Did you have a Dr. give a theory or shed some light

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Did you have a Dr. give a theory or shed some light

Postby dande5 on September 13th, 2004, 8:34 pm

on what causes BFS? :? I know many of us have a theory or at least can trace it back to something like medicine or drugs and others it just came out of the blue. When I asked mine he said they don't know why.

Just curious if anyones Dr. had a theory why it starts, how it spreads or how long it lasts.
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Postby Stephanie on September 13th, 2004, 8:36 pm

One neuro thinks my pregnancy brought it on, another thinks chronic Lyme, the rest don't know.
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Postby Ava on September 13th, 2004, 10:17 pm

My neuro thinks excercise brought mine on since I started a hard core exercise program 2 months before it started and I had not exercised regularly for 10 years prior.

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Postby dont on September 14th, 2004, 6:44 am

My neuro said viruses could bring it on and he said if you are prone to it and it's dormant and you have sever panic attacks like I had that can bring it on and that is when my started again.

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Postby puggriffey on September 14th, 2004, 9:02 am

My trip to Mayo concluded with a "what is it" discussion.

The neuro I spoke to there (not a part of the infamous study, but well versed in it) said the prevailing best guess about this type of syndrome is that it is a latent cellular response condition that is triggered by a viral infection (or series of infections), which then produces a immune system response that goes into long-term "hyperdrive" against those cells. They suspect that it is highly possible that many of us have really had this "condition" dormant or "semi-active" within us for a long time, and that an environmental trigger ultimately pushes the immune system into a state of activity. That is why they CANNOT discount stress, physical exertion, or other environmental factors as being contributing sources of "fuel" for this condiiton (i.e.: what makes it prolonged and difficult for some, versus short-term and manageable for others), but that it is unlikely that any of these alone, without the viral component, is likely to trigger the full scale "response" that we experience when BFS sinks in.

He said that the prevailing wisdom strongly leans against a chemical or nutrient deficiency cause, but it cannot be ruled out completely in every case. He did say that it is noteworthy that with such a growing population of data to work with, that no significant trends or consistent findings of any sort have turned up to indicate that type of cause.

In general, I got the "sleep a lot, eat well and get regular exercise" send off, and if you think about it, can ANY of those things not be as good for you as any medication or positive diagnosis we all constantly seek???

Fun stuff, this BFS.

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Postby whatnext on September 14th, 2004, 11:15 am

Ava wrote:My neuro thinks excercise brought mine on since I started a hard core exercise program 2 months before it started and I had not exercised regularly for 10 years prior.

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I can relate to that too. I didn't start having problems until I started walking about a mile ever evening. Who knows...
I will ultimately and completely crush, defeat, anihilate, and eradicate my anxiety so it cannot and will not do the same to me.
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Postby Barb916 on September 14th, 2004, 6:04 pm

My doctor hasn't given me an explaination for my twitching. However, I find it interesting that some of you can relate the onset of symptoms with excerise....me too!! I also have not excerised "regularly" for many years. This past spirng, I started walking 2 -3 miles a day. After 2 weeks of walking, the twitching started in my face and just continued to spead. Needless to say I stopped walking. Not because I thought it had anything to do with the twitching but because I did the internet search on twitching and sent myself into a worring frenzy! I'm getting better but I still have my bad days here and there.

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Postby Ava on September 14th, 2004, 7:00 pm

That whole dialogue on what the Mayo Clinic doc said sounds right on to me. I think I've had a lesser version of this for years and then the exercise made it worse. I'm not sure about the viral connection but I agree my system just hit an "overload" level of something and what was a mild twitching problem became a full blown case of bfs.

