Fibromyalgia is NOT a ‘Disease’! Manual therapists to “help”?

“Names are not always what they seem”, Mark Twain

How to go about convincing experts and the general population that fibromyalgia is not a disease, but a Medically Unexplained Syndrome (MUS)? It is in fact, a dis-ease. It is mysterious in the ways in which it exhibits itself with a vast array of features, but the cause can be explained as an uneasy central nervous system! What is implied in that name? Generally it is ‘sore all over’. Fibromyalgia is a compilation of various symptoms such as pain, fatigue, itching, depression, digestive upsets and such a variety of psycho-social- biological challenges that are almost too numerous to cite. The onset :  occurs in a highly sensitive, anxious person, with a chronically hyper-aroused nervous system, the fearful amygdala of the brain in hyper-vigilant mode, and generally, but not exclusively, is brought on after a traumatic event, such as an accident or surgery, divorce or the death of a loved one and especially such traumatic events as wars.. Its twin is PTSD. Over time muscles and subsequently joints become increasingly painful and the quality of life suffers.

Is there a type of person more prone to fibro? Well, an anxious personality is a predisposing factor. Whether or not it is a personality trait that one is born with or acquired is up for debate. The person is a ‘type’, but not all anxious persons have fibromyalgia, however the opposite is true, that is, those with fibromyalgia have a history of anxiety. The mind and the body cannot be separated and are together joined forever. It is not a ‘curable’ dis-ease, but there is life after the diagnosis. So let us lighten up a bit for a few seconds! Bright flamingos should bring a smile to our faces, even if it is temporary ( I took this picture in Paris two years ago. These flamingoes did not have fibromyalgia). The more we smile the more the nervous system tells the brain there isn’t any danger, so relax and breathe. FIBROMYALGIA IS NOT LIFE THREATENING. But, it IS challenging! What is to be done for relief?

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Manual Therapies

I have been thinking a lot lately about the many, probably hundreds, of hours and money I have spent on various approaches to help my aching, painful body cope with chronic pain. Pharmaceuticals have not helped much. Psycho-therapy has helped somewhat. I have tried so many of the manual therapies and now, in hindsight after years of searching, continue to look for one or another to help me live with this demon in a more comfortable way. Let me list a few professionals who have tried to help and present my own analysis of their effectiveness for me personally:

Massage therapy: In Canada we have very strict guidelines for who can become a Registered Massage Therapist. Their educational system consists of a two year program and they must pass difficult standardized exams before they can qualify to practice as RMTs. Their knowledge of Anatomy and Physiology is extensive. Many of their clients suffer from chronic pain, among them people with fibromyalgia. The more experienced ones are highly regarded as their knowledge is invaluable. When I was younger I found their services helpful, although not long lasting. As I aged I found that too much was ‘stirred up’ and I would have after effects. Gentle soothing strokes, like Russian massage, which is only one half hour in duration, does help somewhat, (and has been found to be evidence based, which is unusual for massage practices) but positioning is difficult for me now. There are so many types of massage that I can barely keep up with the names and approaches associated with each. I have been particularly interested in the similarities among manual therapists in general regarding ‘craniosacral’ work. I will refer to this a little later on.

The down side of this therapy is the cost. Many, especially those who are no longer able to work often or not at all, cannot afford the luxury of massages. Even bartering with someone close to you can be problematic as trying to massage another can cause a flare up of hand, neck or back pains. In lieu of this I suggest gentle stroking of oneself with perhaps a feather, on legs or arms as a way of making contact with the nervous system; it can be relaxing.

