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Posted 5/4/2013 1:57 PM (GMT 0)

First of all I have been a medical researcher for over 40 years – I have had severe fibro, recovered and now have it worse than ever. I did have about 20 years pain free. It came back this time after a long spell of anxiety and a major stressful event – I had a potentially terminal diagnosis that was wrong.

All the current research shows that fibro is a dysregulation in the nervous system/brain. There is nothing wrong with the muscles and soft tissue. It is essentially a mind/body issue of a nervous system stuck in sympathetic dominance.

So why do I never seen members of their doctors focusing on this?

All these other treatments like diet and so on only address the far reaches of symptoms and most don’t even do that. At best many are placebo which is good but not healing.

Then you have the issue of medications. Any well trained pain specialist will tell you that pain medications will make pain worse over time. They down regulate the bodies own pain controlling receptors. Then you have the recently discovered a fact called: neuro-anesthesia. Researchers have discovered that when you drug the brain with chemicals that render it anesthetized it may not have the ability to remember and find its way back to normal.

You also have the issues of tolerance, addictions and neuro-adaptation causing secondary problems.

The fact that so many comorbid conditions that go along with fibro are nervous system mediated helps show the way out of this hell. They are all expressions of a nervous system past threshold, having become deregulated and for many people it starts in early childhood.

The issues of mind/body caused pain have been known for over 100 years. We have hard science showing us how both ancient and modern techniques can balance and regulate the nervous system. I used them last time I recovered and I suspect the reason I am not healing now is that I have not been diligent enough and just don’t want to do the work.

Posted 5/4/2013 2:00 PM (GMT 0)

For some reason this web site made the last post type huge and lost the format so Iam reposting

 

First of all I have been a medical researcher for over 40 years – I have had severe fibro, recovered and now have it worse than ever. I did have about 20 years pain free. It came back this time after a long spell of anxiety and a major stressful event – I had a potentially terminal diagnosis that was wrong.

 

All the current research shows that fibro is a dysregulation in the nervous system/brain. There is nothing wrong with the muscles and soft tissue. It is essentially a mind/body issue of a nervous system stuck in sympathetic dominance.

 

So why do I never seen members of their doctors focusing on this?

 

All these other treatments like diet and so on only address the far reaches of symptoms and most don’t even do that. At best many are placebo which is good but not healing.

 

Then you have the issue of medications. Any well trained pain specialist will tell you that pain medications will make pain worse over time. They down regulate the bodies own pain controlling receptors. Then you have the recently discovered a fact called: neuro-anesthesia. Researchers have discovered that when you drug the brain with chemicals that render it anesthetized it may not have the ability to remember and find its way back to normal.

 

You also have the issues of tolerance, addictions and neuro-adaptation causing secondary problems.

 

The fact that so many comorbid conditions that go along with fibro are nervous system mediated helps show the way out of this hell. They are all expressions of a nervous system past threshold, having become deregulated and for many people it starts in early childhood.

 

The issues of mind/body caused pain have been known for over 100 years. We have hard science showing us how both ancient and modern techniques can balance and regulate the nervous system. I used them last time I recovered and I suspect the reason I am not healing now is that I have not been diligent enough and just don’t want to do the work.

 

Posted 5/4/2013 2:43 PM (GMT 0)
Thanks, Mystic, for sharing all of that and I'm sorry to hear your fibro issues have returned.

about your not wanting to do the work that it would take to try and help yourself, there is a couple very good reasons to try:

So you can be an inspiration to others and how you have helped yourself.

Being the best we can be is the best thing to do for our family and friends.

So you, yourself, can feel better.
Posted 5/5/2013 12:32 AM (GMT 0)
I know that a doctor described it to me as a glitch in the nervous system, but I still have a lot of muscle pain. So I think it does effect muscle and soft tissue. I have been taking collagen and it is helping me. I hope you find what works for you.

Hugs, Karen
Posted 5/5/2013 2:26 AM (GMT 0)
Mystic, thank you. But I have to admit, your post is really scary to me ! After suffering with Fibro + severe IBS the way I did for 20+ years, then basically knocking it "nearly" completely out, for the last few years, I just can't imagine ever living that way again.

For me, it was all about diet and exercise > however, lest you think this sounds too easy, my diet and exercise are ridiculous extreme ! Easy to me, because of my OCD :) LOL ......but seemingly impossible for many.

Karen, of course your body can tell you that your muscles, soft tissue, or whatever are hurting, but it doesn't necessarily mean their is anything wrong with those parts of your body > just the nerves associated with those parts of your body "lying" and saying that their is something wrong.... Do you agree ?

Hmmmm....
Fish
Posted 5/5/2013 2:26 AM (GMT 0)
Yes the muscles hurt but only because the brain is keeping them tight - there is nothing wrong with them
Posted 5/5/2013 3:02 AM (GMT 0)
I don't know if any of you ever played "Gossip" as a kid. You get a group of people in a line. The first person tells the next person in a whisper a sensible sentence. Then it is passed person to person until the last person says what is told to them outloud to everyone. You'd be surprised at how mixed up the sensible sentence gets by the end of the line.

I believe that explains our nervous system. The message starts out okay but as it moves along it gets scrambled and misinterpeted.

Now if only the doctors can figure out how to unscramble the message, then we will find a cure for it. yeah
Posted 5/5/2013 5:54 AM (GMT 0)
Couchtater, I think this is totally plausible. I've wondered about the same things......

