Fibromyalgia and the roller coaster of emotions

” You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face”, Eleanor Roosevelt

In my view fibromyalgia is precipitated by the emotions of anxiety/fear which began perhaps in utero, but more likely early in life in which a child develops a hyper-aroused nervous system. Traumatic episodes experienced in a highly sensitive person is a fertile place for fibromyalgia roots to take hold. Generally  this dis-ease (not disease) begins to show its ugly face early in midlife. As a youngster this child is often said to be ‘highly strung’ or ‘too sensitive’ or ‘too fearful’. One woman I interviewed said she was likened to a ‘hot house orchid’, fragile and overly empathetic. I have yet to hear any of the hundreds of people I have either spoken with or read about who did not say somewhat the same about themselves. Tuned in to the world in a hyper-vigilant, overly caring way, the parts of the brain which can distinguish between that which is safe, or conversely fearful in our environment, is in a state of disarray. Anxiety predominates the personality of the fibromyalgia person.

Those of us with fibromyalgia have neural networks that are quick to assume the worst and the anxiety/fearful emotions keep us in a state of upheaval. It becomes a roller coaster ride. The results can be devastating. Many are in the health professions, particularly nursing and social work where they become high achievers in caring professions. The same can be said of the military where PTSD has become extremely noticeable of late. Witnessing  and experiencing trauma in war time areas is extremely fearful, particularly for the overly sensitive person. Note for example, Florence Nightingale who was a nurse in a war. Ms. Nightingale is thought to have suffered from fibromyalgia.

Years of living as a person who is attuned to the atmosphere in any environment has allowed us the ability to read people and situations more easily than most people. We can almost feel the anxiety of another.  Chronic anxiety and fear, two debilitating emotions results in a myriad of physical ailments such as  pain, fatigue, insomnia, itching, digestive upsets among the  more common ones. Silent and invisible as this condition is, we become demoralized and soon depression sets in. We long for peace and calmness which become almost non-existent.  People with fibromyalgia become the walking wounded living with chronic pain.

We are generally very hard on ourselves, believing we are hypochondriacs and malingerers. I often call myself whiny and have to pay attention to what I am telling my brain that reinforces negative feelings about the kind of person I am. I can give in to fear non-stop if I don’t admonish myself with a ‘STOP’ message. Carolyn Gimian in the April 2016 journal Mindful writes: “Fear, while critically necessary for life itself, can be horrifying and crippling. It can also eat away at us day in and day out” (p.59). The title of the article is “Face Fear and Keep Going”.

I believe that while over a lifetime we have become anxious and fearful about many things it becomes much worse when we have a diagnosis of fibromyalgia. Then we begin to think in catastrophic terms: What if I become totally disabled? What if this pain never stops? What if I become totally house bound? What if there isn’t anybody to look out for me? Am I about to have another pain flare-up? Our brains are forever seeking out where we have perceived or experienced fear in the past and imagine that we should be  fearful in the moment. We become emotionally dis-regulated. Our plastic brain which is stimulated in a particular way becomes more and more enmeshed in our pain and/or other debilitating symptoms.

In one of her incredibly insightful blogs, Bronnie  Thompson (in adiemusfree, February 14/16) writes about pain memory and association and the “never-ending network of related experiences and memories and relationships”. For example, words, images, locations even smells can bring about an association with pain, which is one of the criticisms I have of pain clinics. Several of the participants in the month long class I attended said their pain was much worse after the constant reminder of living with chronic pain! Their anxieties became worse as they listened to stories of others whose pain seemed to be more or less intense than theirs. If it was more they wondered if they would become as bad as the ones who seemed to be suffering intensely and even if it was less they still wondered if  they were in more danger as time went on. The brain and its neural networks is intriguing, forever seeking out real or perceived danger. For those of us with fibromyalgia it is a heightened interweaving of various components of the brain dwelling on fearful possibilities . It is neuroplasticity going wild! Neurons continue to misfire.

Ah, but there are solutions to this noisy brain of ours. I have quoted Dr. Norman Doidge elsewhere in other blogs about his book The Brain That Changes Itself   as he writes about how the brain is not fixed but has adaptive abilities. Among many of his suggestions is the simple act of  conscious walking meditatively, or using music and voice to stimulate brain circuits, or touch therapy, among other ways of changing the brain. Those of you who have practiced meditation have no doubt been part of walking meditation practices. The brain can heal itself and it can find new ways of taming those neurons who are so quick to send messages of fear and anxiety through a conscious plan to bring about change. Exercise of any kind, which need not be vigorous, is a beginning process for those of us with a desire to experience peace. Our racing minds can be tamed with even a simple practice: take a one minute mindful pause several times a day.

As I watched my two granddaughters bounce joyfully in the air I am reminded of the ways in which their brains are in tune to happiness and the exhilarating moment that movement can bring. While we need not or cannot(!) ‘jump for joy’ we can at least take a daily walk, even if for five minutes, to help make peace with our emotions.

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14 thoughts on “Fibromyalgia and the roller coaster of emotions

  1. Ellen

    Hi Barbara, I’ve discovered your wonderful and interesting blog, after a recent diagnosis of Fibromyalgia (although I have had it for a few years now).

