Fibromyalgia and Brain Behavior Questions

May 6, 2010 by Lisa

This is an email question I received from a woman about my boook. She gave me permission to repost it here.

Hi Lisa,

I’ve ordered and read most of your book after coming across is on the web when searching for Fibromyalgia recovery.
I was never formally diagnosed as I didn’t bother going to a Rheumatologist (but when first feeling the symptoms I did go to see about 4 doctors all telling me nothing is wrong with me).

Of course I knew there is. My body’s behavior wasn’t as I knew it all my life. I think I’m not among the most severe cases, but enough to make me miserable and very frightened (at first I had a horrible flair every week and a half, tingling and burning sensations and all sorts of creepy stuff).

When I searched for answered I can across a friend who was a acupuncturist that was the first to say Fibro is a syndrome that generates individually in every person and that it originates due to an imbalance of the stress hormones in the body. I then came across DR drylands web site (a working and thriving fibro expert Rheumatologist) and read his book “The Fibromyalgia Solution” (I highly recommend it).

He claims that after years of research he’s done on the subject, this syndrome happens due to the fight or flight response that overwhelms the body with stress hormones, and leads to an imbalance of the stress chemicals in the body, with an big emphasis a depletion of dopamine, the chemical that is supposed to regulated the body’s different organs after the adrenalin rush and soften the body sensation when in danger. When lacking it, the nervous system will amplify every process the body may be involved in or any sore muscle we might have.

He says the way to reverse fibro is only by indentifying the underlying causes that trigger the fight or flight response (similar to what you say). That made a lot of sense to me as I did suffer from panic attacks exactly prior to first having the symptoms. I think his theory is an umbrella for all other theories concerning the syndrome (for example, of course by keeping more fit, the muscles are likely to be much less sore even if the sensation are amplified, the pain won’t be much of a concern, as in regular fibro-free bodies). I really think this is the theory that will ultimately lead to solving this syndrome, and the light at the end of the tunnel can be seen.

The thing I’m a bit concerned about is, what if the brain just learned the behavior of feeling unsafe, cause that’s what happened for too long? And the memory registered and can’t be “deleted”? can the mental brain memories be reversed ??? also I wanted to ask you: you refer to yourself as cured, but you say in the book that you feel good 95% of each day. What does that mean? That can also imply that you are doing a good job of managing the symptoms, but they still arise every now and then.

In wishes of good physical and mental health, and THUMBS UP FOR DOING A GREAT JOB ON THE BOOK.

Thank you so much for writing me. I love, love, love what you have told me. I can’t wait to read the Fibromyalgia Solution. I pieced my theory together over the course of 6 or 7 years after reading everything I could get my hands on – more of it about my emotions than about my pain – because at some point it became obvious to me that what was going on in my head that lead to the extreme emotions was the cause of my pain.

So thank you. I sometimes find books that state what I know, but I need to start building a library, and they are not as frequent as I would like, so I am so glad to be pointed to one that sounds so RIGHT ON.

You asked

The thing I’m a bit concerned about is, what if the brain just learned the behavior of feeling unsafe, cause that’s what happened for too long? And the memory registered and can’t be “deleted”? can the mental brain memories be reversed ???

Well, I don’t think the memories can be reversed or deleted, cuz all my issues are still there to be dredged up again if I so choose to go down that route.

What I did, was I started building some new ‘grooves’ in my brain, and following them as much as possible. I started finding times to feel safe and secure and relaxed and calm and then basking in those feeling so I was more used to them. So gradually it became easier to find even when I was stressed.

So eventually, there was another choice in my brain. And even though I sometimes go down the ‘freak out’ path, I never ever go down as far as I used to, and I choose it less and less often.

I am able to recognize and choose the ‘let’s calm down – it’s ok’ path more often and explore it deeper every day.

But I have to make it a priority, and I had to do some major work in my brain and it did take a while. By work I mean I had to take on some new opinions about life and what happened to me. Like, I had to realize that I have many things to appreciate in my current life that wouldn’t be here today if it weren’t for the abuse I suffered.

That option wasn’t open to me when I was stuck in fear, but as I took the route of trying to feel better, trying to feel better, trying to feel better, I could see that a little bit. And once I could see it a little bit I could see it a little more. And I am not totally 100% to the point of being happy about what happened to me that made me feel so unsafe for so long, but when I am, I will finally be totally free from it. It will have no power over me ever again and my life will be sweet. Imagine the power in that.