Fish
Posted 5/5/2013 12:00 PM (GMT 0)
Chronic over activation starting in early childhood trains the nervous system in arousal and it beleives this is normal
Posted 5/5/2013 8:35 PM (GMT 0)
James? Is that you?
Posted 5/5/2013 8:56 PM (GMT 0)
MysticSoul,

I am wondering why you are not willing to use the techniques you said helped you "recover" from fibro in the past?

Personally, I don't believe there is a cure for fibro...there are things we can do to help alleviate some of our symptoms. Pacing ourself, exercising, eating healthy and getting adequate sleep are just some ways of being proactive.

Fibromites come from all differant backgrounds and have had all sorts of childhood experiances. We all handle stress in differant ways. I really don't know if there is a single common denominator to determine if someone is a candidate for fibro. Yes, it is more common in women, but we are all differant.

Hugs, Robin
Posted 5/5/2013 11:05 PM (GMT 0)
Last time I meditated 20 mintues five to 7 times a day as well as stretching, Tai CHi and gentle walking. I wsa totally crippled and recovered enough to do two hour workouts and run.

I just cant seem to get myself into that much recovery work at this time.

If you dont beleive you will recover you body will believe you and you wont
Posted 5/5/2013 11:42 PM (GMT 0)
I don't think Robin was saying anything about attitudes. If you read through here robin tends to be pretty positive. I think we all tend to get a little aggravated when someone comes along touting some cure and telling us that we just aren't committed enough. We are all different. I've done the strict diets and I exercise every day but my fibro hangs around like a wedding crasher.

It comes across as very judgemental when you come in saying you know all about fibro. You can't. No one knows 100% what causes fibro because the people who get it all go through different events. I'm sure you didn't mean to sound judgemental and hopefully I helped clear things up a bit before this conversation becomes an argument.
Posted 5/6/2013 12:30 AM (GMT 0)
Well, some interesting thoughts there Mystic... and everyone else also.
So, I am guessing that this is the reason my body constantly feels like it is "on edge"? It is like my nerve endings can't shut down, and I am in a constant state of anxiousness? But only physically, NOT mentally? Does that even make ANY sense? It is just soo odd to me, that my body feels like it is almost on an adrenalin rush, but my mine is soo tired.. Just really weird..
But this explanation makes sense. Thanks for everyone's thoughts, they are interesting to ponder :)
Posted 5/6/2013 3:13 AM (GMT 0)
Mystic Soul,

I'm a big believer in doing what we can to help ourselves. Deep breathing, visualization and meditation is something I practice on a daily basis. Relaxation therapy is something I need to do just to keep my stress under control. Less stress = less pain for me.

Positive thinking creates positive action. Acceptance of my chronic conditions did not come easy, but in doing so I was able to start focusing on what I could do to make my life easier. I know it is possible to have a great life...I'm living it. :)

I'm not a medical researcher and do not know what causes fibro.
I only know my body, and I know what helps it. There is no cure, but we all can do what we can to help ourself feel better.

Wishing us all great days ahead!

Hugs, Robin

PS...Angelic Victory...thanks :)
Posted 5/6/2013 6:38 PM (GMT 0)
Angelic said > I think we all tend to get a little aggravated when someone comes along touting some cure and telling us that we just aren't committed enough.

This ^ is totally true. And this, is the thing that always messes me all up. I HATE to sound like this, as their certainly must be people... even if only just a few, who have gone off the deep end with health and fitness, to the extreme that I have, and for whom this didn't do much for their Fibro.

But then the other side of me says, "Just take a look around, at the general public, with all of the obesity, and general poor health that you see" and it becomes obvious, that many people {most ?} are seemingly just not able, to make the extreme changes needed for good health.... and so many just die that way :(

Hmmmm....

Peace,
Fish
Posted 5/7/2013 8:30 PM (GMT 0)
Mrsbugzy, your description of how you feel - "like my body is almost on an adrenalin rush, but my mind is soo tired," had me nodding my head up and down and tapping my fingers on the desk. Yep. That pretty well fits me to a T, too!

MysticSoul, my doctor told me 20 years ago that Fibro was "functional, not structural," so I don't think this thinking is really new, at least with some in the medical community.

I hope you can summon up the wherewithall to do what you need to do to feel at least somewhat better.

Debbie
Posted 5/7/2013 11:36 PM (GMT 0)
Myself09...

I would bet a million dollars that is the same member as James9393 and I hope that a Moderator and/or Peter will look into this..

It's just WAY too coincidental that MysticSoul's thread says things this:

First of all I have been a medical researcher for over 40 years – I have had severe fibro, recovered and now have it worse than ever.

 

They are all expressions of a nervous system past threshold, having become deregulated and for many people it starts in early childhood.

And then James' posts would say things like this:

I have been a medical journalist for many, many years and because of this I read lots of medical journals. I am also an extreme fibro sufferer that has recovered in the past – and now back worse than ever.

 

AS starts before you are born and we each have threshold that once we go over we have stress disorder symptoms


It's too similar with the same cut/paste threads as James would do as well as the "lingo"...

Sorry, but it is against forum rules to be posting with more than one name. James hasn't been back to the boards since the end of March and then all of a sudden MysticSoul started posting again.

I have alerted the Mods and feel free to delete this post of mine if needed..

Posted 5/8/2013 12:44 AM (GMT 0)
Yes, the writing style is the same, with the same kind of syntax and mistakes. Also, the large font posting to begin with raised a red flag for me, even before I read the post.
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