Fibromyalgia: Living with Chronic Pain

“In three words I can sum up everything I’ve learned about life: it goes on”, Robert Frost

I have frequently cited the works of adiemusfree from her HealthSkills Blog. She has become my guru for updates on research regarding pain. I take hope because of her personal struggles with the issues surrounding living  with acceptance in lieu of catastrophising. Daily pain is exhausting, depletes our energy, leaves us with a sense of hopelessness. Each new symptom (and there are many) can be like taking one step forward and two backward. How do we continue? As she says in her October 18/15 blog: “After all, life doesn’t stop just because pain is a daily companion”. The same could be said of the other myriad of symptoms we experience.

Chronic pain has become one of the leading reasons for doctor’s visits, work day losses, increases of pharmaceutical approaches for controlling the symptoms and the emergence of Pain Clinics. Health care professionals are trying many strategies to ease the suffering of millions of those of us with a less than good quality of life. Among them is the American law professor, Toni Bernhard, who documents her journey through the maze of adapting to and living fully with chronic illness. Her newest book is a practical and honest account of the ways in which a person living with chronic illness can turn her/his life around. As I have discussed so frequently Mindfulness Meditation is integral to her work.

41-QeMRwORL It would seem that among the experts of chronic pain, the advice is very similar: exercise moderately when able, meditate, learn to say “no”, avoid being around friends and family who do not support you, always keep in mind the idea of ‘pacing’ yourself, practice self compassion and above all learn to live, rather than to be subject to defining oneself as PAIN! Living in the past or looking into the future is counterproductive. Being in the moment is the only way to live life fully.

It has taken me a long time to stop thinking like an invalid, rather than to acknowledge that I will live with pain but it will not define me. I will continue to do things I enjoy, with limitations, rather than waiting for the pain and fatigue to overtake me. But, oftentimes I give in to hopelessness particularly when my energy is depleted. It is somewhat difficult to accept that monitoring myself is the “new normal”.

Adiemusfree, the author of HealthSkills Blog writes : “We all know that having pain can act as a disincentive to doing things. What’s less clear is how, when a person is in chronic pain, life can continue.” (October 18, 2015). She goes on to say how complicated it is to work around what is considered to be “normal” within daily living. Life never proceeds along a linear straight path without daily fluctuations. What is normal on a snowy, blustery, isolating day differs from a lovely autumn day when getting around outside is less problematic. Some things are beyond our control; while others are of our own doing. Trying to organize a dinner party for a dozen family friends at Thanksgiving is a major undertaking. But taking a drive in the countryside to leisurely appreciate the beauty of the day can be soothing. Yet, both are what we might enjoy and having to exclude the one that would cause stress and anxiety might produce feelings of guilt and sadness.

This time of the year when there are such things are “scarecrow festivals” that make one smile can be just the medicine one might need.IMG_3771

But serving and preparing a dinner for guests can result in catastrophic thinking as one tries to be the perfect host.image1 Yes, a gorgeous pie made for our Canadian Thanksgiving dinner in October. Granted it was made by my granddaughter, nonetheless the work required for a dinner of twelve can be overwhelming.  Sensibly, I was able to say that  I was tired (the fatigue that only those who have it can understand it) and would be the only person present who would not be doing any of the work. In the past I would have exhausted myself trying to manage the entire affair. It takes a great deal of courage to be present at an occasion and not organize and take care of others. It takes old age to recognize that I can do both. Go for a ride to see the colours; go to a Thanksgiving dinner and sit back, watching others, being thankful we can be there and not feel overwhelmed with anxiety about how we should take charge.

After my month long participation in June at the Pain Clinic, I slowly began to realize that those of us with chronic pain fit a profile that is very similar to one another. Many of us are prone to catastrophizing about our symptoms, often give in to depression following a bout of anxiety over some new experience of pain, and generally cannot remember that life varies often from hour to hour, certainly day to day. That there are challenges for us there is little doubt, but the term chronic implies that it is permanent, without any joy left to be looking forward to, little wonder we give in to a sense of despair. Anxiety- looking to the future with a catastrophic outlook. Depression- looking back on the past wishing we could change what we have become. It is not living in the present moment.

How many of us have fearful thoughts about the future? I do often. In Mindful Meditation seminars we are taught that thoughts are not facts. Believing I cannot ever again undertake a task that gives me joy is a challenge I face daily. We often have to compromise but sometimes the brilliant ways in which we have modified our accomplishments can be very satisfying.

