Fibromyalgia: The pain is in the brain

11463“Memory, the warder of the brain”, William Shakespeare

This is it!!! In my view this is the most significant in-sight I have had about the pain of fibromyalgia. It has been a long and interesting journey beginning with my book in which I laid the foundation about why women are more prone to developing FMS and my conclusion that it is actually caused by an over-aroused nervous system. However, while this was the first step, and the primary one, more has been revealed to me and I am very excited over the unlimited hope there could be for us all. I still don’t have all the answers and it may be that I am presenting information that is not quite accurate, but it has been a steep learning curve and requires much un-learning, which is said to be more difficult than learning. It all began with my physiotherapist, Nick Matheson who brought me to a path which I had never travelled down before, that is, to explore the relationship of pain and the brain, rather than looking simply at fibromyalgia as the result of a hyper-aroused nervous system. The journey down this path is not yet complete so I welcome comments from others who are more learned in this domain than I am.

I am not talking cure but at least some cause for not feeling completely hopeless. Let me begin with a very brief discussion about the nervous system and THE BRAIN. Although not an easy task, I believe it is really possible to train the pain away from our brain. Maybe not forever, but certainly more often than we do now. Aha! I have already given away the conclusion without explaining how I reached it. Here we go now. There are approximately 100 billion nerve cells in the brain which is amazing considering that it weighs only about 3 lbs. The complexity of this is mind boggling! (Pun intended). The brain is a large network of interconnected neurons and the communication that takes place between them. A synapse is the connection between two neurons. Important information is filtered through to consciousness and it may amplify the signal to hyper-awareness and hyper-algesia can develop. This is a heightened awareness of pain, which afflicts those of us with fibromyalgia.

The spinal cord and the brain make up the Central Nervous System. The brain takes messages to the Peripheral Nervous System which controls limbs and organs of the body. Within this system is the Autonomic Nervous system which affects the Sympathetic and ParaSympathetic Nervous Systems. Now here are the relationships between fibromyalgia and these two last systems in particular. The Sympathetic system is the ‘fight or flight’ warning which secretes too much adrenalin and cortisol (found in the adrenal glands on top of the kidneys) in those of us with fibromyalgia, that is, the brain keeps repeatedly warning this system to be fearful. Our nervous systems become hyper-aroused and freezing occurs, which is another aspect to the fight or flight concept. The brain does not allow the Parasympathetic system to do its proper job of ‘rest and relaxation’ and then work to maintain a balance between the two systems. But we can retrain our brain to overcome this chronic hyper-arousal! That is the wonderful news that is exciting to neuroscientists  and psychoneurologists who have uncovered the plasticity of the brain. New emotions can be learned which is not any different than learning a skill like playing chess or tennis. It requires time and discipline but with practice the brain is built to allow us to train for positive emotions, rather than the painful ones that plague sufferers of fibromyalgia.

Here is a conundrum: what, in fact, is the difference between the brain and the mind? Are they the same thing? As usual I ask more questions than I answer, but this one feels like it is important and I can’t really provide the answers. Nick says that “the mind emerges as the function of the physical structures”.  But, in fact, it might even be plausible to suggest that here isn’t even a mind, since it cannot be seen, and all that there may be is only a brain! In the perspectives I have read  the mind is our experiences and the ability to become aware of such things as our surroundings. It is our consciousness and our thoughts. Within this view the mind comes after the brain. It embraces the higher functions of the brain  such as our personality, reason, memory and emotions. So how about us finding ways to circumvent the mind and focus on the brain itself before it gives those messages of pain (or in fact, to give different messages) to the mind? Or even more daringly how about suggesting that the mind is non-existent and maybe we should be concentrating only on the brain, which does those functions that are said to be in the mind? The brain itself is biological matter and can be found and touched. The mind cannot be seen by anyone, nor is it biological. It reminds me that when we hear about the body/mind connection or body/mind/spirit what we are actually talking about is actually more concrete. Neither the mind nor the  spirit can be seen or touched. I prefer instead body/brain/emotions; in this triad only emotions cannot be seen or touched but they can actually be measured in some way. The body and the brain are tangible. It is those biological aspects of pain which we hope to change so that the brain receives different messages than they have had; ones that bring about more hopeful and happier emotions.  I recognize that there may be criticisms about letting go of the concept of a ‘mind’ and instead focussing only on the brain. This will be so particularly in the Buddhist tradition which suggests that there is a distinct difference between the brain and the mind (and spirituality which is another nebulous term within this context). Nonetheless I believe there is a more concrete aspect to embrace in this search for the impact of pain on the mind.