    What you say about anxious and highly sensitive people rings incredibly true for me. I haven’t experienced trauma as such, but always been highly sensitive since I was very young, anxious of putting myself in seemingly harmful situations, and in more recent years a sufferer of acute anxiety, mainly around my health problems. Like you say, it only intensifies once we get physically ill, as of course we worry about the pain, the fatigue, and any decision that might affect it!

    I too have found some solace in being mindful, gentle stretches (or mindful movement), and being accepting. It’s not an easy process though is it…

    Thanks for your writing,

  2. Barbara Keddy Post author

    Thank YOU, Ellen! Everything you write about is reflective about me and certainly most of the readers. Anxiety is, for me at least, the worst of all the symptoms! It always leads to a flare up. We have to become the experts of our own lives and find ways to take care of ourselves. I keep asking myself: What is the worst thing that can happen? It helps put things in perspective. Mindful movement is such a lovely movement. I have recently been pool walking three times a week and it helps greatly with pain as there isn’t any while I am in the pool!
    Happy first day of spring for those of us in the northern hemisphere!

  3. Barbara Keddy Post author

    It feels so good because there isn’t any pain while doing it! The tendency is to go for too long and trying to do it too fast. While the water does not allow one to walk fast there is still the urge to overdo it! Try it. I think it is probably among the best of exercises if walking outside is too painful.
    Keep in touch, Ellen!

  4. Bonnie

    Well said! I can relate to being over sensitive to others, and to anxiety about the way my symptoms are always changing. I always say “everyday is a new adventure! “May I suggest getting a dog to keep you company and give unconditional love. I do mindful walking every day when I walk her, and she won’t take no for an answer If I don’t feel like walking. She has been a God send!

  5. Barbara Keddy Post author

    Hey Bonnie: A dog! Good for you. I have been reading a great deal about therapy dogs and their ability to sense when their owners are experiencing anxiety and panic. They have been so helpful for those with PTSD in particular. And mindful walking with that lovely animal insisting on making you move is an excellent motivation! I have a lovely image of you and your dog who would be sensitive to your every emotion and how he/she can help you live in the moment. Wonderful!

  6. Sarah Hall

    Thank you Barbra, my niece has been diagnosed, and of course the whole family is trying to find ‘cures’ for her, especially her brothers. I will direct them to this blog. Thank you yet again.

  7. Barbara Keddy Post author

    Hi Sarah, tell your family to please stop looking for a cure per se. Help her to avoid too much stimulation, do gentle yoga, light exercise, talk therapy and other things that will reduce the trauma to her central nervous system. The work is up to her and with a supporting family she can improve the quality of her life, but not to expect a magic solution. Hopefully she will not be over medicated.
    Best wishes,

  8. Tara

    Thank you for the insight. It’s so helpful to read about fibromyalgia from someone who knows of the toll it takes. Anxiety and the constant pain are the worst. I don’t have flare-ups. It never gets better. Trying to work full time with a 3 hour daily commute, taking care of my kids…I always feel like I’m not doing enough but realistically I know I’m doing more than I should.
    I meditate, do video hypnosis on pain, listen to solfeggio frequencies. Anything to help with the pain and anxiety.
    I work with people who are disabled. They are constantly knocking on my door, needing my help. It’s all just too much.
    I’ll come back to your site for coping tips. Gentle hugs to you!

  9. Barbara Keddy Post author

    Dear Tara: You are indeed doing too much! This seems to be a common thread among we women in spite of the so called great advances since the women’s movement! We are trying to juggle home, work, commuting, living in a chaotic, stressful world while at the same time exercising, taking care of our bodies, eating properly, staying slim and attractive. The demands are often so overwhelming we cannot keep up the pace. Added to this is that those of us with fibromyalgia are already over-stimulated and living with a hyper-aroused central nervous system.
    Coping tips? It seems to me you are doing the best you can under difficult circumstances. If I could wave a magic wand I would say stop commuting, and find a job that is less demanding, but that is unrealistic. I can only send best wishes during these difficult years.

  10. Stephanie V Pekala

    How does one go about finding out if they are an HSP with coexisting conditions? I was diagnosed with fibromyalgia (been suffering for 6 years or so) and recently came across HSP documentary that really had me thinking if what seemed to be ADHD and GAD could be caused by HSPT. Do you know of a person who specializes in diagnosis for and treatment of HSP? In addition, one that does virtual visits? Here in NJ, it is relatively difficult to get anyone in the mental health field to accept requests for any virtual visit via teledoc, so any suggestions are welcome and appreciated. I am a psychology major from Drexel University, and although it is terrible to self diagnose… I have often considered and thoroughly researched CPTSD, ADHD, GAD and now, having a HSP… (For me, it could be a combo or all of the above for all I know… either way, overwhelmed and exhausted, and QOL is dropping expedentially. Thanks for any guidance you can offer.)

  11. Barbara Keddy Post author

    Dear Stephen: I am exceedingly embarrassed that I had not seen your comment before this. My only excuse is that during this pandemic and even beforehand I had reached the point that I thought I had little more to say and that I was becoming repetitive. I want to suggest that you read Elaine Aron’s book on the Highly Sensitive Person. She has written several many of which would no doubt meet your needs. I read her first one years ago and haven’t looked back since. It helped me view the world differently and even now during this pandemic I believe that the long haulers are highly sensitive persons, which may or may not be accurate- it is totally my own belief. In my view it is the same for those who are labelled PTSD- again I believe it is part and parcel of the same thing. Very best wishes to you during this stressful era.

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