Massage therapy has not been shown to rely on research that is science based, rather the practice is dependent upon anecdotal stories about relaxation  and a sense of well being that follows the procedure. However, touch has been shown through research to be essential to a good quality of life. But, it must be gentle touch! Nevertheless, many people with fibro cannot bear to have anyone’s hands on them, even gently, and shy away from any manual therapies. Those who can generally benefit by any form of gentle manual therapy. I refer to the work of Canadian physiotherapist Diane Jacobs who discusses how primates such as monkeys thrive by using the sense of touch and the ‘failure to thrive human babies’ is a constant reminder that ‘body work’ is extremely important to us all. More and more evidence of gentle massage is shown to have beneficial effects for elderly in long term settings. In the ‘olden’ days of back rubs in hospitals, patients looked forward to that much desired three times a day practice from the nurses’ soothing hands. The key issues are gentle, relaxing, comforting and soothing. While I have had many forms of massage I am of late enjoying reflexology because it is so gentle, although it is generally not considered a genuine massage practice.

Chiropractic adjustments: I have generally found these to be helpful as the treatments are short, usually 15 minutes. Because my body  often feels (?) out of alignment a short adjustment sometimes helps the joints. However, I am generally treatment sore for a day or two afterwards, even if it does not hurt at the time. I am never sure if a flare up is caused by this therapy. Again, the cost may be prohibitive for many without medical insurance, and if one does not have joint issues mild exercise may be just the way to go rather than a more slightly dramatic manoeuvre. For the past few years I have had trouble with my left hip so walking is difficult for me, but I try to walk as much as possible to help with alignment, however this does not ‘cure ‘ the problem. I do enjoy an adjustment, perhaps it is the placebo effect?!

Both chiropractors and osteopaths lay claim to being able to adjust the spinal column, but many consider this to be a falsehood and ‘pseudo-science’.

Chiropractors are experts in Anatomy and Physiology and spend four years studying to become a Doctor of Chiropractic (DC). They can not only order x-rays but can take them if their clinic has the facilities. Their practice is considered by many to be evidence based while mainstream medicine considers chiropractic to be within the ‘alternate’ domain.

The question is whether or not a true ‘subluxation’ actually exists, which is the basis of most DCs. Chiropractors  base their practice on the belief that bones are out of place, that the spine is out of alignment.  Allopathic medicine Dr. Harriet Hall, writes in ‘Science-Based Medicine’ ( posted by her on December 11,2009): “In the 114 years since chiropractic began, the existence of chiropractic subluxations has never been objectively demonstrated”. Further she points out that if chiropractors use manipulation for low back pain they are using an evidence-based method used by physio (physical) therapists and osteopathic doctors. But when they are using the term of subluxation it is a non-scientific belief system, she believes. The jury is out as to whether or not chiropractic manual therapy is a true science or not. Even if it is only a placebo effect, my view is if it seems to release pain to some degree keep up with it! If it doesn’t then search for other forms of touch that can provide relief, even if only temporary. This treatment should never hurt.

I am especially fond of my ‘own’ chiropractor as she sees herself “primarily as a nerve doctor, not a bone doctor”. She writes this in her newsletter (oxfordchiro.ca):”We live our lives through our nervous systems”. Since this is my overall view of the dysfunction of the nervous system in those of us with fibromyalgia her words are extremely important to me. “Our culture is focused on blood, such as pulse, blood pressure and cholesterol. These largely result from nervous system directions. So even the smallest nervous system disturbance can dramatically affect the way your whole body works”. Dr. Dena Churchill points out that although the moving bones of the spinal column are so close to the spinal cord,  it is not the bones that she is treating but the nerves. Her February Practice Newsletter/Oxford Chiropractic Inc is a valuable resource from an experienced chiropractor.

Back to the criticisms of those who do not believe in subluxation. I have come to believe that there is a great cross over among various manual therapists as to how to work with pain ( in particular), but it is in the language that is used that it becomes confusing. Apparently there is no evidence that a subluxation causes interference with the nervous system…hmmmm? But, bones can be out of place, can’t they? Who else might believe this? If bones are out of place then the nervous system, the spinal cord, other systems are out of sync. Who knows for sure that chiropractors are using the language of subluxation inaccurately? Is subluxation a condition? A syndrome? A disease? A dis-ease? Can it be cured? More questions than answers for those of us with this dis-ease of fibromyalgia.