There were a few philosophies that helped me with this, and byron katie’s was one of them.

you asked

also I wanted to ask you: you refer to yourself as cured, but you say in the book that you feel good 95% of each day. What does that mean? That can also imply that you are doing a good job of managing the symptoms, but they still arise every now and then.

I am cured. I don’t have fibromyalgia anymore. What I do have is a sensitivity to what’s going on in my muscles and fascia and a tendency to ‘carry my burdens’ there. If I get really, really upset and I stuff it or don’t realise what is going on, my neck can get sore immediately.

If I take the hint and turn internally to figure out what my issue is and do the work to smooth it out and relax, my neck can release instantly. I mean INSTANTLY. It really amazes me sometimes. I’ll feel something that should send me running for the pain medication and a nap, and if I can just let it go or feel better about it, my muscles can feel just like they did before.

I also have some old trigger points or something in my left front groin and abdomen that are just hanging in there and still hurt sometimes.

I wrote that article in early december 2009. Yesterday that pain flared up again (I stopped giving it daily treatment a few months ago) because I have started strength training again and so last night I had all the heat packs stuffed in my pants and this morning I am treating it every so often again. It’s smaller and less intense, but it’s still there.

… The big difference is though, that it doesn’t disrupt my life. I am caring for my muscles anyway (stretching, working out, a bit of self-trigger point massage) every day. I can still work and fuction and I don’t take pain killers. It’s not that bad.

So, I’m so glad you like my book. Thank you for your message – do you mind if I post this on my website? I would not include your name or email address. I think it would be quite helpful to people who are looking for it.

thanks, Lisa

Hi again,
If i understand correctly these issues you have with the tender points were there BEFORE the fibro started and you are still dealing with them?

I truly wonder if I can go back physicaly to person i was before the symptoms started. THAT would mean a true recovery to me. I had the panic attacks at a time when i had some ongoing medical issues, but these attacks weren’t going on all my life, so I’m kinda angry with myself for not calming down when i had the chance too. If i only knew. Funny people don’t talk about this syndrome, and they should, bringing it to the awareness of the public in order to prevent it from happening to people.

What i meant by “deleting” memories, is not deleting life experiences. i meant that the brain can register an event as a trauma, and like other traumas, its hard to reverse.

Another site you should check is the “ashtok gupta” program. It talks about the flight or fight response as well and there is some insights to be learnt there too.
And another book called “Healing Fibromyalgia” – look it up at Amazon. All written by MD’s specializing in fibro.

I forgot to tell you, im 33 years old, don’t have children (yet). But hope that the fibro won’t prevent this from me.
I truly hope this can in sometime from now, just be a memory i learnt from.

And of course, you can post me mail on your site!

This area in my groin is not a tender point. It’s a mass of something – scar tissue and trigger points I think, caused by chronic tension and maybe by some abuse I suffered as a child.

I’m sure tender points in fibro are caused by trigger points and scar tissue, but they aren’t the same thing.

When I was 22 or so I had had horrible pain in my right leg for years that was diagnosed as sciatica. when I stopped driving so much the sciatica pain eventually died down and went away, but 12 years later I discovered the mass on the outer side of my right calf. I think that was what was creating my sciatica pain and after I stopped driving it went dormant – so it was still there but didn’t cause me active pain anymore.

I think this contributed to me eventually developing fibromyalgia. i think fibromyalgia is a cumulative disorder of the fascia and this massive disruption in my fascia contributed to an overall issue.

I never noticed the mass in my left groin until year 3 of my recovery. It never caused me any active pain but it was probably there and getting worse since childhood. Sometimes these days I realize that spot in my groin can cause pain in my back and side and stomach – but I know it’s there so I can treat it. Imagine in the old days when I didn’t know – talk about not being able to get help.

I wish you could find a way to not be angry at yourself You can only do what you can do, right? I know that when you are all caught up in the middle of it, it seems impossible that any of this could be good or have meaning, but I know you can get better. and I hope it happens soon for you.

thanks for letting me use our dialogue

One last question:

I think I have restless legs syndrome. Most annoying constant feeling of electric flow in my foot (the part where you step on). You don’t refer to that in the book although you say you had it in your site. I first had it in both feet. Now only in one. I read some place it’s the flight or flight response encouraging us to get up and do something instead of lay down or sit, and it’s the depletion of Dopamine that makes us FEEL IT. What do you find is the cause and what are possible treatments for relief? Did you have it all the time, or only occasionally.

