My Story (Very long, but meant to help)

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Postby zekebcfs on November 25th, 2007, 10:53 am

It is simple and just something that can be modified through behavior. This is unlike my case were no matter what behavior I change it does not remove the cramping. I am glad others have their solution but not me. I do wish my case was just anxiety. Some time ago I did go to a neurologist that also said I had Tourette's and OCD (anxiety) that was causing my problems. After the medication (Xanax, Ativan & SSRIs) the theory just fell apart since I was as high as a kite. So I did go through the anxiety resolution protocol. Alas nothing came of it. Believe me I wish it was just anxiety but it probably is not. I still hope and wish it was true for me but cramping is just not part of the anxiety explanation package. Twitching yeah. Cramping....no way. I don't mind that some believe that anxiety is the cause because for many it is the cause. Many here have not gone through the filters I have and jumped the gun and ended on this site. I suscpect many are here for this very reason....they jumped the gun and did not go through the full battery of medical testing. Besides if it was anxiety the Klonopin I took for almost a year would have beaten that problem but it did not. Just more proof that it is not anxiety in my case. I do think some do good work by pcking out those who do not belong on the site and are needlesly worrying themselves and you all provide an alternative venue for them to explore. They should just have done it at the beggining not at this stage of the game. Thy just had a crappy doctor as far fetched as this may sound. I do like the CNS burnout explanation instead of the simple anxiety issue because that is me in a nutshell....my job! I just wish it was true for me. Just this morning I was looking for the name and number of the neurologist that gave me the SSRI for a follow up. I always like to give things the benefit of the doubt plus the fact that I have not been to this neuro for almost a year. I would like to add that my wife seems to have the anxiety form of BFS. So I have someone to directly compare to. When she comes under pressure her lips, eye lids and thumb twitch. I am by no way dissmisive of the anxiety explanation for many since I live wth one in my own house. But what about me. She never takes any medication she just does not give a *beep*. Maybe I am just a big baby. She will need to take care of me tonight to make the cramping go way. And as Basso has noted I never cramp while the wife and I are having fun an night :lol:
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Postby zekebcfs on November 25th, 2007, 12:10 pm

I listened to Jim's message on anxietycenter.com. He was way worse than I am or ever was. Poor guy.
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Postby Nancy on November 25th, 2007, 4:11 pm

Zeke: Sorry for your suffering. It seems you have left no stone unturned in trying to be free of your symptoms. It may be that you are like many of those folks with fibromyalgia...your symptoms, whatever their cause(s) are chronic and you must find ways to manage them even if you can not be totally free of them? The way I cope with that potentiality is by reminding myself "it could be worse". I don't like the twitching and the cramping but if this is what I have and it does not plan on remitting, then of course, I am not glad but I am relieved it is nothing worse and can choose to go about my life despite the annoyances. In fact, when I am moving...most of the symptoms are gone and so that is one sure way to get at least brief periods of relief. Meanwhile, I may try Threelac and see if it helps. Why not? (Smali, I'll do the research!)

OCD is something rather different from generalized anxiety, phobic disorders, and hypochondriasis and somatoform disorder but it is indeed in the anxiety disorders spectrum. It is difficult to treat but not impossible, requiring a combination of medication and cognitive and behavioral techniques. It can be truly debilitating when moderate to severe in intensity and I would never think it was "just anxiety" given just how challenging and for some, even destructive (physically, financially, occupationally, maritally, etc) OCD can be. It is less something one can expect a "cure" for so much as to reduce the symptoms and maintain one's self relatively free of them, I'm afraid (although being symptom-free is achieved by some). It does seem to run in families, as do depression and anxiety in general. Twin studies (separated at birth) seem to indicate that environment, while important is not as strong a predictor as genetics.

Anyway...I ramble. I hope your body recovers its usual good health, Zeke. You've apparently worked very hard to get things straightened out and no doubt you are frustrated by the continuing cramps/pain. Best wishes!
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Postby Tui on November 25th, 2007, 6:14 pm

Zeke,
I truly feel for people who experience cramping. I found it hard enough to cope with twitching, buzzing, pins and needles... and other symptoms that did not actually hurt but were just annoying. So to have cramping on top of all that must be quite debilitating.

