Fibromyalgia

[Guest guest]

Hi there..

For some reason I did not see the reply from Pete on

your question regarding Fibromyalgia. Could you

forward to me his replies, my wife suffers with FM and

we are considering treatment.

Thanks!

Joe

--- ronaway7 wrote:

> Pete, how many does it take you on average to

> resolve fobromyalgia, or

> at least to get huge gains ? Greetings, Roland.

>

>

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[Guest guest]

Joe,

You can always go to the braintrainer homepage (http://groups.yahoo.com/group/braintrainer ) and click the Messages link to see anything that has been sent almost from the beginning of the group; even search for items of interest.

Here's the link to the response (I think) you are looking for:

http://health.groups.yahoo.com/group/braintrainer/message/21999

Pete

For some reason I did not see the reply from Pete onyour question regarding Fibromyalgia. Could youforward to me his replies, my wife suffers with FM andwe are considering treatment.

.. -- Van Deusenpvdtlc@...http://www.brain-trainer.com

305/433-3160The Learning Curve, Inc.

[Guest guest]

Joe,

You can always go to the braintrainer homepage (http://groups.yahoo.com/group/braintrainer ) and click the Messages link to see anything that has been sent almost from the beginning of the group; even search for items of interest.

Here's the link to the response (I think) you are looking for:

http://health.groups.yahoo.com/group/braintrainer/message/21999

Pete

For some reason I did not see the reply from Pete onyour question regarding Fibromyalgia. Could youforward to me his replies, my wife suffers with FM andwe are considering treatment.

.. -- Van Deusenpvdtlc@...http://www.brain-trainer.com

305/433-3160The Learning Curve, Inc.

[Guest guest]

I find this response to be bordering on the old thought that fibromyalgia isn't a true physical/medical condition, but rather a psychological coping mechanism of some kind. The assertion that people with fibromyalgia are those who have "lost the ablity to control themselves", is outdated at best. Research has come far to prove otherwise. Did anyone else find this premise naive or offensive?

I don't use the TLC method for neurofeedback training so I'm not sure what you mean by the "tone" strategy. But my question is, if it takes a decade or two for someone to reach the level of somatic involvement with chronic pain or fibromyalgia, how do you explain a young adolescent diagnosed with fibromyalgia (or chronic pain processing disorder) that is unable to enjoy shopping with her mother and sister for more than an hour? Shopping is usually something that any young teenage girl would love to be doing, but this one usually ends up lying down in the dressing room floor from extreme fatigue, weakness, and pain.

People with fibromyalgia may be a "very draining population", but they are indeed peole who have had to struggled long and hard to fight these types of misconceptions from misguided or stubborn medical professionals.

To: braintrainer From: pvdtlc@...Date: Mon, 25 Feb 2008 13:25:49 -0300Subject: Re: Re: fibromyalgia

Roland,

It depends on the client and the EEG pattern. It usually takes a decade or two for someone to reach the level of somatic involvement involved in chronic pain or fatigue or fibromyalgia. They have often become very controlling but have lost all sense of ability to control themselves. They may have developed significant secondary gains: benefits that they actually get from having fibromyalgia, which they can't admit easily to themselves but which they resist giving up.

If you can identify the underlying tone strategy(ies) and find one that the brain will give up fairly easily, and if you can help the client to decide that they DO have control in their lives and choose to exercise it, then I'd say 30-50 sessions is pretty reasonable to result in changes in the pain and greater ongoing contact with the emotional material and current feelings that are the pathway to healthy living. I usually put a lot on the line right up front to try to separate those who truly can/will change from those who who can't/won't (and these people are absolutely sure that they DO!) That saves a lot of time and improves success rates with what can be a very draining (and very rewarding) population.

Pete

On Mon, Feb 25, 2008 at 1:12 PM, ronaway7 <rolandvermenthotmail> wrote:

Pete, how many does it take you on average to resolve fobromyalgia, or at least to get huge gains ? Greetings, Roland.

