My Story (Very long, but meant to help)

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Postby whataprettyworld on November 16th, 2007, 8:01 pm

To be honest, I have actually read this whole thread from beginning to end and cannot see any arrogance in my posts. I can see I have disagreed with you and quoted you on regular occasions but you seem to have responed by attacking me personaly throughout. I did acyually offer an olive branch earier in this thread as I felt that maybe we where getting off on the wrong foot but you just chose to ignore this.

If this thread contines in a fashion that is how the OP envisaged it I would be more than happy to contribute but as it stands at the moment I agree with you that it is probably best left.
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Postby nickc on November 16th, 2007, 8:38 pm

Oh, man, why am I posting in this thread.

Well, I don't have time to go back and read all of this.

But did any of the pro-anxiety group suggest that anxiety causes a switch to be flipped, which can't be flipped backwards ?

That is, if you tell me that anxiety is a one-way valve that causes BFS in SOME people, but reducing anxiety doesn't remove the BFS, I could probably go along with that.
onset: June 2007;; top complaints: pain/cramps in feet+hands, others;; Trileptal and Cymbalta
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Postby whataprettyworld on November 16th, 2007, 8:52 pm

nickc wrote:Oh, man, why am I posting in this thread.

Well, I don't have time to go back and read all of this.

But did any of the pro-anxiety group suggest that anxiety causes a switch to be flipped, which can't be flipped backwards ?

That is, if you tell me that anxiety is a one-way valve that causes BFS in SOME people, but reducing anxiety doesn't remove the BFS, I could probably go along with that.


I don't think anyone has suggested that about the valve idea.

I think the original OP is quite clear in his original post in that he thinks that a number of people who believe they may be suffering from BFS may actually be suffering from anxiety. Obviously, as the thread has progressed (??) people have put forward suggetions they there could be a cross over between the two or that they are totally seperate and distict.

My understanding is that anxiety and it's symptoms are totally reversible...that is not to be everybody who experiences anxiety will be 'cured' as they may not take the necessary steps to reduce their anxiety etc....of course, as anxiety also can also produce physical sensations (if you are in the anxiety camp) then this can produce more anxiety often focued on health.

IMO, the most imporatant thing they was addressed in the OP was the idea as to what anxiety actually was and how it is more of a CNS burnout rather than the traditional idea that anxiety is usally presented as.

My symptoms actually fit a BFS dx (if I haven't got a neuro nasty) and they also fit what my GP, chiro and CBT therapist are telling me are classic anxiety sensations so it is very hard knowing who to believe...I have to say though that as I've made efforts to control both my anxiety and constant symptom monitoring things have improved for me. That is probably why I am more in the anxiety camp...of course I could relapse tomorrow and be firmly in the BFS camp. Maybe this has happened to a lot of people on here and is why they are dismissive of the anxiety explanation?
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Postby Tui on November 17th, 2007, 4:28 am

I have only just noticed the Board Etiquette on the top of this forum which says:

"The one thing that I feel strongly about is that we treat each other with respect on this board. That doesn't mean that we all have to agree or have the same view point, but it does mean that personal attacks and insults are not acceptable.

That said, I would appreciate it if every member would take the time to consider how their comments will be received prior to posting them. And we should all remember that not everyone has the same sense of humor/tolerance for comedy or acceptance of BFS that some of us do. Each of us here at some point was desperate and packed with fear/anxiety, and in great need of support. Most of us here received that support without ridicule....we owe the current members that same type of support"

Kevintwitcher received VERY LITTLE support here. I am saddened to see that rather than just having a different opinion, some members here engaged in personal attacks. Furthermore, instead of saying "That's great! Keep it up! Let us know if your symptoms remain at bay!"... members who seem to be doing better are discouraged, told that they never actually suffered in the first place (or will have their symptoms return) and supplied with medical (mis)information despite of not having the right background.

In the end this board will never hear from those who got better not because they don't exist, but because those who get better will feel it's not worth sharing their positive story and positive thinking.

That's certainly how I was made to feel when I posted about Threelac helping me. Among other things, I was accused of trying to market to people. Fine. I'm not interested that much in posting about the great reduction in my symptoms anymore and those who are really interested choose to PM me.

Not many though seem to be interested in happy endings (unless they involve drugs), which is evidenced by the fact that disaster stories always get the largest amount of replies, while "doing better" stories go unnoticed. This one, unfortunately, being the exception.

Well all I have to say is: Kevin, good on ya for choosing to do something which has helped reduce your symptoms to a minimum. Keep it up and don't let anyone here convince you that you will die twitching or that things are out of your hands.
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Postby Tui on November 17th, 2007, 5:01 am

Jennhaz wrote:I also have found articles that say the opposite and dispute that article, but ya know what I am not going to post it because I believe there are people that will get upset, and about now I really think you are not worth it and this is going to be my last post about this, actually I think this is my last post. For a couple of reasons, one this board is turning into an anxiety forum, and that is not why I am here. Two because I find it a bit dishearting that the people on this board are letting it get to that point , and letting someone come on this board and be a total smarta** is a little much. Quoting your arrogance, " Yep, that is what he said."