The brain has a lifelong ability to reorganize neural pathways and has the ability to change with learning. This is called brain plasticity . The advances in research that have been conducted have revealed that the brain can change in response to experiences. It can be trained by learning new ways of responding rather than the constant reacting to stimuli (particularly to the real or perceived needs of others) which is common in fibromyalgia . It isn’t easy but with  awareness it can be done! In short, the brain is not static; it can be retrained. The pattern of our overly empathetic emotions which appear to be solidified within us  (for those with fibromyalgia) can be trained (changed) by the brain to differentiate between necessary compassion and empathy responses and overlyempathetic reactions to others (as in being an ’empath’), to that which is more realistic. The anxiety and stressful emotions which plague our every day lives are in our  brains but can be retrained to send different messages to become happy and peaceful , while minimizing the overstimulation of the adrenals, thereby reducing pain  (in the brain). Rather than repeating these same patterns of responses to pain brought about by stored memories, new neural pathways can bring about needed changes to our thoughts and emotions.

It sounds so easy. It isn’t, but the work of such people as Jon Kabat-Zinn (Full Catastrophe Living), David Butler and Lorimer Moseley (Explain Pain), Craig Hassed (Know Thyself), Richard Davidson ( his work on the regulation of emotions) and Daniel Amen (Change Your Brain), Norman  Doidge (The Brain That Changes Itself), Sandra and Matthew Blakeslee (The Body Has a  Mind of Its Own) among many others who built upon the work of earlier neuroplasticians Aleksandr Luria, Michael Merzenich, Paul Bach-y-Rita has led me to believe that there are strategies which we can employ that will help in this retraining process. It takes hard work and discipline. We are the ones we have been waiting for. No one else can do this work for us.

It is the work of Diane Jacobs and Nick Matheson (physiotherapists) which has recently brought me to these in-sights, although Peter Goodman, as an RMT, and psychotherapist (and now an osteopath, and expert in this domain as well), many years ago first started me thinking of these issues. However, brain research is such a fast growing science that new revelations are changing the way scientists are thinking every day and it isn’t easy to keep up. For those of us who are not physiologists or well schooled in that discipline often all of these findings are not easy to understand. Furthermore, although I have been toying with these ideas for quite some time, what I present here is an overly simplistic view of the complex physiology of the brain. Neuroplasticity, brain mapping, interconnectedness of various parts of the brain with the body , a more in-depth understanding of the difference between the mind and the brain (if indeed the mind is an actual entity) and more comprehensive knowledge about brain science are a bit beyond me at this point.  The work of Dr. Bud Craig and interoceptive pathway fits well with the pain of fibromyalgia. Much of his work is difficult for me to understand but I found an article of his from The Wellcome Trust on “Mapping pain in the brain” that is a bit easier to read. I am told that neuroplasticity is my ‘friend’ and that it requires novelty, attention and repetition to change the brain.  Or as the Buddhist Kalu Rinpoche  has suggested:  “Take a simple activity that requires attention but not much intellectual effort, and do it again and again”. That, by the way, is why I have taken up the new project of hand sewing a quilt, something I have never done before. In fact, it might not require more understanding of the brain physiology at all on my part, but rather constant discipline, attention moment to moment to my breathing and remembering to move my body!

I quote here from Diane Jacobs who has given me permission to do so, and who says that “the aim is to increase the ability to self regulate”: 1) Reconceptualize the problem. 2) Help the nervous system to calm itself down 3) (Employ) Psychological Techniques. One of her important pieces of advice is to remember that hurt does not equal harm and this is important for those of us who have persistent pain which changes in location and nature. “Letting pain be our guide actually increases our risk of developing ongoing pain-related anxiety and avoidance”, Jacobs writes. We must  learn techniques such as  mindfulness-based approaches, reframing our stories, and challenge assumptions to unfreeze our responses to chronic pain. Similar to Kabat-Zinn’s clinic in the US clinic, Hassed’s work in the medical school in Australia has been very progressive in bringing about changes in medical curricula, so hope is building that physicians as well as other health professionals will help us to help ourselves.

