Cures or Promising Therapies Over the Years…

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Postby Angie on October 29th, 2007, 9:36 pm

That's a great one Sue! :lol: And I very much like the second Churchhill quote as well Basso- I only wish I didn't find them all so personably applicable. :wink: I can't top any of those, but you've all definitely fulfilled my laughing and philosophical quota for today. Thank you all for that. Now about that Fettuccini....
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Postby basso on October 30th, 2007, 7:45 am

Angie, what you are really saying is, as a society, we need to change our view of health care. The status-quo is averse to such change, because it can not see the benefit of any alteration. The "system" is not going to embrace our bfs, because it is not medically significant. Our system is based on pathology, not odds and sods, and feelings. It is an interventionist system, and that is why it does poorly with so many chronic ailments. Your plea to have neurologists, the world over, hand out pamphlets and understand our syndrome is really a plea to have a revolution in medicine...one which I entirely agree with. It is high time we that we viewed people as, well, people, and not as a collection of symptoms to be poked and prodded. Many doctors "get this," and have even written books on the subject, but their erudition can not turn the recalcitrant tide of the status-quo. We do need a more meaningful way in which to deal with those who suffer, a multi-faceted approach that combines the science of medicine with the art of healing. It isn't more information that is needed, nor a better way to interpret the information that we do have; this kind of thinking has reached it's natural end. The next big revolution, I believe, will not just be an effort to extend life, but rather, understanding what it is to be alive.

There is so much in modern medicine which is good, but like many successful philosophies (and it IS based upon a way of viewing the world) has made a church of itself. To ask it to embrace something new is to be a heretic, for we are questioning the foundation upon which this medical church has been laid. The dogma has become more important than the credo..."First Do No Harm."

We have the system we have, but over time, counter-cultures can, and do, change the trajectory of these systems. We are at the ground level, pioneers in this new wave of perceiving our health and what wellness really means.

Modern medicine can be likened to the internal combustion engine. It is a well-developed, highly successful system, but this success has come at a price. For the internal combustion engine, many people are scrambling to find a replacement, so that our consumptive life might continue as before. Whether it be modern medicine, or anything else, the success is not in finding a replacement, but rather, in delving into ourselves and asking, "is this the way we want to live?" or "is this any way to live?"

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Postby Angie on October 30th, 2007, 7:21 pm

Did I really say all that Basso? That sounds pretty profound, so that must have be coming from you. I thought all I asked for was a few pamphlets and Fettuccini Alfredo. :wink:

I'm kidding of course, though I do love Fettuccini Alfredo, but there was something that I heard recently about physicians which was very interesting. It was reported that while many doctors may have the power to treat our physical ailments, only a precious few have the power to truely heal.

What many of you do here to help us all heal and adjust to this condition is wonderful, but it would be ideal if it happened in a medical setting as well. What was healing about for me about my last neuro appt. It wasn't just that my new doctor knew the technical aspects of BCFS, that he has been treating someone else for it, that he listened to me and answered all my questions - though all were very important. My doctor also gave me a thorough examine and helped me with a treatment plan to relieve my pain, too. Those were all vital components for helping me learn to live with BFS.

The healing part of the examine really came as I was leaving the office altogether. As my husband and I were checking out, my very professional neurologist came to find me, his eye glasses now off and with a look of concern, to ask me one more question. He wanted to rule out one other possible contributing factor that may be aggravating my symptoms. He looked me straight in the eye and I could see he had actually been contemplating my condition and, at that point, I did not feel alone or scared anymore, whatever the outcome of this may be. His real, genuine human concern for me as his patient and fellow human being was so apparent, that all I could do was feel was pure graditude. My last neurologist had been so dismissive of me and belittling, that all my suffereing seemed compounded by it, I think. I was terrified before and didn't know where to turn at the beginning of this. It may be that in suffering alone with the unknown, whether our ills are great or small, that causes us the greatest degree of human distress.

So anyway, I will personally be very happy when I see a BFS pamphlet in every neurologists office. This is important because if our fellow BFS friends have neurologists that either have more pressing issues, or are not familiar with BFS, or don't have the gift for healing, BFS patients will at least know what they have, why they probably have it and that they are not alone. Trying to find my way through this condition without all of you would have been unthinkable. A pamphlet is not a substitution for a kind look or a show of genuine concern by a doctor, but it's a start.

And like so many things that you are correct about Basso, I hope that you are right about a coming revolution in medicine and all that entails. Human health is such a complicated and fragile gift. And since you know I'm all into quotes today, I think I'll end with this one:

"There is no greater sickness in the world today than the lack of love.” Mother Teresa
Last edited by Angie on October 31st, 2007, 7:14 am, edited 3 times in total.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby Chris swl on October 31st, 2007, 3:28 am

Hi Angie
Wow you have been hard at work with this post, good one.
I will have to read it over a few times

I found something that helped me forget about my bfs last Saturday. I went for a night out to Newcastle city, with the lads for a drink or two. We started at 630. Happy Hour! Drinking pints of beer. At about 10pm I had to go onto bottled beer, I rolled in the house at about 1am and I can honestly say in those few hour I never thought about bfs, or anything else for that matter. Well may be the surrounding views, they were nice.
Typical man!

However, the feeling in my head the next day was pretty bad. I tried hard to remember who had hit me over the head with a metal bar, or that’s how it felt to me. Was it the same person who had super glued my mouth together. Because when I woke up the next day, my mouth was dry as a camels saddle bag. My eyes where like p** holes in the snow, and I had the shakes all day. I think it must have been a good night, not sure. I can’t even remember my feet being in pain that night. Wow! good pain killer.
I can however remember the wife having a go at me for spilling curry and beer down my new shirt. funny how i can remember those things:

This line of cure/respite is not recommended on a daily basis, however I will be repeating this in December on my Christmas night out.

So I will go for the Alcohol you mention, and may be the love. Oh and a curry at the end of the night.

Great post

Take care
Chris Sewell
Last edited by Chris swl on October 31st, 2007, 9:50 am, edited 1 time in total.
Good luck to all with BFS/BCFS
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Postby Angie on October 31st, 2007, 7:38 am

Chris, you're so funny! Sounds like you had quite a night, but that probably woudln't be the best long term treatment plan for BFS. :wink:

It was just interesting to see how over these last few years people have come up with their own "cures" and "treatments" in an effort to fill the gap left by 'modern' medicine. If my neuro had prescribed me neurontin and valium way back in March when my symptoms were at their very worst, that probably would have saved me a great deal of pain, suffering and worry. Not to mention the ugly resentment I held onto as a result of being called a head case when in fact I have a physical condition.

I wonder what a combination of "cures" suggested by some of the others might look like?

1) love, calcium orotate, magnesium beers

Or

2) urine therapy, pod casts, Healing Codes

Or

3) colon cleansing, Yoga, back surgery

Or

4) Swing dancing, Botox, Chocolate and rum


Or, as a last resort, our good friend Steve’s favorite:


5) “Only you can cure yourself now, by forcing your mind to focus on the truth. You have benign twitching.”

Maybe not as exciting as some of the other methods, but throw in some fun size snickers bar, and I guess it’s worth a try.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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