Time for another break here. These bronze statues in Vancouver tell it all. When I visit there (which is quite somewhat frequently) I spend time with these guys as they suggest to me that there are more questions than answers!

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Osteopaths:” What’s in a name?”, William Shakespeare

What on earth is an osteopath? In the USA it is a medical doctor (MD) who then takes training as a DO but functions as a regular allopathic doctor. It is confusing to me why a medical doctor would go on to become a doctor of osteopathy but not do manual therapy. This doctor in the USA practices osteopathic medicine, which is the same as her/his colleagues who are MD s . In Canada and some parts of Europe it is a rather different story. A DO is a diploma trained osteopath (Diploma of Osteopathy), not a medical doctor with a degree. These practitioners cannot be called “Doctor” from their study of osteopathy. It is not a university degree granting program from which they graduate , rather it is a diploma they receive.

The founder of osteopathy was a man by the name of Andrew Still who was disillusioned by his studies in allopathic medicine, did not finish medical school, but began a school of his own in the US in the 1800s and called himself ‘Dr.’ Still. His students/followers were also called Doctor and their field of study was originally bones. In that respect his work was evidence based for the times as he studied bones intensely with cadavers and became expert in knowing their structures. The ways in which he studied physiology as opposed to anatomy is not particularly congruent with the science experts of even that day. He wanted to turn the idea of medicine on its head, particularly as he was opposed to any form of pharmaceuticals. It is a type of alternative medicine in which manual treatments are given to attempt to relieve muscle and skeletal problems. It is gentle and soothing and an experienced osteopath uses his hands to guide his treatment as do all manual therapists.

Still’s student William Garner Sutherland the man who originated the idea of Osteopathy in the Cranial Field had the notion that there was cranial bone mobility that would affect the cerebral spinal fluid pressure. This has shown to be inaccurate through scientific evidence which has repudiated this observation.

It is important here to point out the similarities between craniosacral therapy  of massage therapists and that of many osteopaths (and now more recently some physiotherapy approaches which are somewhat similiar) to working with manipulating the synarthrodial joints of the cranium. While cranial osteopathy has been characterized often as pseudo-science, woo-woo and quackery many practitioners believe that by releasing the bones of the cranium the cerebral spinal fluid is regulated and pain can be released. There are many who believe that by releasing these bones even fibromyalgia may be helped. None of these assumptions have been proven to be totally true. Research has shown a therapist cannot move the bones of the skull enough, if at all, to affect the circulation of the spinal cord. Ah! But as we shall soon see there is a physiotherapist of great acclaim who has shown otherwise! More later.

Rather than go into the history of this ‘profession’ it is sufficient to say that, like massage therapists or anyone who practices any kind of manual therapy, an intuitive understanding of the muscles and bones evolves over a long time. Osteopathy is not an evidence based practice. It is expensive for the client and often not paid for by insurance companies. Interestingly, in Canada it is often massage therapists who want the extra perceived prestige of a diploma in osteopathy after their names who enrol in a diploma school to learn the ‘theories’ behind osteopathy. However, in the long run I believe it is their initial training in massage and the years of experience they have accrued which will guide their practice.

I have had osteopathic manual therapy and in the hands of an experienced practitioner I can attest to some effectiveness for a short period of time, but not for a long standing condition like fibromyalgia, which (I repeat) is not a disease, although called one by many. It is a syndrome that requires more than manual therapy to treat. In spite of Still and his followers’ language which differs somewhat from that of allopathic medicine, and his emphasis on blood and veins instead of the new research which focusses on the nervous system and the brain, the practitioner uses the intuition of all manual therapists to aid in ‘changing the brain'( more on this later), although osteopaths do not use that language.  However, like all of us who enjoy stroking, rubbing, touching, massaging of our aching bodies the relaxation aspect is pleasant, and if one can afford it an excellent way to train the nervous system to relax.

