious or nervous person...and when this set in initially, I didn't immediately go into an ALS freak-out. I am, however, intellectually curious, so I did my research, took my magnesium and got on with life. (That was last August.) Plenty to do here without worrying about a benign diagnosis. Didn't even bother with any MD visits or tests. (No pain, didn't need any meds.)

The only real concern for me recently has been work since the twitching stopped being episodic, and increased in severity and scope to the point where I look like I have Parkinson's (whole body twitching from head to toe, including face). I just thought this might be distracting and disconcerting for my clients (I work as a professional meeting facilitator) or for an employer -- and besides: it is exhausting, so I have far less stamina than I used to.

So, the litany of details (above) was simply my attempt to ID common threads I saw in my own experience from many of the other threads I read here prior to to my initial post. Even though this is benign, it has been looking like it could begin to interfere with my ability to work productively (it already has) or even to be gainfully employed -- so this has actually been the prompting behind my recent investigation and inquiry. Just a practical, pragmatic concern -- not runaway anxiety.

In any case, my recent update is good: I've by experimenting with different types of magnesium, and I'm now getting better results again, so I'm encouraged that this will prove to be helpful on the work front.

As ever, I continue to appreciate all the positive support and camaraderie in this forum! :)

With appreciation,
Metta
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Postby jake_tcbm on March 27th, 2007, 8:26 am

I know I had 2 mono tests done, first just to show current and then a "more advanced" one that shows if you've ever had it. Not sure which one the mono-blot is, but tests for both exist and are distinct.
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Postby WitchyTwitchy on March 27th, 2007, 8:36 am

I'm leaning toward the mono-spot being for present infection only, but then again who knows.
If anyone does- I'd greatly appreciate the answer.
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Postby Carl on March 27th, 2007, 11:41 am

Although anxiety and related traits can contribute to the onset and possible continuation of this disorder I am not certain whether this factor is the overriding cause of this syndrome. In my case I was pushing myself physically in the gym, working out at very high intensity on the treadmill (up to 30% incline) or the elliptical machine for one hour and then immediately proceed to the weight room where I performed entire body workouts with substantial weights. Consequently I noticed some pain and tightness in the muscles around the neck and trapezoid and then came the twitching in the left thumb that spread to the entire body. Yes, I am anxious regarding these symptoms that perhaps they represent the onset of a neuron motor disease but was not so prior to the onset of these fasculations and paraesthesias.
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Re: Causes ?

Postby Carl on March 27th, 2007, 11:46 am

CJH: "Remember for example that nearly all of us have infectious mononucleosis (glandular fever) at some point in our lives".

Carl: Are you certain "that nearly all of us have infectious mononucleosis (glandular fever) at some point in our lives" or is it more accurate to state that we have the Epstein-Barr virus that resides in the ganglion of nerves?
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Update: Symptom-free most of the time

Postby metta on May 19th, 2007, 6:30 am

FYI....

Since starting this thread back in March, I've increased my intake of ionic magnesium, I've resumed my nerve formula, I've added B12 and Alpha Lipoic Acid to my daily regimen, I've improved my diet, I'm getting more rest, and now I'm virtually symptom-free now.

However, I think ionic magnesium chloride is still the singlemost signficant factor for me in remaining symptom-free. (For some reason I have much better results with this form of magnesium.) I just have to make sure I keep the dosage levels high enough, and I simply adjust them based on need.
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Postby Roger G. on May 20th, 2007, 5:10 pm

The one most common thread I seem to see here is "VIRUAL" (Note: forget the fillings, not a factor.)
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