Fibromyalgia and pain management strategies

” These are exciting and challenging times for the manual therapy professions. I believe that the pain science world is handing extremely valuable information to clinicians. We now have a greater understanding of the behaviour of pain states and we are becoming aware of the molecular targets of manual therapy” , David S. Butler

Dear readers, I apologize for not writing a blog last month, but I have been sick with a cold that would not abate. Nonetheless, as usual I have still been pondering about the many issues that plague those of us with this demon that can be so debilitating. I search constantly for strategies that could be effective for pain management and my readings and searches often  take me to places I had not been before. But no matter where I research I come back to pain and the brain and evidence/research based strategies. I will never find the cure for my own chronic pain. It is a question of what practices work somewhat and which ones would do more harm. Most importantly how  I can  avoid flare-ups and not to identify myself as my pain to the point where I don’t move coming from a place of fear.

Repetitive actions, long workouts, strenuous exercise is often harmful, not only to those who have fibromyalgia, but for most of us.  I remember meeting my physiotherapist Nick Matheson for the first time and telling him I was aiming to speed walk for one hour a day. (I have made reference to Nick on other blogs). His question to me was”WHY?”. Now, I understand the reasons ‘why not’. It isn’t that walking for an hour cannot be pleasurable if one is so inclined and the weather is agreeable. It can even be relaxing and have direct positive effects on our brain . But to take this on as a long trek and as something that would provide physical benefits, the research has shown that after about 15 minutes repetition ceases to have many (if any) results. Living as I do in a climate that is rainy, damp and foggy, walking outside is not often a positive experience. Walking in a gym for that length of time is less than helpful for strength building and boring! So, I have abandoned both inside and outside walking for more than 15 minutes at a time. Evidence has shown that these short walks once or twice a day are more beneficial than a prolonged walk.

I have been thinking about this blog on and off for weeks now and it is difficult to summarize where it has taken me, in spite of the fact that I know it is directly related to pain control/management. One interesting experience I have had recently involves an elderly couple who have found pain control using a ‘foam roller’. Their stories about this apparatus intrigued me and so of course I had to immediately  research the topic. It turns out to be something I had used in yoga classes two decades ago and in fact, own a modified version of it myself. Basically it is a very hard bolster which one rolls on to release soft tissue. One must be very strong to avoid pressing on bones or joints which could be damaged during the process of using it.  Foam rollers seem to have been popular two decades ago in Canada among some physiotherapists, influenced by the yoga community and the “core strengthening” craze. In fact, it is a process of self massaging. According to the manufacturers, one must not have chronic pain to use it safely (that is, the pain must be an acute episode), nor any history of cardiac problems, such as taking heart medication, high blood pressure or blood clots and the person must have the strength to avoid coming in contact with joints or bones. Fortunately this couple are very strong physically, do not have a history of any cardiovascular problems, and can avoid damaging themselves using the foam roller. For them it has been highly effective in eliminating pain from their lives. Those of us with fibromyalgia could not safely use it, given our weakened muscles, and so that story ended, along with any other kind of apparatus intended to help with pain management in fibromyalgia. While it is possible for those of us with fibromyalgia to build strength, it takes awhile, particularly if we have had the condition for a long time. Obviously, the younger we are the better chances of developing strength at a faster rate.

I know that all of us have heard of various strategies that could help with pain other than medication and off we go to try a new technique or gadget only to find we have a flare up. I believe it is part of our hope for release from pain that we find a so called expert, or become enthused with the excitement of someone who has had a positive experience with pain control that leads us down a particular path. I think  I have tried it all : acupuncture, yoga, Chi Gong, Chinese herbs, homeopathy, chiropractic techniques, massage therapy, naturopathy, reflexology, flower essences,  jin shin, tens machines, osteopathy, Feldenkrais, the list is endless and of course expensive. Finally, after many years I have found that the issue of pain control lies within our own brain. It becomes our own responsibility to use the strategies that those neuroscientists and physiotherapists who have done the research and found the most effective ways of managing the pain on a daily basis. Once again, on my band wagon: light exercise that can progress to more moderate, movement, meditation, relaxing techniques, quiet, peaceful hobbies that bring joy and are creative for us are among the strategies for those of us with fibromyalgia. Not easy to incorporate in our daily lives, not frenetic, requires discipline, avoidance of alcohol, caffeine and sugar, keeping stress to a minimum are the ways in which serotonin will be released and pain will be managed if not obliterated. Struggling with pain and taking on the view that it must be conquered cannot do much except exacerbate our anxiety. The idea of being in pain can become hard wired in our brains; we need to believe in our own capacity to change this image of ourselves and work through it. For me it involves working on optimism rather than pessimism; not an easy task!