Physiotherapy (Physical Therapy): Here we find one of the respected, evidence based professions that almost always uses manual therapies to treat the body. (Although I have had experience with physiotherapists who use machines and other equipment in lieu of their hands and for which there isn’t any proof of their effectiveness! Shocking to me!) . Insurance companies will fund their claims if one is fortunate to have access to insurance. Otherwise, in hospitals these are the professionals who are employed as manual therapists and there are many in private practice. Schools are situated in universities where the professors are expected  to do research that is scientific in nature. It is not considered to be an ‘alternative medicine’ approach, but mainstream. I will mention a few of the approaches of the more recent forms of physiotherapy.

A Simple Contact approach , developed by Barrett Dorko utilizes the body’s own subconscious movement , called ideomotor movement. I would encourage the reader to explore this concept as I have found it to be most helpful in the past. Ideomotion is a non voluntary movement prompted by mental activity. An example of this is the pain in my left hip and buttocks which I have discussed in the last blog. It is the ways in which my hip wants to move unconsciously but is interfered with by my brain registering  pain. The ways in which the pain has been released is through the gentle and slow movement of my leg by the physiotherapist. Many of the disciplines have based this awareness on their practices of their manual work through their own fingers’ exploration of their client’s body. I find this type of treatment relaxing and helps me to focus on ‘changing my brain’. Yes! My brain says :”You can move this hip/leg”. It is gentle, soothing and relaxing and promotes hope that change is possible. At the same time with this approach I can ‘be in the moment’, without worrying about the possibility of pain.

Gentle Skin Stretching, called dermo-neuro-modulation, ( DNM) developed by Diane Jacobs is a tissue glide in direction the body likes. I have had the privilege of having treatments by Ms.Jacobs while she was living in Vancouver. These are words taken from her website:

“DermoNeuroModulating, or -tion, is a structured, interactive approach to manual therapy that considers the nervous system of the patient from skin cell to sense of self. Techniques are slow, light, kind, intelligent, responsive and effective” . Her blogs are nothing less than amazing and her approach is one to which I ascribe. Her websites are extraordinary as are her research findings.

Somatic exercises, developed by Thomas Hanna, contracting the reflexive muscles so that one can actively own the muscle again, turning off and overriding the reflex. Such treatments include Yoga, Pilates and Feldenkrais and there are many ‘therapists’ who employ these specific methods which can be considered under the realm of massage or physiotherapy. It is difficult to find a specific discipline under which this approach would fit.

A more recent approach is that of Harry J.M. von Piekartz  (Craniofacial Pain: Neuromusculoskeletal  Assessment, Treatment and Management) which is similar to the cranial-sacral perspective of osteopaths, some chiropractors and massage therapists. 41tzwA04LAL__UX160_This work is considered by many to be evidence based, grounded in pain science research for those suffering from craniofacial challenges. Whether or not this is related to the release of bones in the cranium and allows spinal columns to open up and release tension within the entire body seems to me to be debatable, but perhaps because I am so much less aware of this technique which is difficult to understand I am not giving it the credit that is due. However von Piekartz has become very popular among many physiotherapists world wide, but not so much in Canada . These are some explanations given to me by a physiotherapist : When we do cranial mobilization  (it is not always moving bones)… we may move sets of nerves in the fibrous sutures (stress transducer analogy). This gives different sensory input to the brain. Or perhaps the pressure just sets off sensors in the skin like DNM- Diane Jacobs’ technique. Either way it is more about changing sensory input to the brain. All nerves pass from skull into lower regions. It is a gentle and not at all a painful approach to manual therapy. I have enjoyed it.

I am uncertain about this approach but I do know that all manual therapies are helpful IF A PERSON CAN AFFORD THEM AND THEY ARE GENTLE! Now in my old age I can attest to having had them all, I believe.  Because touch is so important to our nervous system they all feel good :-).

Then of course there is the common approach of using electrodes, the machines that take the place of hands and allows the physiotherapist to be treating more than one client at a time. It then becomes a political issue of competition among various practitioners who are vying for us as clients. I am critical of this practice.

This rather lengthy discussion of the various manual therapists available to help with chronic pain in the body must and should acknowledge the role of the brain and the nervous system who feeds it information. This is crucial to acknowledging the evidence based knowledge now available within the realm of the neuroscientists regarding ways to change the brain.