..-- Van Deusenpvdtlcgmailhttp://www.brain-trainer.com305/433-3160The Learning Curve, Inc. Helping your favorite cause is as easy as instant messaging. You IM, we give. Learn more.

[Guest guest]

I find this response to be bordering on the old thought that fibromyalgia isn't a true physical/medical condition, but rather a psychological coping mechanism of some kind. The assertion that people with fibromyalgia are those who have "lost the ablity to control themselves", is outdated at best. Research has come far to prove otherwise. Did anyone else find this premise naive or offensive?

I don't use the TLC method for neurofeedback training so I'm not sure what you mean by the "tone" strategy. But my question is, if it takes a decade or two for someone to reach the level of somatic involvement with chronic pain or fibromyalgia, how do you explain a young adolescent diagnosed with fibromyalgia (or chronic pain processing disorder) that is unable to enjoy shopping with her mother and sister for more than an hour? Shopping is usually something that any young teenage girl would love to be doing, but this one usually ends up lying down in the dressing room floor from extreme fatigue, weakness, and pain.

People with fibromyalgia may be a "very draining population", but they are indeed peole who have had to struggled long and hard to fight these types of misconceptions from misguided or stubborn medical professionals.

To: braintrainer From: pvdtlc@...Date: Mon, 25 Feb 2008 13:25:49 -0300Subject: Re: Re: fibromyalgia

Roland,

It depends on the client and the EEG pattern. It usually takes a decade or two for someone to reach the level of somatic involvement involved in chronic pain or fatigue or fibromyalgia. They have often become very controlling but have lost all sense of ability to control themselves. They may have developed significant secondary gains: benefits that they actually get from having fibromyalgia, which they can't admit easily to themselves but which they resist giving up.

If you can identify the underlying tone strategy(ies) and find one that the brain will give up fairly easily, and if you can help the client to decide that they DO have control in their lives and choose to exercise it, then I'd say 30-50 sessions is pretty reasonable to result in changes in the pain and greater ongoing contact with the emotional material and current feelings that are the pathway to healthy living. I usually put a lot on the line right up front to try to separate those who truly can/will change from those who who can't/won't (and these people are absolutely sure that they DO!) That saves a lot of time and improves success rates with what can be a very draining (and very rewarding) population.

Pete

On Mon, Feb 25, 2008 at 1:12 PM, ronaway7 <rolandvermenthotmail> wrote:

Pete, how many does it take you on average to resolve fobromyalgia, or at least to get huge gains ? Greetings, Roland.

..-- Van Deusenpvdtlcgmailhttp://www.brain-trainer.com305/433-3160The Learning Curve, Inc. Helping your favorite cause is as easy as instant messaging. You IM, we give. Learn more.

[Guest guest]

I find this response to be bordering on the old thought that fibromyalgia isn't a true physical/medical condition, but rather a psychological coping mechanism of some kind. The assertion that people with fibromyalgia are those who have "lost the ablity to control themselves", is outdated at best. Research has come far to prove otherwise. Did anyone else find this premise naive or offensive?

I don't use the TLC method for neurofeedback training so I'm not sure what you mean by the "tone" strategy. But my question is, if it takes a decade or two for someone to reach the level of somatic involvement with chronic pain or fibromyalgia, how do you explain a young adolescent diagnosed with fibromyalgia (or chronic pain processing disorder) that is unable to enjoy shopping with her mother and sister for more than an hour? Shopping is usually something that any young teenage girl would love to be doing, but this one usually ends up lying down in the dressing room floor from extreme fatigue, weakness, and pain.

People with fibromyalgia may be a "very draining population", but they are indeed peole who have had to struggled long and hard to fight these types of misconceptions from misguided or stubborn medical professionals.