I have been reading how Buddhism defines destructive emotions as passion, aggression and ignorance. I can relate this to fibromyalgia. Unless we become the expert of our own lives we will continue to suffer from ignorance about this syndrome with which we have become afflicted. It is the inability to see the truth about our relationship to this over-stimulated central nervous system. If we continue to treat fibromyalgia with aggression rather than kindly as part of our Self then we only exacerbate the symptoms. Without self compassion we will continue to treat ourselves in ways that continue to cause more suffering. Then there is passion which is the desire for a different life than what we have.  I am not a Buddhist nor an expert on the philosophy, but one of the basic concepts is that of suffering. It can be translated into anxiety or stress, the mental form of which can be suffering from growing old and illness both of which are endemic to fibromyalgia as we wonder if this pain will last forever and how we will manage in the future. We all suffer, it is part of the human condition. However, often fleetingly, there is joy.

So, on this grey November day when the leaves have almost all fallen from the trees and we wait for the first snows (at least in my part of the world) I have to practice what I preach. Stop and enjoy some of the beauty still left from the autum colours.

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15 comments

  1. Barbara Keddy
    Barbara Keddy says:

    Dear Bonnie:
    You are right, no other person can live in our shoes. We each are the expert of our own lives and fortunate if we have support of family and friends who are understanding. Even then it is a challenge for them as well as for us.
    Talk to your pain (or any other symptoms) and don’t fight against it. Acknowledge it, the more we struggle the worse it becomes.I know though that this is easier said than done.
    Take good care,
    Barbara

  2. Brigitte Hahnemann says:

    Dear Barbara,
    it doesn´t often happen that I take part in any conversation about fibromyalgia in the public, sometimes because of fatigue reasons, but also because I don`t want to be busy with an “illness”, that already takes so much of my precious time. But I feel obliged to say thanks here for the phantastic way you are dealing with what we see as our daily “problem”. Whenever I read one of your articles I feel deeply touched, thoroughly understood and also supported to accept my own self the way it is just now and the way it feels at this moment. For me this “condition”, which followed about 30 years of increasing chronicle pain in a certain area in my spine, was a new challenge because it wasn`t so cleary defined, harder to be treated and not in the same way socially accepted as the chronicle back pain I had been used to. But it also changed my life in a very positive way. I finally understood that me being a highly sensitive person (like certainly most of us) I had lots of qualities that are precious,for example in the way we treat creatures. And I finally decided that I wanted to be treated accordingly, which hadn`t been the case. So I changed my life completely, left people whose energies had weakened me throughout my life and stepped out of that role as a victim. I`ve gone through seven hard and painful years now, but step by step I can accept and even be greatful for the lecture my body wanted and still wants to teach me. And just as is explained in the article I have learned to accept my limitations,given up perfection, practise self compassion, enjoy the good hours thoroughly and never give up hope ( although I admit that there are setbacks every now and then). I do practise Yoga, Qi Gong according to my physical possibilities, rest whenever necessary and do a lot of meditation and breathing techniques. Walking in nature or taking a bycicle ride is fine for me today, where in earlier times it had to do worldwide travelling and climbing mountains. The smaller things in life have got a greater value now. I started a new hobby ( playing the guitar and singing) and I only accept people in my vicinity that give me a good and loving feeling, which for me is one of the most important change. I try not to see pain as an enemy any longer, but rather a companion who wants to give me a piece of advice every now and then. It took me a long time to get where I`m now at the age of 62. And I want to encourage all of us to see the beauty of life in spite of what we sometimes undergo. Just as Barbara pointed out so brilliantly.
    Thanks and all the best for all of you
    Biggi Hahnemann, Germany

  3. Barbara Keddy
    Barbara Keddy says:

    Dear Biggi:
    Your letter filled me with great joy. I know how much effort it takes to comment on blogs; it take so much energy to write them!
    After years in academia when we had to present long reference lists and bibliographies I have chosen to write more in a personal way in order to save time sitting at the computer. So, it is wonderful to receive comments and feel like I am bringing together many around the world who share our common life stories.
    I have named my pain “Hortense” and I speak to her often telling her I know she has a message for me so I will listen. In the past I struggled against the pain as if I was in a war with it. It was a useless approach. I am now kinder to her. I am more than ten years older than you are. I wish I had known what you do now when I was your age. I would have saved myself so many hours of struggles.
    Meditation, Chi Gong, mild exercise, walking, yoga and MUSIC!!!! How wonderful. You have the perfect balance, all of which will change the neural pathways of the brain. Very sensible idea to avoid people in your life who cause you pain and angst.
    In solidarity, best wishes,
    Barbara