The issue of pain management is difficult for the lay person. I am challenged to understand the vast amount of research on pain and its relationship to the nervous system. The work undertaken by those in the Noigroup , Soma Simple, adiemus, Diane Jacobs (all found on Face Book) and of those I have previously cited brings us up to date on the neurobiological evidence, but it is nonetheless not easy to comprehend.

I have been muddling through this one by David Butler and the other books suggested to me by Nick and other international physiotherapists, occcpational therapists and neuroscientists for two years now and it has not been an easy task. This month being National Physiotherapy month, Nick was interviewed on TV this a.m. For several years  he has been awarded “The Best Physiotherapist in Halifax” by The Coast magazine. I have been most fortunate to have learned so much from him and some of my other colleagues at Dalhousie University with whom I worked closely for many years.  These are evidence based,PhDs with their own research programs, many of  whom are bringing about change to old ways of thinking. I wish for all of you a physiotherapist who understands and, even more, one who can explain neuroplasticity and pain. If one is stuck in the old physio tradition one cannot proceed further unless time is spent by the therapist explaining in lay terms the ways in which one can train the brain and the strategies to employ so that one does not always rely on professionals. If your physiotherapist/physical therapist does not, or cannot explain neuroplasticity to you, search for one who can. It is the way of the future for those involved with helping people in pain. My own fibromyalgia flare ups have decreased by half during the past two years; for that I am grateful. But of course we are now faced with two dilemmas. First, what if a person cannot  afford a therapist? For them I would advise that they either go on line or get the books I have highlighted over the past several years from the library. It is difficult to do reading by oneself, trying to understand the technical language of pain and the brain. PBS,  among other TV stations have presented many documentaries on the brain which are very helpful. Face Book information is also available and up to date research is forthcoming on FB from the experts around the world. The second issue to be addressed is how to do strengthening, including aerobic exercise without becoming extremely fatigued. Once again, 15 minutes twice a week can suffice initially, longer only becomes repetitive. Those of us with fibromyalgia are subject to great fatigue, so we must proceed with caution and let our common sense guide us. The high tech gym with the ‘appropriate’ fashionable clothing has been part of the hype of the youth culture. The less we feed into it the more sensible we become. Frenetic activity, wild perspiring, hour long puffing is not the sign of a healthy person, rather one who is pushing to excess. Walking is still the cheapest and best way to begin a regime of getting fit.

So these are my musings of the past few weeks as I struggled with a month long cold. Off to do my daily meditation, then my 15 minute walk; after weeks of raining, the sun is out. 🙂

About Barbara Keddy

I am a Professor Emeritus, School of Nursing, Dalhousie University, Halifax, Nova Scotia, Canada. My B.Sc.is in Nursing while my MA. and Ph.D. are in Sociology. I am married, a mother and grandmother living on the east coast of Canada. I have personally lived with fibromyalgia for about 40 years. I published a book with iUniverse in 2007. This book detailed living with this condition and allowed the voices of twenty women who have fibromyalgia to tell their stories.
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12 Responses to Fibromyalgia and pain management strategies

  1. Phyllis Morgan says:

    Hello,

    I have enjoyed reading your blogs and hope you have gotten over your cold. I am really interested in finding more about the “why?” part of fibromyalgia. I have been diagnosed for 3 years, but can remember having symptoms beginning about 15 years ago. I am really interested in your book and will look for a copy the next time I go to the bookstore. I don’t know how you tolerate the weather where you live? I have always wanted to relocate to the Pacific Northwest, however, I am rethinking my decision. I don’t think I would fare well in the cold and damp.