And maybe in your case there is a different (to anxiety) underlying cause. I don't know what it is but you must listen to your own body. And as Nancy said, it could be one of those chronic conditions that you will just need to learn how to cope with. And we as human beings can be very adaptable. I used to find floaters very bothersome for months and months. And now, although they are still there, I go for days without noticing them (it's funny cause this sometimes makes me think "oh wow, they're gone", but then when I focus I can see they're still there).

I think in my case the reduction in my anxiety has helped heaps and I am not so hypersensitive anymore. And perhaps Threelac has helped reduce my anxiety. Who knows... all that matters to me is that I'm doing so much better.

You said yourself that when your wife is making you happy ( 8) ) you don't cramp. I think that's the indication right there that when you don't think about BFSC you don't experience it. :)

Also, it is foolish to think that anxiety can be "cured" by taking drugs. And to think that once you feel OK all the symptoms should be gone too. There are case studies of people who experience major trauma in their life that leaves permanent physical scars on them. I think that even once you've accepted that you're suffering from anxiety, and you start working on it, it takes a long time for you to truly be anxiety-free and for all the physical symptoms to disappear.

For you, anxiety may be caused by cramping (not the other way around). But I think that if you somehow manage to reduce the anxiety and just go "oh well" when you experience cramping, over time (not over night) the cramping will subside as well (or just not be that noticeable).
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Postby zekebcfs on November 25th, 2007, 8:01 pm

Cramping and cramp like sensations sure do cause anxiety. I will not even try to dispute that fact.
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Re: My Story (Very long, but meant to help)

Postby Wolverine on January 3rd, 2008, 10:35 am

Oh my goodness! What did I miss? This post is a perfect example on why I have not been to this site much lately.

I think it is interesting that many people on this site become experts at this condition based on what their doctors have told them. "My GP told me this, my nero told me this, my pshychologist told me this"

I love this argument I saw on this post a few times "You're doctor is wrong because my doctor told me differently" Cmon, can your doctor also beat up my doctor?

I don't think anyone here is an expert on this condition. I do think some are more informed than others though.

In any case, if doctors cannot or have not found a reason for this condition, then how could we?

I think it is absoltuely 100% silly to debate the cause of BFS or BFCS on this site. This site is a support group.

Get over yourselves. Especially you, Angie.

Could we please try to change this site back to a support site? Not a site were we try to change each others opinions.
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Re: My Story (Very long, but meant to help)

Postby k9ck on January 3rd, 2008, 12:20 pm

Wolverine,

I agree, sometimes this site just doesn't seem like a support forum, it appears more like a debate forum. We are all afflicted with this stuff, nobody knows anything about and that is the bottome line. If one could find out the reason by just reading internet information, you would think the doctors would have an answer if it was that easy.

I love this site, the people are great, especially old timers. They got me through pure hell, but this site does seem to have taken a turn to a debate forum, or he said she said forum. There are alot of newbies who could benefit from alot of support on this forum. I think the best information to give a newbie, once clear from a neurologist, accept BFS for what it is. Oh, I know it is emotionally tiring and exhausting and very difficult to do, but that is what we should be encouraging newbies to do. Not to continue to search the internet for new information, which could lead to further fears and frustrations. People should realize you cannot validate information found on the internet.

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Re: My Story (Very long, but meant to help)

Postby Angie on January 3rd, 2008, 12:50 pm

I apologize for upsetting anyone. I found my doctor's explanation of anxiety lacking in my case as I knew that I had a physical condition. I will hereby get over myself Wolverine and do my best to stay out of any futher debate on this paticular subject.

If anyone wants to see the research on autoimmune causes of this condition they can go to http://www.pnhe.info.
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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Re: My Story (Very long, but meant to help)

Postby stevepaul on January 3rd, 2008, 1:20 pm

I think posts with as many replies as this one are very helpful. It gives you an incentive to start compiling your "friend and foe" lists.
"The wonder of the world, the beauty and the power, the shape of things,
their colours, lights and shades; these I saw. Look ye also while life lasts."

Denys Pitchford Watkins
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Re: My Story (Very long, but meant to help)

Postby Angie on January 3rd, 2008, 1:32 pm

Oh great, Steve! Can't you see I was trying to avert getting on too many "foes" list now that we have one available?! Thanks for the help.