To: braintrainer From: pvdtlc@...Date: Mon, 25 Feb 2008 13:25:49 -0300Subject: Re: Re: fibromyalgia

Roland,

It depends on the client and the EEG pattern. It usually takes a decade or two for someone to reach the level of somatic involvement involved in chronic pain or fatigue or fibromyalgia. They have often become very controlling but have lost all sense of ability to control themselves. They may have developed significant secondary gains: benefits that they actually get from having fibromyalgia, which they can't admit easily to themselves but which they resist giving up.

If you can identify the underlying tone strategy(ies) and find one that the brain will give up fairly easily, and if you can help the client to decide that they DO have control in their lives and choose to exercise it, then I'd say 30-50 sessions is pretty reasonable to result in changes in the pain and greater ongoing contact with the emotional material and current feelings that are the pathway to healthy living. I usually put a lot on the line right up front to try to separate those who truly can/will change from those who who can't/won't (and these people are absolutely sure that they DO!) That saves a lot of time and improves success rates with what can be a very draining (and very rewarding) population.

Pete

On Mon, Feb 25, 2008 at 1:12 PM, ronaway7 <rolandvermenthotmail> wrote:

Pete, how many does it take you on average to resolve fobromyalgia, or at least to get huge gains ? Greetings, Roland.

..-- Van Deusenpvdtlcgmailhttp://www.brain-trainer.com305/433-3160The Learning Curve, Inc. Helping your favorite cause is as easy as instant messaging. You IM, we give. Learn more.

[Guest guest]

Tammy,

My apologies for having offended you with my comments on fibromyalgia. Reading back over the message I wrote, I think I was respectful of the problem--having worked with it many times myself--but warning of the treatment problems that often arise in working with it. I hope I'm not too stubborn (though I'm sure at times misguided), and I'm certainly not a medical professional.

I freely admit to my prejudice against many things being considered " true physical/medical conditions " . As soon as something like fibromyalgia becomes a " medical " condition, we gain the ability to say, " it's not my fault, " which is a valid benefit. Unfortunately, that carries with it the problem that there's also nothing we can do about it.

A quick look at definitions of the problem came up with " fibromyalgia has been clearly identified as a central nervous system disease. In terms of its diagnosis, it is much more like other chronic pain syndromes, like a migraine headache where you may not have a specific physical finding except for tender points. There is no pathologic presentation, but there is severe pain, and that's the presentation itself. " So there is chronic pain, which no-one who has ever lived or worked with a person with fibromyalgia would think of denying, but as to what causes it, it appears that no-one can really say. Does saying that something is related to stress make it less real or less valid? Not in my world. That's much of what I work with. And in fact, finding that stress underlies a physiological problem has the great benefit that it allows the client him or herself to DO something about it. That's one of the great things about neurofeedback!

In my experience--and it is clearly not as personal or day-to-day as yours has been--when a person experiences pain (or anxiety, or depression or fear, etc.) that is fairly constant and doesn't seem to respond to what they try to do to manage it, it's nearly impossible NOT to experience a sense of loss of control. How I feel seems to me to be one of the most basic and fundamental levels of control I have over myself, and when I lose the ability to manage that, it undermines my entire sense of control in my life. That's not a fault, it's a reality. And people who have suffered with that reality for decades often have a very difficult time letting go of their loss of control, simply because it's woven into their entire experience at a pretty basic level. That's also not a fault. But a trainer who hopes to help someone with fibromyalgia or any of these other chronic issues will be well advised to be aware of those " secondary gain " issues that may block the client from actually doing what they most want to do. That's all I was trying to say.

The concept of Tone problems, and the brain's strategies for dealing with them, is basic to the TLC approach to training. When there is a relatively high and relatively stable level of stress response in one's life over a period of time, the autonomic nervous system--which manages a huge amount of our physiological performance and experience--ends up tilting heavily toward its sympathetic branch, the fight-or-flight response. What is meant as an emergency reaction becomes an ongoing pattern and a number of things happen in terms of how the body reacts. Because there is a strong level of emotional drive coming from the sub-cortical areas of a brain like this, the cortex has to develop a strategy for controlling or dealing with that drive in order to cope in the day-to-day world. In helping a client to unwind the emotional drive issues, recognizing how the cortex has changed to respond to it is very important. Training the cortex to let go of one of these strategies often allows the old emotional material to be released. And even people who have had chronic pain, fatigue, fibromyalgia, anxiety or other issues can be released from them. That's why people train the brains of this population. They can be, as I wrote, both very draining AND very rewarding.