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Postby dande5 on September 14th, 2004, 8:40 pm

A bit long but here goes,

I also have a condition known as Mitral Valve Prolapse Syndrome, which is, in a nutshell, a benign normal variant of the mitral valve. That in itself does not cause any symptoms. But many who have the prolapse have an imbalance in the nervous system, which they say you are born with but it may not surface right away, could be as a child, teen or adult. The imbalance which is called dysautonomia has many symptoms. Low blood pressure, fatigue, exercise intolerance, palpitations, muscle twitching, anxiety/panic attacks, weight loss/gain, allergies, intolerance to heat or cold, tingling or numbing sensations and the list goes on. Many with MVPS also have fibromyalgia which has many of the same overlapping symptoms. Shares some of the same symptoms that BFS and some BFS'ers have.

I've struggled with racing heart beats, palpitations, dizziness, achy joints, anxiety and panic attacks, heaviness in the limbs, tingling and numbing sensations for many years. I found out I had MVP after a bout of some kind of virus I was just so tired, my joints hurt, my hands cramped. I was tested for everything under the sun, lupus, lyme etc. During that time they heard a click in my heart which was diagnosed as MVP. The rhuematologist told me I had fibromyalgia. The only thing that turned up on my tests is that I had a high ASO titer, which is a strep level. I had strep many times as a kid. I wound up gaining some sort of control over these many symptoms over the next few years, but this darn twitching has been the worst fight so far, amazing how those twitches can make you so nervous...

The end of this story...In Feb. my 39yr old cousin had a brain aneuryism and subsequently died within about a week and left behind a husband and 2 young children. I tend to react to these things long after the shock is over. I started to have some anxiety and panic issues again. Started using a abdominal exerciser and began to have a buzzing sensation off and on in my lower abdominal area. Returned to chiropractic treatment. After a few weeks of that going on I was becoming quite stressed with the twitching. I went to my daughters gymnastics tournament, was feeling kind of "off", began to feel achy etc, and lo and behold twitching and buzzing started all over. Read the "no no websites" and twitching got worse. Been to neuro, got clean bill of health then and at 3mth follow-up,,he still sees no evidence of anything going on. And the rest is history..

I notice how for some it's exercise which I started a new one then, and virus which I don't know maybe I had that day that I started to feel achy, and a very stressful time. To much on the sensitive nervous system I guess Who knows maybe it's one of these things or a build up of several things that it takes to set it off for us..

Just my long winded story and thanks for the replies so far!
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Postby Floater on September 14th, 2004, 8:58 pm

my doctor says bfs it quite possiblly related an auto immune response to a virus
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Postby Ish on September 15th, 2004, 10:55 pm

My symptoms did start during a period of heavy exercise, doing squats and presses to failure twice a week, biking, strict dieting, etc. I'm in my mid-50s, otherwise in good health, maybe a bit especially fanatic (one more rep! please! please! aaarrgghh!) when this thing hit me.

[And no sign of viral infection that I can recall, no time spent in lyme areas, and no special stress or anxiety either. I work hard, am a little depressive, but rarely anxious or stressed.]

BFS.com and Neuromuscular BFSers are certainly some of most gym-going, iron-pumping, jogging, biking people I have ever seen -- way more of that then one would expect to see in a random sample. Others have noted this too and conjectured either the exercise itself, or something differentially associated with it like protein drinks (also something I was doing then and something some have wondered about as a possible cause in this forum).

Posted a query about exercise and BFS in Neuromuscular, and of course turned up as many counterexamples. Obviously even if there is one underlying mechanism for the syndrome, the evidence for multipe original causes for setting that all in motion seems strong.

Obviously I'm in the "what the heck did I do to cause this" phase. Biding my time before first neuro and EMG, in 3 weeks.

[Symptoms: 24/7 popcorn twitches all over with 1:1sec in calves and 1:10secs elsewhere, major oppressive soreness in thighs, some in calves, some pain, some buzzing and vibrating, etc.; the twitches starting almost 1 year ago, the soreness c. 6 months ago; cramps and pain 3 mos ago, everything has gotten worse over time. Assuming BFS because nearly 1 year w/o weakness, but we see next month after the neuro/EMG]
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