Plug ears if you dont want to hear:

You just cant let things go can ya. I have a feeling you are a real big smarta** that probably alot of people cant stand to be around for more then 5 minutes, well of course it depends on the company you entertain. I do not care what anyone says about what I just wrote, if you do not see this guys arrogance and the way he trys to instigate then oh well but I do and if you want to keep someone like this around then have at it....Outta here...Jenn


Jenn,
I'm sorry this thread has made you feel like you need to leave the Board. I believe that everyone's opinion here is worth hearing, everyone should be given a chance and support. I don't think that anyone should be kicked out of here unless they are truly nasty or a fraud, which I do not think is the case here.

You have obviously taken offense to a lot of statements about anxiety, and no doubt because of the cr*p experience you had with Dr's trying to get rid of you by telling you it's anxiety. I'm truly sorry about that. But please try and understand that NOONE here is doubting that some people's symptoms may be caused by something else.

Although we share some of the common symptoms we are not all the same. Some people have tongue twitches, some twitch 24/7 in their calves. Some have cramps. Some have atrophy. Some have random twitches on their body. Some have hot spots. Some buzz, some get pins and needles. Some are fatigued. Some have all of the above. Some have very severe symptoms, some have milder symptoms. Some find help in taking Tramadol and similar drugs. Some don't. Some find help in reducing their anxiety, some will not. But if you could be one of ten/ hundred or even one of a thousand people who could get better by reducing their anxiety, wouldn't you want to give it a shot? What have you got to lose? It can only be good for you one way, or another.

You have a choice to either try it or not. But you should not be taking away the opportunity for people to hear about someone's success, to encourage success stories and to perhaps become another one of those success stories.
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Postby smali on November 24th, 2007, 5:00 pm

OMG :shock:

Tui wrote:In the end this board will never hear from those who got better not because they don't exist, but because those who get better will feel it's not worth sharing their positive story and positive thinking.

That's certainly how I was made to feel when I posted about Threelac helping me. Among other things, I was accused of trying to market to people. Fine. I'm not interested that much in posting about the great reduction in my symptoms anymore and those who are really interested choose to PM me.

Not many though seem to be interested in happy endings (unless they involve drugs), which is evidenced by the fact that disaster stories always get the largest amount of replies, while "doing better" stories go unnoticed. This one, unfortunately, being the exception.


I can't agree more with what you said. Same here. I tried though but hardly anyone seems to be interested. I am still recovering, I am still curing but who cares??? For me it was the main reason not to come here anymore. I do want to help out others even if I don't twitch anymore, but I need some response, some feedback my posts are taken seriously.

If you all think you know it better, fine! That is your loss. I got my cure but not knowing it all better and accepting I had overlooked something. Thank God!

Kevin, keep up the good work. I am very glad for you. You found your cure. Whoever wants to debate your way, let them. As I said, it's their loss. I am glad you posted your solution. Let's hope, despite of everything said here, it helped out some others. And that is why we do it for, right?

:wink:

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Postby Nancy on November 24th, 2007, 7:21 pm

Smali: So what did you do to free yourself from the twitches, I'd really like to know?
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Postby zekebcfs on November 24th, 2007, 10:58 pm

I am interested in what happens to someone that does not have anxiety issues but leans more towards the cramping side of BCFS. What is there for me who does not have anxiety and has been seen by three psycologists? They have deemed me as having little to no anxiety and my sxs persist.

I am glad that for some it is simple anxiety. Now what about me? After having seen so many MDs, DOs it makes me feel weird for lack of a better word that it is just anxiety. Is it possible some of us have already been down that road. I so much wish it was just anxiety for me but it is not. For me it is not the twitching its the cramping. Now even the psychologist say that there is a major disconnect between twitching and cramping. I have yet to hear anything from anyone that says cramping is anxiety related especially when I have been seen by the specialist to give it the benefit of the doubt long before this thread. Anyone!
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Postby Angie on November 24th, 2007, 11:04 pm

You and me in the same boat, Zeke. We had a great turkey day by the way. Hope you did, too! :wink:
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Postby zekebcfs on November 24th, 2007, 11:12 pm

We just have to be glad some have found their solution.
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Postby jazzman on November 25th, 2007, 12:16 am

I have been reading this board for awhile and have refrained from chiming in until now. This thread caught my attention because the initial posters story is very similar to mine. I have had twitching, buzzing, cramping, and odd pains on and off for over a year and a half. All 3 neuros I saw agreed I had an anxiety condition and felt they were the source of my problem (after I came out ok on multiple tests). However the third one I saw actually took the time and explained to me how anxiety causes these types of symptoms. That really helped me accept his diagnosis. I also knew that I have always had a little "health anxiety" and other stress factors in my life. Just like so many here I got so much worse by looking up symptoms on the internet. I started taking my mind off my physical symptoms and started working on my anxiety issues with a professional. I too was coached to change my diet up quite a bit and I know that has helped. Anytime I would "cheat" I would get worse. I also joined some anxiety discussion boards and a local support group and was pleasantly surprised to find that so many people that have an anxiety problem have all these same symptoms. It is extremely common. To make my long story short I am doing so much better now and my symptoms have reduced dramatically. I actually have symptom free days now.