Again, my apologies for having said things in such a way as to offend you. Living with an adolescent with these issues, you have my greatest respect.

Pete

I find this response to be bordering on the old thought that fibromyalgia isn't a true physical/medical condition, but rather a psychological coping mechanism of some kind. The assertion that people with fibromyalgia are those who have " lost the ablity to control themselves " , is outdated at best. Research has come far to prove otherwise. Did anyone else find this premise naive or offensive?

I don't use the TLC method for neurofeedback training so I'm not sure what you mean by the " tone " strategy. But my question is, if it takes a decade or two for someone to reach the level of somatic involvement with chronic pain or fibromyalgia, how do you explain a young adolescent diagnosed with fibromyalgia (or chronic pain processing disorder) that is unable to enjoy shopping with her mother and sister for more than an hour? Shopping is usually something that any young teenage girl would love to be doing, but this one usually ends up lying down in the dressing room floor from extreme fatigue, weakness, and pain.

People with fibromyalgia may be a " very draining population " , but they are indeed peole who have had to struggled long and hard to fight these types of misconceptions from misguided or stubborn medical professionals.

To: braintrainer From: pvdtlc@...Date: Mon, 25 Feb 2008 13:25:49 -0300

Subject: Re: Re: fibromyalgia

It depends on the client and the EEG pattern. It usually takes a decade or two for someone to reach the level of somatic involvement involved in chronic pain or fatigue or fibromyalgia. They have often become very controlling but have lost all sense of ability to control themselves. They may have developed significant secondary gains: benefits that they actually get from having fibromyalgia, which they can't admit easily to themselves but which they resist giving up.

If you can identify the underlying tone strategy(ies) and find one that the brain will give up fairly easily, and if you can help the client to decide that they DO have control in their lives and choose to exercise it, then I'd say 30-50 sessions is pretty reasonable to result in changes in the pain and greater ongoing contact with the emotional material and current feelings that are the pathway to healthy living. I usually put a lot on the line right up front to try to separate those who truly can/will change from those who who can't/won't (and these people are absolutely sure that they DO!) That saves a lot of time and improves success rates with what can be a very draining (and very rewarding) population.

..._,___ -- Van Deusenpvdtlc@...http://www.brain-trainer.com

305/433-3160The Learning Curve, Inc.

[Guest guest]

Tammy,

My apologies for having offended you with my comments on fibromyalgia. Reading back over the message I wrote, I think I was respectful of the problem--having worked with it many times myself--but warning of the treatment problems that often arise in working with it. I hope I'm not too stubborn (though I'm sure at times misguided), and I'm certainly not a medical professional.

I freely admit to my prejudice against many things being considered " true physical/medical conditions " . As soon as something like fibromyalgia becomes a " medical " condition, we gain the ability to say, " it's not my fault, " which is a valid benefit. Unfortunately, that carries with it the problem that there's also nothing we can do about it.

A quick look at definitions of the problem came up with " fibromyalgia has been clearly identified as a central nervous system disease. In terms of its diagnosis, it is much more like other chronic pain syndromes, like a migraine headache where you may not have a specific physical finding except for tender points. There is no pathologic presentation, but there is severe pain, and that's the presentation itself. " So there is chronic pain, which no-one who has ever lived or worked with a person with fibromyalgia would think of denying, but as to what causes it, it appears that no-one can really say. Does saying that something is related to stress make it less real or less valid? Not in my world. That's much of what I work with. And in fact, finding that stress underlies a physiological problem has the great benefit that it allows the client him or herself to DO something about it. That's one of the great things about neurofeedback!