We fibromyalgia people are what our ancestors once called “highly strung” persons. Now, the secret is to find ways to live as highly sensitive persons while admitting there isn’t anyone who can ‘cure’ this dis-ease. But, we can still live fulfilling lives. We have to work with, not against the nervous system and manual therapists can help somewhat if they are up to date about the brain research and their views are evidence based. Otherwise a simple back  or foot rub from a loving person might suffice.

This is a dull winter, about- to- be another snowy day. My brain wants to descend into gloom. It is a struggle…

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Maybe my loving spouse might give me a foot rub? Or, alternatively I could spend the next twenty minutes in my space where I do mindfulness meditation…then do some stretches…listen to music. I am the mistress of my own fate.

 

 

 

20 comments

  1. Deidre says:

    I keep commenting on your posts about weight lifting. I have improved soo much since I started. It seems to have increased my pain tolerance. Weight lifting helps rebalance your central nervous system. I use to crawl up the stairs, now I can carry several bags of groceries on my arms as I walk up the stairs AND put everything away. I do still sometimes cry dureing my workouts but its only when Ive missed a week. I work out for an hour mon,wens and fri. I dont lift anything heavier than 25 lbs. Im stronger for sure but my pain level has very dramatically decreased after several months. BTW my husband gives amazeing foot and calf messages. I have to agree with you about that. I can feel the endorphins rushing into my brain and calming my whole body and mind. Maybe reflexology would be good for us Fibro sufferes?

  2. Barbara Keddy
    Barbara Keddy says:

    You are right, Deidre. I have my weights beside my easy chair to reach for if I have been sitting too long and reading or writing. Many of us are held back from doing what is painful because of fear. A fave physio of mine, Nick Matheson, a neuroscientist, wrote on a blog about fear that he offered counsel to those of us struggling to overcome pain to have ‘benign vigilance’. “In other words, pay attention and notice what the body is communicating; however, do not be overwhelmed and immobilized by fear. Ignoring a problem does not make it go away. Facing challenges with awareness, compassion, and intelligence is, in my experience, the best response”(Matheson- OnetoOne Wellness, Halifax, Nova Scotia).
    Thanks for your comments,
    Barbara

  3. Biggi Hahnemann says:

    Dear Barbara,
    although it`s a bit of a strain to understand and all the more to write a comment in a language which isn`t my mother tongue I will say a few words as I was really impressed by all the depth of what you wrote about”us”, the fibros.
    I think you are so right in saying fibromyalgia / chronicle pain goes hand in hand with anxiety.
    Which does not mean that you know about your anxieties !!!
    It took me a very long time to understand that a great part of my existance was anxiety.
    And still is – as kinesiologists told me.

    On the one hand I used to be the most courageous young person – travelling on my own, doing sports like deep sea diving, canoeing and many other things that others wouldn`t dare to do.
    But nowadays I think all this courageousness should cover the fear deep inside me.
    The fear that I wasn`t good enough from early childhood, together with the feeling that I wasn`t loved and not wanted, I wasn`even respected, but manipulated, often punished for “nothing” and given the feeling of being quite worthless and guilty in many ways.
    I think I was left on my own in times when you can`t easily exist on your own without help and care and unconditional love because you have to build up a basic trust first.
    Only in the end of my fifties I found out about my anxieties that were hidden deep inside me which I couldn`t face in my childhood because I probably wouldn`t have survived if I hadn`denied and detached from them.
    When I started to understand about my body conditions of stress and tension that lead to imbearable pain of course I couldn`t talk about my anxieties to family or friends, because they wouldn`t believe that the person as whom they knew me would have such problems.
    Now I always try to live according to the saying ” Everything you want is on the other side of fear”.
    But now this “going into the fear” means for me: accepting tears when I feel like crying, accepting not being the bright and perfect person I had tried to be, not being the “cool adventurer” that I used to be – but trying to do my best within a body that lives with pain.
    Which, as we all know, is quite a challenge and needs a lot of courage.
    I wonder how many of us HSP (highly sensitive persons) have had similar experiences.
    But I do know now we are courageous, we are lovable and we very often help to prevent others from a similar fate/ destiny because of our great portion of empathy and understanding.
    So much on fear from my side.
    Thank you, Barbara, for sharing great knowledge.
    There are so many other intersting aspects in your letter. Enough for now (:
    All the best to all of us
    Biggi