  4. Brigitte Hahnemann says:

    Dear Barbara,
    thanks for your kind answer.
    This is indeed the first blog I`ve ever taken part in. It`s never too late to change ideas (:
    I do have great respect that you being ten years older than me have such a positive and encouraging way of coping with our little “friend” which you have given a flower`s name. Great idea. I might copy that, probably using a diferent flower (: We do have to be very friendly with ourselves and our “companion”. Like you I have fought against pain for about 40 years. Doctors gave me hundreds of injections, put my vertebras in place and supplied me with painkillers, in the end morphines, until my immune system was completely destroyed. Then they left me alone without an answer because they had none. Some even called me hypochondriac.
    But at that stage when I was about to give up people came into my life that gave me hope – today I call them “angles” and since then there are always some sort of angles around when I find it difficult to cope.
    So I gained more and more confidence.
    I don`t know how far it is allowed and makes sense to speak about programmes that have a name because of surrepticious advertising, but I might share a few ideas that may also be interesting for others as I know people have been cured or at least had a great benefit from those. Like myself.
    Perhaps another time. I`ll wait for an answer, but just take your time!!!
    I`m not a computer-lover, so I may not respond too quickly and often.
    Best wishes – and a big hug to “Hortense” and all the friends on the blog
    Biggi

  5. Barbara Keddy
    Barbara Keddy says:

    Dear Biggi:
    It is a rainy, damp day here today so it may be quite a challenge with pain. Weather affects us so dramatically. Is it cold in Germany this day?
    As for programs that may help those of us with fibromyalgia, I believe Pain Clinics and Meditation groups are extremely helpful. Then there are positive ones like music, yoga, Qi Gong programs that are uplifting. I believe we are the only ones who can help ourselves with all the approaches previously mentioned.
    Since fibromyalgia does not have a particular way of being diagnosed except for touch of the places where we feel pain, it is difficult to diagnose and to treat.
    As an aside, I am not personally ‘into’ alternate ‘medicine’ as I have spent much money on useless, NOT evidence based practices. However, many have found success with various approaches to ‘cure’ or at least reduce the symptoms. I suspect it is the placebo effect. So many of us have tried various diets (example: gluten free) or acupuncture, or homeopathy and found that the effects are either non-existent or short term. Yet, certain body treatments like massage, chiropracty, and physiotherapy have beneficial effects in calming the central nervous system. Are these alternative or complementary? I don’t have definite answers. I believe we all have to find ways that help us given the economic, social and psychological situation that are part of our individual personal lives.
    I am so happy to have met you on-line.
    Rest and enjoy the day!
    Barbara

  6. Brigitte Hahnemann says:

    Sorry, Barbara, for a late answer,
    but yesterday the weather in Germany wasn`t bad for November, so I went for a nice big walk and to my Yoga place in the evening. And even today it was unexpectedly nice, much colder and windier though, just o.k. for a short walk. So I could finally spend a lot of time in the house, busy with cleaning and doing the washing, cooking etc. And of course I overdid.
    While listening to the news and comments on the dreadful things that happend in Paris. My “companion” gave me quite a hard time throughout the day.
    I`ve decided to call her “Lilly” after one of the dearest friends of my childhood, a loving and very lively elderly lady. It seems a perfect idea to personalize pain in that way. Makes it much more bearable and friendly. Thanks for the great idea (:
    I do admit I haven`t found the final solution for my state of health and also tried lots of things, but I won`t give up trying whatever sounds hopeful for me. And if they help short term – better than nothing – every day is a gain. And I do believe in wonders!
    Placebos are great help, just like joyful occupations.
    Massages, especially energetic ones and those with pure essential oils. At least for me. And I like giving and taking them. Both can have a great effect.
    I`ll get one tomorrow and I`m looking forward to that.
    Essential oils ( aroma therapie) accompany my whole day. When inhaling them they go directly into your limbic system and can cheer you up.They can do much more. It`s a great and really interesting field.
    At least for some of us. To my opinion for many of us. But only the oils of highest quality!!!! Cheap stuff can make you sick.

    I do believe in certain possibilities that have to do with food.
    I can probably say a bit more about this later when I have gone through another interesting experience.
    I really have to stop for now – as the computer is one of my greatest challenges concerning pain. In my case it may have to do with old beliefs, old patterns in our heads.
    So I`ll take “Lilly” to bed now wishing you and “Hortense” and of course evrybody else in the group
    a good night with a fair amount of sleep and sweet dreams
    Biggi

  7. Devin Osbaldo says:

    Usually fibromyalgia’s treatment includes painkillers, antidepressants, and anti-seizure drugs. But one can cure the pain of fibromyalgia with yoga, Acupuncture and Cognitive-behavioral therapy. These are pretty good options as compare to other to the medicated drugs.

  8. Barbara Keddy
    Barbara Keddy says:

    Dear Devin:
    I agree that yoga and CBT are excellent options for calming the nervous system along with Mindfulness Meditation. These strategies for treatments that will help control some of the symptoms are becoming more and more evidence based, which will help health care providers with options that are non-invasive. Acupuncture has not been shown to help with fibromyalgia except in regards to the placebo effect, which is itself not to be disputed as useful.However we calm the central nervous system which is in a state of hyper-arousal is useful!
    Thank you for your comments which are helpful.
    Regards,
    Barbara

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