In my experience--and it is clearly not as personal or day-to-day as yours has been--when a person experiences pain (or anxiety, or depression or fear, etc.) that is fairly constant and doesn't seem to respond to what they try to do to manage it, it's nearly impossible NOT to experience a sense of loss of control. How I feel seems to me to be one of the most basic and fundamental levels of control I have over myself, and when I lose the ability to manage that, it undermines my entire sense of control in my life. That's not a fault, it's a reality. And people who have suffered with that reality for decades often have a very difficult time letting go of their loss of control, simply because it's woven into their entire experience at a pretty basic level. That's also not a fault. But a trainer who hopes to help someone with fibromyalgia or any of these other chronic issues will be well advised to be aware of those " secondary gain " issues that may block the client from actually doing what they most want to do. That's all I was trying to say.

The concept of Tone problems, and the brain's strategies for dealing with them, is basic to the TLC approach to training. When there is a relatively high and relatively stable level of stress response in one's life over a period of time, the autonomic nervous system--which manages a huge amount of our physiological performance and experience--ends up tilting heavily toward its sympathetic branch, the fight-or-flight response. What is meant as an emergency reaction becomes an ongoing pattern and a number of things happen in terms of how the body reacts. Because there is a strong level of emotional drive coming from the sub-cortical areas of a brain like this, the cortex has to develop a strategy for controlling or dealing with that drive in order to cope in the day-to-day world. In helping a client to unwind the emotional drive issues, recognizing how the cortex has changed to respond to it is very important. Training the cortex to let go of one of these strategies often allows the old emotional material to be released. And even people who have had chronic pain, fatigue, fibromyalgia, anxiety or other issues can be released from them. That's why people train the brains of this population. They can be, as I wrote, both very draining AND very rewarding.

Again, my apologies for having said things in such a way as to offend you. Living with an adolescent with these issues, you have my greatest respect.

Pete

I find this response to be bordering on the old thought that fibromyalgia isn't a true physical/medical condition, but rather a psychological coping mechanism of some kind. The assertion that people with fibromyalgia are those who have " lost the ablity to control themselves " , is outdated at best. Research has come far to prove otherwise. Did anyone else find this premise naive or offensive?

I don't use the TLC method for neurofeedback training so I'm not sure what you mean by the " tone " strategy. But my question is, if it takes a decade or two for someone to reach the level of somatic involvement with chronic pain or fibromyalgia, how do you explain a young adolescent diagnosed with fibromyalgia (or chronic pain processing disorder) that is unable to enjoy shopping with her mother and sister for more than an hour? Shopping is usually something that any young teenage girl would love to be doing, but this one usually ends up lying down in the dressing room floor from extreme fatigue, weakness, and pain.

People with fibromyalgia may be a " very draining population " , but they are indeed peole who have had to struggled long and hard to fight these types of misconceptions from misguided or stubborn medical professionals.

To: braintrainer From: pvdtlc@...Date: Mon, 25 Feb 2008 13:25:49 -0300

Subject: Re: Re: fibromyalgia

It depends on the client and the EEG pattern. It usually takes a decade or two for someone to reach the level of somatic involvement involved in chronic pain or fatigue or fibromyalgia. They have often become very controlling but have lost all sense of ability to control themselves. They may have developed significant secondary gains: benefits that they actually get from having fibromyalgia, which they can't admit easily to themselves but which they resist giving up.

If you can identify the underlying tone strategy(ies) and find one that the brain will give up fairly easily, and if you can help the client to decide that they DO have control in their lives and choose to exercise it, then I'd say 30-50 sessions is pretty reasonable to result in changes in the pain and greater ongoing contact with the emotional material and current feelings that are the pathway to healthy living. I usually put a lot on the line right up front to try to separate those who truly can/will change from those who who can't/won't (and these people are absolutely sure that they DO!) That saves a lot of time and improves success rates with what can be a very draining (and very rewarding) population.

..._,___ -- Van Deusenpvdtlc@...http://www.brain-trainer.com

305/433-3160The Learning Curve, Inc.