  4. Barbara Keddy
    Barbara Keddy says:

    Hello dear Biggi from Germany!
    Yes, we are HSPs and yes we suffer from anxiety and we are overly empathetic and fear is indeed our biggest challenge. This leads us to hyper-vigilance.
    Supporting one another through these blogs helps us to understand that this is a universal syndrome, often brought about from our childhood and is international!
    I hope you have access to someone who can give you some degree of comfort through gentle touching.
    Best wishes, in solidarity,
    Barbara

  5. Bonnie says:

    I find Yoga helps me if I don’t over do it. When I over do anything the headache starts, so I agree there is something to the nervous system being involved!

  6. Barbara Keddy
    Barbara Keddy says:

    Hi Bonnie:
    Yes, yoga has been shown to be among the most helpful of all practices for fibro (to help change the brain!) among other meditative practices such as Chi Gong and Tai Chi. Research indicates it calms the nervous system by educating the brain that movement is possible! Simple touch massage is among the best, in my view from the manual therapists and gentle movement exercises all affect the neural pathways to the brain. Always seek out gentle. Any aggressive touch or self imposed threatening/forceful approaches to the body is alarming to the nervous system. The best manual therapists know from recent research that causing harm/hurt alerts the amygdala to danger! Some fast paced yoga practices are extremely disturbing to the nervous system of the highly sensitive body and, in my view, are antithetical to the meditative/movement aspects of yoga!
    Keep on moving gently.
    regards,
    Barbara

  7. Deidre says:

    Funny, I had the opposite effect. I tried gentle yoga and Tai Chi for several years and it didnt make me any better. It wasnt till I pushed myself with weight training that I began to see huge improvements in my pain levels. For instance, when I first began weight training with 2 lb dumbells almost a year ago. April 2015 . I was crawling up stairs and could not carry groceries into the house. Today Im useing 20 lb dumbells and this afterneen I am helping my husband bring in firewood to stack in the cellar. Yoga and Tai Chi never did that for me. That was like telling my body that I was weak and delicate and that I couldnt handle living real life. I had to be careful and baby myself. Well thats a bad message to be sending to your body. IMO. I started lifting weights and told myself I CAN do this and I did, through my tears, I got better. I lead a normal life now ,I do have to be careful not to overdo it or have stress in my life as that will flare me but a flare doesnt bedridden me like it use to, it just slows me way down. Dont baby yourself. Your brain believes what you tell it. Baby yourself emotionally but not physically. Nurture yourself and pamper yourself emotionally but when it comes to your body, it will give you what yiu tell it to. God Bless. I wish I could get other fibro gals to believe me about this. You cant be afraid of the initial pain, you have to move through it and your nervous system will adjust.