Again, I am very, very sorry for being abrasive on this topic. I am resolved to not doing anything more of that nature in the new year.

"Friend",

Angie

PS I have an autoimmune condition
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Re: My Story (Very long, but meant to help)

Postby christinesi on January 3rd, 2008, 1:41 pm

believe me i'm know expert. But my doctor said that even though the twitching is benign it is a nerological condition something happened with the nerves and this is how they are reacting
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Re: My Story (Very long, but meant to help)

Postby christinesi on January 3rd, 2008, 1:49 pm

i dont think its stress. I had no stress until the twitching. Just normal everyday life nothing that would cause my body to become a twitching mess. its a real physical thing that happend and neros that i went to said that it is nerological (a nerve disterbance) but benign (and that just means when they say it "that it wont dibilitate you"
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Re: My Story (Very long, but meant to help)

Postby nickc on January 3rd, 2008, 1:58 pm

I would say that this forum should be a place for BOTH support and discussion. It almost has to be...as soon as doctor #1 says something different than doctor #2, we need to know this...we need information. It would be wrong to keep these things to ourselves.

It's a question of organizing the categories into supportive threads and more discussion-based threads somehow.
onset: June 2007;; top complaints: pain/cramps in feet+hands, others;; Trileptal and Cymbalta
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Re: My Story (Very long, but meant to help)

Postby Wolverine on January 3rd, 2008, 3:17 pm

I wanted to edit my last post after posting, but couldn't figure out how.

After reading my post, I realized it was stupid of me to suggest that it is silly for us to try to figure out the cause of this syndrome. Since the doctors seem not to know much about it, maybe that is a great feature of this forum. Thousands of people with this syndrome would have the great input on this with all of our experiences, even though most of us are not doctors. I think this type of discussion is good, when done in the correct format and with the correct logic.

I guess I just didn't like the way people were discussing this. I believe there were very personal attacks on each other. And I also feel there was some definite arrogance and pompousness shown.

That is what really threw me off. People arguing their point like they had hard core proof to stand behind their theory.

Fact is, none of us have proof and either do the doctors. Therefore, almost any theory on the cause of this could be logical. And therefore, stand behind your theory, but don't push off any other like it is crazy.

I never got a BFS dx from 2 GP's, 2 neuros, and many tests. I got a GAD dx. That is fine with me at this point, as it has to be or I will drive myself crazy trying to figure out exactly what I have or what the cause is.

I actually think my BFS and/or GAD is caused by alien abduction and plutonium exposure. But I am going to post this on the ET forum.
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Re: My Story (Very long, but meant to help)

Postby Wolverine on January 3rd, 2008, 3:43 pm

Angie,

FYI, I have seen that website months ago and read it in full. Steve did a great job on this.

Obviously Steve has the most research of anyone here, as well as a doctor, to back up his theory. But the fact is, there are some inconclusive or open ended points to PNH that can't be supported by research, facts or testing, and I think Steve will admit this and has in his website.

I also tend to lean towards PNH for the cause of my symptoms as Steve's website makes complete sense to me. But I am also fairly convinced that mine was triggered by anxiety. Therefore, I support the PNH/anxiety theory. I also believe that possibly hundereds of milllions of people have PNH or some sort of deviation of it. I just don't think most people worry about it. I think most of us here are the type of people to focus on the crazy things that happen to our bodies and therefore, we make it worse. Fact is, the body is very complex, and because of that most people have crazy things happening to them. But in the crazyness of everyday life, they do not focus on them or even notice them. I know that now since I don't focus on my symptoms anyomore, many of them have gone away or have greatley subsided. And I think this is how my body was before I decided to google twitches a couple years ago.

I know when I was going through what I call "the high anxiety phase of this syndrome" I asked almost everyone I knew (probably over 100 people) if they had any of my symtpoms. Although I didn't document or log this, I believe everyone had at least one of my symptoms. Some of them had many of them, including my wife. But my wife is not a hypochondriac like I tthink many of us are, including myslef. Therefore, she did not pay much attention to them.
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Re: My Story (Very long, but meant to help)

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