Most importantly, it is diaphragmatic breathing which remains one of the most significant ways of changing the image and stories of pain within our brains . Keeping an activity diary will help us to determine patterns over time and “you will have charted your own brain’s neuroplastic capacity plus your own determination”, says Jacobs. Above all, “motion is lotion” and movement is crucial to our well being. Using our bodies to train our brains means that there is indeed a connection between body/brain/emotions. It is not hopeless to live with fibromyalgia. Maybe we can’t cure it but we can learn ways to avoid catastrophizing as our constant reaction to each new pain, or the old pains that never seem to leave. As Kabat-Zinn has written:” Being told that you have to learn to live with pain should not be the end of the road- it should be the beginning”.

6 comments

  1. Kimberly says:

    Barbara, I can see you’re on to something here. I’m not much of a reporter/journalist on my findings. I simply redirect what I find for others to look into. I’m not one to re-invent the wheel. So, I shall say that I’m in agreement with what you share here. I sort of already came to this conclusion in that the brain interprets everything as pain, yes, because of an overactive nervous system. I’ve discovered by using very powerful magnetic therapy I can cut off those messages to the brain allowing rest to an area that’s over-activated. Thanks for your lay person insight!

  2. Nick Matheson says:

    Hi Barbara,

    “Using our bodies to train our brains means that there is indeed a connection between body/brain/emotions.”

    This is exactly what we were talking about today and which you will discover many more pearls in the Blakeslee book. They describe how the body is in fact part of the mind. Jeffrey Schwartz also writes well on how to use the mind to change the brain. You are on the right track. Keep on keeping on!

    Nick

  3. Barbara Keddy
    Barbara Keddy says:

    Thanks Nick. I have been reading all afternoon. The books you recommended: The Brain That Changes Itself by Norman Doidge and The Body Has a Mind of Its Own by Sandra and Matthew Blakeslee are wonderful and helping to clear up some of the questions I have. I keep alternating between the two and (happily) can’t seem to decide which one is better. There is so much to learn and re-learn!The process is on-going! I am happy that you have led me to this path. It does take discipline now on my part. The journey continues.
    Barbara

  4. Jennifer says:

    Hi. I am a 26 year old female in the process of being diagnosed with fibromyalgia. This has taken such a toll on my life. I was an active young woman. I have a career, a 3 year old, an amazing fiance and I want more children and the pain is not getting better. I have been to a specialist who does this brain based therapy. They said 4-5- months and i could be cured. I am trying to research before i get into something that will 1.) Possibly not work 2.) Cost a lot of $. Treatment cost around $5000 supposedly but the doctor is supposedly cutting me a deal for $4000. Has anyone attempted this? I am so scared to be put on the medications that are used for fibromyalgia because i know there are horrible side effects and i do not believe i could take the medications while being pregnant. I cannot bear to imagine the thought of having to experience this pain forever. Everyone says stress makes it worse but how can I not stress? I am young and should be at the prime of my life about to be getting married and having a wonderful family and future and now on top of the average day stress i must find a way to deal with this horrible pain that doesnt seem to go away and its impossible to get anyone without it to understand what you are experiencing. I HOPE SOMEONE CAN OFFER SOME ADVICE AND DIRECTION because i am so lost with this. tHANK YOU,

  5. Barbara Keddy
    Barbara Keddy says:

    Hi Jennifer: I am very surprised hearing about this specialist who does this brain based therapy and charging so much money for it. I would look into this much more carefully before undertaking this ‘therapy’. It would seem that it is based upon strategies that I have written about in several of my blogs, in particular mindfulness meditation combined with movement like QiGong or Tai Chi or yoga, proper diet and mild exercise. Read some of the books I have shown on some of the blogs too. Treating fibromyalgia by changing the brain is probably the only way to reduce the pain other than through medications or in conjunction with medications, but I believe WE are the only ones who can help ourselves in this regard. You are young and the chances of reducing the pain at an early age are much greater than at an older age. But, even then it is not totally hopeless. I have no idea who this specialist might be nor what his approach consists of, nor how he(?) can say you will be ‘cured’. Deep breathing is very important and I can tell you are in a high anxiety state which always makes the pain worse and results in shallow breathing. Take time to consider your options and calm your hyper-aroused nervous ssytem. I wish you so much good luck with your future marriage and handling this dis-ease.
    Regards, Barbara

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