  8. Barbara Keddy
    Barbara Keddy says:

    Aww, dear, dear Deidre:
    As I have mentioned before I do agree that strengthening is an important aspect of a healthy lifestyle, and of course weights can be integral to that. I also mentioned that my own weights are always close by my reading chair as a reminder and I do use them almost everyday. However, which way we look at it the person with fibromyalgia does indeed have a delicate central nervous system that requires conscious, graded movements that have to be individually tolerated. There are many factors that affect a person’s ability to undertake various forms of activity. I consider mindfulness as a daily practice, along with other meditative types of activity such as walking meditation, Chi Gong, Yoga, Pilates as a way of taming the CNS. Using these means of harnessing our emotions as well as stretching muscles are not considered “babying” oneself. We do need to have compassion and not assume that one size fits all.
    Three years ago I had a heart attack and the three month heart healthy program I attended introduced me to weight lifting. It is part of a general routine now. However, it isn’t everything! Walking, stretching, strengthening, mindfulness in many forms are all part of the gestalt. Age, race, class, gender, income, social supports, health conditions other than fibromyalgia, chronic fatigue, past histories, relationships, all affect our daily lives. We have to find which of the practices work for us.
    Our nervous systems ARE delicate but we CAN train our brains as I have written about repeatedly, and which you have done! Congratulations! But, for many just lifting weights is not the complete answer, and for many it is beyond their capabilities (for example, many with other conditions like multiple sclerosis and who cannot even move their arms). We have to both have compassion for others and ourselves at the same time. I do want to point out though that I don’t for a moment think we have to be couch potatoes, but we have to find what works for us. Go slow, be gentle, pace and challenge ourselves at tolerable levels.
    However, I am thrilled lifting weights has been so successful for you. Keep up the great work! You have trained your brain to accept that hurt does not mean harm and have become much stronger as a result. You are our heroine!
    Barbara

  9. Deidre says:

    Thanks for that patient thoughtful responce. I wish my experience could be true for others.I do see what your saying though about people who have other illnesses I refuse to think of my nervous system as delicate though. That kept me stuck in the pain loop. I am so glad to be out. It was extremely painful to get out ,but I perservered. Fibro is not an illness. Its a pain syndrome. You can break it. I use to suck on cherry lifesavers whenever my pain level was high and after a workout. The cherry lifesavers formed new nuero passageways in my brain that gave a pleasure responce in my brain to replace the pain responce in my brain. You can override neurons by creating new ones. I did a lot of reading about neuroplasticity and its amazing how powerful our brains are and how we can change them. I have PTSD so I know that my subconcious has a lot to do with the fibromyalgia. Your subconcious generates stress hormones and your not even aware of it. So I knew I had to start generateing higher levels of endorphins and also release these stress hormones from my body. STarting out was like moving my body through mud and boulders. Im just saying…dont let the pain discourage you and make you believe you are delicate and weak. You are powerful . Steadily moving ahead and progressively increseing your reps and sets will unload the pain buildup of hormones that seize your muscles. I dont want to belittle or upset anyone, I know how excruciateing it can get. I just want others to know theres a way through . I will always have fibro because my PTSD generates stress hormoines but Im not letting it bury me anymore and I encourage others to read about neuroplasticity, it will greatly benefit you. I want to be sensitive but I dont know how . I only know this worked for me and I feel like shouting it to the world. .

  10. Barbara Keddy
    Barbara Keddy says:

    Thanks again, Deidre. Neuroplasticity is what I have been writing about in many of these blogs. I could not agree more with you. It is possible to change the brain!
    Regards,
    Barbara

  11. Johanna Howarth says:

    Thank you Barbara for your blog. I particularly notice your comments about persons with fibromyalgia being also persons with highly sensitive trait and anxiety.

    Biggi, thank you so much for your post, you were writing about my life! We are sisters. I feel less alone now.

  12. Barbara Keddy
    Barbara Keddy says:

    We are indeed all sisters in this struggle, Johanna! Yes, I have written many blogs on this website about the highly sensitive person and fibromyalgia. That is my basic theory. Do you fit this personality type? Keep in touch,
    Regards,
    Barbara

  13. Ellen says:

    I feel compelled to comment again, as I have been reading a few of your past blog posts, and feel as though I have found my home!

    I remember as a teenager (I’m now 28) stumbling across the book ‘The Highly Sensitive Person’ by Elaine N. Aron, on my parents bookshelf. I read the first chapter and thought ‘this book was written explicitly for me!’ It really resonated with me. So now having developed my chronic pain condition (and the rest), I entirely agree that there is a link between fibromyalgia and an anxious, sensitive person. It is comforting to read it here and hear other women’s similar stories.

    Thank you also for your thorough research and insight into manual therapies. I also find touch to be very soothing if it is gentle. Sometimes I think that getting a partner/friend to stroke or rub feet, backs etc. can be as remedial as paying a lot for a professional therapy.