    Thank you for the website. I love the quotes!

    Phyllis

  2. Hello Phyllis and welcome to the website. You will find many blogs with comments from readers which I hope will be helpful. It is true that coastal areas are difficult for those of us who are affected by damp, cold and rain. I often wonder myself why I live in such climate when I know I do better in dry desert areas. But it is what it is and too late in my life to face upheaval of moving. Keep in touch, Regards, Barbara

  3. Hello dear Barbara – I hope your MONTH-LONG cold is gone (that is just WAY too long to battle a cold!) Yikes. Your observations on pain here are so interesting, and surprisingly universal no matter what the source of the pain.

    I’ve been seeing a specialist at our Regional Pain Clinic here at the Royal Jubilee Hospital in Victoria for chest pain caused by my coronary microvascular disease Dx. It’s been amazing to me to see the wide range of (free!) Pain Clinic programs for us – from Health Recovery Tai Chi to Yoga and even Laughter Therapy. This in addition to my portable little TENS unit that I wear clipped to my belt from morning til night, its little electrodes taped snugly over my chest all day. This amazing, non-invasive, non-drug therapy has significantly reduced my nitroglycerin doses.

    I was also thinking of you today while reading a Psychology Today post by former law professor Toni Bernhard – who went to Paris 10 years ago on vacation, got sick, and never got better. Her post is at http://www.psychologytoday.com/blog/turning-straw-gold/201105/10-tips-10-years-sick You may already know her work – I’ve just sent her your link, too.

    Have a lovely day – our weather here on the West Coast has been dismal. We’re calling it “June-uary”…..

    Hugs
    C
    XOXOXO

  4. Hi Carolyn: Yes, the cold has left, but the earaches continue. It has been equally as dismal weather-wise here in Nova Scotia. The non invasive strategies you mention all sound wonderful! We are so lucky in this country to have access to this kind of health care (while not perfect in Canada there is much to be said for universal health care!). Pain is the great equalizer, isn’t it? Trying to wean myself off Aleve as it seems to raise my blood pressure, but it sure helps the pain. Everything that is a medicine for pain seems to have side effects! We must meet one day as your comments are so uplifting for me! As always, B.

  5. Mechelle says:

    I am soooo happy that I found your site, and will use it as a pick me upper, and a point of help when the world starts making me feel like I’m going crazy. I was diagnosed with fibro about three years ago. Immediately after I had my son my body went out of whack, I couldn’t walk without pain, my back felt like I was experiencing labor pains months after I delivered. I was just in pain and suffered a ton of other symptoms. It took the docs about 8 months to finally diagnose me with fibro. this is after I had seen about 15 specialists, and a few ER visits. It has been a life changing thing for me, and sometimes can be quite depressing. I struggle with how to cope and have fully accepted that this is my new life. It took me a while to get here. Ive been on so many drugs over the past 3 years it’s not even funny, and now understand why there is a drug problem in this country. Sometimes I hesitate to call my doctor because it seems there’s really nothing to do but ride out the latest symptom, but it’s scary at times. If I go to the ER, Ijust get drugged and sent home. No one really knows what to do, or the speculate that you are nuts or a hypochondriac. It’s quite obvious somehting is wrong, but this Fibro tihng is like a ghost, and people have to believe in ghosts to think what we have is real. About 2 weeks ago my itching started, felt like I had the flu, throat itched, and then my face swole up. Of course I was told this had to be another allergic reaction to something. Lasted a little while and then it went away. I just laugh when things like that happen now. However, when the pain prevents me from carrying out my daily activities or care for my kids, it’s no laughing matter. I miss the life I used to have, and now feel I have to depend on others. I was such an independent person before and I think this is one of the hardest things dealing with fibro. There are times when my fatigue caused me to fall asleep while driving so even that is limited. I also try to stay away from sugar, but my body CRAVES sweet things. I haven’t had anyhthing sweet in over two weeks, and today I was soo stressed that I ate about 3 packs of my fav chocolate, and didn’t regret it one bit. 🙂 As long as I don’t do it daily. Well, let me stop rambling….so happy I found this site.