I can vouch that there is something to the anxiety cause since it was my cause. It is a shame that others who feel that is not their cause have to get on the defensive against others who are having this due to anxiety. I had to laugh a little when I read someone comment that this is turning into an "anxiety board". This is an anxiety board. So many people that post all over this board are obviously having an anxiety crisis and that is easy to see in their posts.

Thanks kevintwister for having the guts to relate your story. It's great you want to help others and I am sure you have. It has helped me by reinforcing what I already knew. I didn't do so myself because I felt it would get the type of response yours did and I was concerned it could affect my progress. Reading a lot of negative stuff wouldn't have been good for me. However now I feel I am passed that. Though I have a feeling I might regret coming out of "lurker" status.
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Postby smali on November 25th, 2007, 3:40 am

Nancy wrote:Smali: So what did you do to free yourself from the twitches, I'd really like to know?


I followed Tui with big doubts and started Threelac. My patience is rewarded and I can say I am very relieved. My twtiches caused me more anxiety and even this I lost right now. I can feel an occasional twitch now and then, depending on several factors I experienced during the day but any elevation soon disappears again. My autoimmune disease (medically confirmed with several tests) even is not bothering me anymore for months now and I stopped the medication. I surprised my family and left my doctor speechless.

Like the possible anxiety cause, my cause will not apply for everybody. I strongly feel those who will debate someone's cause instantly without any further more personal honest research, are beyond help.

I understand admitting anxiety and doing something about it, is a far more difficult way than taking simple daily drugs. Might be some people already panic just by the thought anxiety might be their underlying factor and that is why they react the way they do here. That is very human. Mind you, drugs won't solve the twitches. The easy way is never the solution.

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Postby smali on November 25th, 2007, 4:21 am

zekebcfs wrote:I am glad that for some it is simple anxiety... I so much wish it was just anxiety for me but it is not


My 2 cents: In your opinion it might look like 'simple' and 'just'. In the opinion of people who do suffer from anxiety it certainly is not simple. :wink: It takes a lot of effort and a lot of accepting and changing your whole way of life to turn around anxiety issues.

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Postby Nancy on November 25th, 2007, 9:25 am

So what exactly is Threelac? I guess I'll be trying that shortly.

I don't know if anxiety or stress was the initial "cause" of BCFS for me but I can say with certainty that it aggravates the pain and twitching for me. This past week end is a perfect example, as we had two days of guests and working on old cars and serving up food. While enjoyable, it is stressful and my lips were buzzing yesterday (new symptom for me) along with "popcorn" in the abdomen and some pain in my right fore arm every time I sat down. In fact, I'm having the abdominal twitches as I type this. I never twitch or ache much while I'm moving at least. I will say that until this past week end, the symptoms were almost gone. Stress? Probably.

The symptoms do not cause me anxiety anymore but they are annoying and I'd like to find ways to be rid of them. From what I've read in the articles on BFS/BCFS the symptoms can last a few weeks to many years. I have also read that a number of things seem related to the emergence of the symptoms including over-exercise, viral infection and anxiety. I fit at least 2 out of the 3 if not all those "risk factors". So, I'm willing to try anything that will improve my well-being. I'll probably also "join" the Anxiety Centre and keep an open mind to any information that could be beneficial. For the price of a book, you get scads of articles on anxiety and how it impacts your well-being.

Finally, anxiety IS physical. Your thoughts, for that matter are essentially electro-chemical firings in your brain...they are "physical" too. Those neuronal discharges fire up certain pathways in the brain, one of which motivates us into a fight or flight response in which your heart rate goes up, your breath feels short, hands tremble, muscles tense...all to prepare you to run or protect yourself by attack. If you exprience this adrenaline surge over prolonged periods of time, you become increasingly vulnerable to mental and physical maladies and there is plenty of scientific evidence to support this process. For those it applies to or those who think it may offer them some help, it is worth it to examine the information and understand the processes at work and ways to better manage it all. Medication is only one avenue...working with our thought-life...our beliefs and the manner in which we perceive our world is another. Psychotherapy helps address the irrational beliefs and negative thought-patterns that create and prolong depression and anxiety. There is nothing easy or simple about this sort of work. It takes courage, perseverance and faith to work it all to the good.

The dialogue has become so much more respectful here and I appreciate that. I hope others don't hold back from sharing their success stories out of fear of such backlash...we all lose when we miss out on the anecdotal evidence of what has helped otehrs.
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Postby smali on November 25th, 2007, 9:38 am

Nancy wrote:So what exactly is Threelac? I guess I'll be trying that shortly.


Nancy, Threelac is not something just to try for only twitches. You need to look at the whole picture. Take a look at http://www.candidafree.net for just an example of what this picture can be.

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