And you should really check out the “Ashok Gupta” program. He says the brain has been rewired due to an initial set of the fight or flight response and due to the pain it causes, it self-perpetuates, but it can be fixed(re-trained again by mediation and other stuff as NLP if you know what is it..)

I did check out the Ashok Gupta program and discovered I ran across this in year 3 or so of my recovery. I was recovering so well myself that I didn’t feel a need to buy the program but I might have considered it in year 1 or 2 when I was still looking for answers. Thanks for re-pointing it out to me though. I may start recommending it on my site.

I have no doubt that what he says is true, but I have my own theories about the restless leg to kind of lay on top of that. Maybe not theories but more … personal experience.

So, I still occassionally get this restless leg thing and my 7 year old son even gets it sometimes, but he can sleep through it. I just know he has it because he kicks his legs while he’s sleeping sometimes and I can correlate it to things that go on during his day. If he gets REALLY wound up during the day and never winds down, he kicks his legs at night sometimes.

So, in my mind, no matter what else causes it or leads up to it, ultimately it’s a ‘wound-up’ nervous system thing. I rarely get that ‘feeling’ anymore, but sometimes, when I’m wound up and not taking care of myself over a few days or weeks, I do get it.

The author of I Can Make You Sleep says that if you move your leg purposely when you feel the sensation you can reset your nervous system that way.

I found that the restorative yoga I do is definitely cumulative, and all my issues calmed down, calmed down, calmed down before they totally went away, but even now, if I don’t stretch and I don’t pay attention to my emotions (using them like alarm bells of too much stress) then I can get tight and sore and my legs might even be restless at night.

I do know what NLP is and I totally believe it can be effective and that the brain can be rewired There’s also EFT and NVC (non violent communication) that can do the same things.

Do you ever stretch your feet and ankles? One thing that I get now frequently is a painless muscle twitch in all my muscles. I get sometimes between 20 and 50 of them a day. I get them in all of my muscles – like my abdomen muscles and my arm muscles and my chest muscles and my thigh muscles.

It feels to me like my muscle is giving a big twitch to help itself relax and stretch out. These started in year 3 of my recovery, and haven’t stopped since. They are more prevalant when I am doing some real focused stretches in a new group of muscles or when I don’t do yoga for a few days and am tighter than usual, and then I get to do yoga and relax. For the next few days I will notice more twitches. I also notice them right before I fall asleep as my body is relaxing.

They are not annoying or irritating or painful at all. To me they indicate healing and relaxation and I love them.

My theory about them is that they are a natural function of everybody’s muscles to help heal and relax them. Some people may not feel or notice them, but most people probably don’t get them, because all their tissues are too glued together and tight, so the muscles aren’t able to twitch.

Sometimes I wonder if the restless leg sensations are the muscles trying to twitch but being unable to for whatever reason.

So, the reason I asked if you ever stretch your ankles or feet is because I never did, and when I started going to yoga class we started stretching our feet and mine were so incredibly tight it wasn’t even funny. I never would have even realized or thought before that i need to stretch my FEET. Even my toes were tight and painful when directly accessed. So, whenever I would find and stretch a new spot like this, the twitches would start in this area.

like you, i have no doubt in my mind that what ashok says it’s very true and i’m considering buying his DVD’s as i believe it can help A LOT.

Regarding the restless legs, i sleep through them and don’t kick or anything like that at night. once i get into bed and start falling asleep the feeling goes away. and i don’t feel it when waking up in the morning as well, just through out the day sometimes. I think it is connected to an nervous system in overdrive (it means the fight or flight is not quite shut off), and an intersthing thing i found is that when i meditate, it just goes away. immedietly that is!! so i kinda think it DOES have something to do with feeling alert in someway.

I do wish you the best of luck withyour site. All you can find on the web is only pessimistic stuff that gets you down, people that haveonly bad things to say, and i wonder where all the recovered ones are, not saying a word (and i’m sure there are some recovered ones!)

What can i tell ya.. Ithink it’s great we didnt turn to certain kind of medication as i think that would do the opposite of recovery.

I agree with you. And meditating is gold I agree.

I know there are recovered ones out there too .. but I guess they are too busy living life ha ha.

Highly Recommended: 30 Days to Feel Better From Fibromyalgia

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