  6. Dear Mechelle, I too am so happy you found my site. I hope that it is helpful and that my book will set the scene for all that followed in these blogs. You are definitely not alone and sometimes this journey is a lonely one! Best wishes, Barbara

  7. Bar says:

    I never know who to talk to about my Fibromyalgia and often am not sure I want to at all. Having been in my youth a budding sport woman, one who was into dance and gymnastics and martial arts too and a child brought up with parents with some serious medical conditions, I have always been strong of body. When FM first snook its way into my life I was devastated, shocked, bewildered. Since this time I am now reasonable fit, more so than many others to be honest. Due to having done weight lifting to a rather serious point in my early 20’s, how I deal with what we call pain is what I term as pushing through a barrier. So I cope with FM and no one knows that I have adapted my body movements when picking up the kettle or opening a door etc. And the bigger they physical challenge the more I cope but my tiredness is truly terrible. I feel strong and feisty, a fighter and cheated all the time. I keep going, I work part time, live in a rural environment, I am pregnant at age 42 (8 weeks left now) and I feel cheated, I am doing my bit. Brain Fog is my biggest issue. I have a degree in interdisciplinary literature and I can not get hold of a single thing any more. Words, information, it all alludes me. And let’s face it, the world is geared around, ‘you don’t have the right to speak if you can not back up what you are saying’! I have lost the ability and so have stopped talking and writing. I am terrified of anyone asking me a question. Sometimes I loose simple words like table, I can see it in my mind but can I find the word, NO. Only my first daughter (yes my second child due soon is a girl too :)) does not mock me or push me like I am an idiot. To the rest oft he world I am a quirky moron, to my daughter I am a frustrated and trapped woman. I have been reading avidly for months now, in hopes of sparking up some internal correspondance with my brain, nothing is happening. It is just more information becoming trapped inside my head with no outlet. If it helps other people I was also an outsider artist for a while, played guitar too and wrote songs. I hope one day to find a way forward but the process is so lonely and demeaning.

  8. It certainly is a difficult thing to try to figure out when to talk about fibro and with whom. Your story is so similar to the rest of us. Thank you so much for your thoughtful comments, Regards, Barbara

  9. Julia Bjerre says:

    Hi Barbara,

    I just saw a link on facebook to your site and was particularly interested in pain strategies. I have chronic daily headaches, legs that ache like I have a really bad flu, Tmj with neck and shoulder involvement, runny nose and eyes and an occasional rash on my face. I am still trying to figure out if these symptoms are related and what might be wrong with me. My lower back and legs are so bad now that I thought I might pick up some tips from you even if I don’t have fibromyalgia.

    I noticed some of the commentators spoke about sugar being bad for them. My sister has Lyme disease and sugar is a huge no-no as it feeds the critters as we like to call them. She was originally diagnosed with fibromyalgia before she tested positive for Lyme. Do you think there is a relationship between the two diseases? Canadian Lyme tests are worthless by the way as they use the Elisa test as are many of the tests the US drs order as well. The Western Blot is better and there is a great lab called Igenex for Lyme testing. Anyway, I’d like to hear your thoughts on Fibromyalgia and Lyme.
    thanks!

  10. Hi Julia: I really don’t know very much about Lyme disease. What I do know though is that anyone with a chronic condition like MS, for one example, often develop fibromyalgia (not necessarily however). It seems reasonable to assume that there might be a relationship between the two. Since fibromyalgia is the result of an overstimulated nervous system and not an actual disease, but a syndrome, calming the brain pathways by the means I have suggested elsewhere is the only ways I know of to work with fibromyalgia. If you have a diagnosis of fibromyalgia at least you might find some mental relief regarding living in the dark without knowing what is causing your symptoms.
    Best wishes to you and your sister.
    Barbara

  11. Darin Paillant says:

    Pain management is sometimes very difficult and requires a lot of energy for the patient to manage it successfully, meditation also helps. ;:;*:

    Many thanks
    http://www.melatoninfaq.com/

  12. You are right, Darin. Thanks for your comment,
    Barbara

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