    Thanks again,
    Ellen (UK)

  14. Deidre says:

    Ellen, I read a book similiar to the one you did. It was called too fast too loud too bright too ??? I forget the name. Its about haveing an overly sensitive CNS. Going for occupational therapy was extremely helpoful for me, I saw a therapist there who specializes in Sensory Processing Disorder and she gave me great tips for coping with sensory overload. Ways to self soothe myself and bring about equalibrium. One of the ways is useing a weighted blanket. Within minutes of haveing that extra 10 pounds lieing across my stomach and hips I started to sigh a lot and became calm and relaxed. Sensory Processing Disorder is often overlooked in girls so we grow up thinking we have an anxiety disorder when really we are just easily overstimulated and when we cant get our nervous system back to calm we experience rageing muscle pain from the overstimulation. Dee

  15. Barbara Keddy
    Barbara Keddy says:

    Hi Ellen: I am happy you have found your home:-). I based my entire theory in the book on The Highly Sensitive Person…all those years ago! You’re right, a partner or friend can stroke or rub and it is very soothing to say the least! Every evening I have my dear husband rub my legs as I watch TV as I am then very tired and my legs begin to ache. But even rubbing oneself gently when the pain is so bad can be helpful. It also changes the neural pathways in the brain since that is where pain is located. I find this time of year very difficult- the change of a season. One day cold, another warm. These bodies of ours are so in tune with the environment. Elaine Aron considers us canaries in a coal mine and that what we have is a gift in terms of our awareness and intuitive personas!
    Keep on reading more of the 125 blogs!
    Regards,
    Barbara

  16. Barbara Keddy
    Barbara Keddy says:

    Hello Deidre: I have never heard of putting a weighted blanket on my abdomen! What an excellent idea. I will have to read more about that. Thanks for sharing that idea.
    I agree with you about girls thought of as anxious and hysterical. The main point I make in my book is that because females are taught early on to look out for others, be alert to the needs of others, are often the caregivers, we have developed an overly empathetic, over-caring, highly sensitive central nervous system. A hyper-sensitive, hyper-vigilant nervous system is bound to keep us in a state of anxiety. We often feel we can’t do enough and our thoughts are racing and in turmoil.
    Great in-sights. Thanks.
    Barbara

  17. Deidre says:

    Barbara,
    Thats interesting,never thought of that. How girls are taught to be nurturers and caregivers. Always caring about others needs can definately make a person hypervigilent. Im gonna stop focusing on others so much and focus on me 🙂 Dee

  18. Amy Pilgrim says:

    Hello Barbara,
    I am a RMT & Reflexologist in NL and I have been diagnosed with Fibromyalgia. Reading this article I love that you have tried so many different holistic therapies and that you are enjoying Reflexology. Anyone with Fibromyalgia, in my opinion, would benifit from a Reflexology treatment. Reflexology treats the entire body through light pressure on the hands & /or feet.
    I didn’t however see anything about trying Cupping massage. I am certified medicupping Therapist and I believe that it is very beneficial for anyone with Fibromyalgia. Instead of applying pressure like a regular massage it does the opposite with the same if not better effects.
    If you ever have the opertunity to try it I would highly recommend you do.

    I am new to your blog, I found it through a random search while doing research I’ve been thinking a starting my own. Yours is wonderful, thank you.

  19. Barbara Keddy
    Barbara Keddy says:

    Dear Amy: Thanks for your comments and suggestions. Yes, I have had cupping among all the other types of hands on practices. In fact, I first had it in China in 1977! However, lately I have found reflexology to be the most soothing. I have noticed that over many years I shift from one practice to another. This year reflexology is definitely in, particularly in the winter as I don’t have to get dressed and undressed and dressed etc:-)
    Thank you for your compliments. Sometimes I think that after 120+ blogs there isn’t anything left to write about then a new idea springs up.
    Keep on reading and commenting!
    Regards,
    Barbara

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