For over a decade, Holly Donald suffered from debilitating symptoms of Fibromyalgia. Changing her diet has changed her life.
With two young children and a demanding job, 36-year-old Holly Donald attributed her poor health to the pressures of a hectic lifestyle. Exhaustion, cramp, joint pains, Brain fog, and migraines were a daily occurrence for the local authority supervisor, impacting on her relationships with family and friends.
It was only when her crippling symptoms worsened to the point where she could no longer fasten the buttons on her children’s school uniforms or brush her daughter’s hair that she finally sought medical help.
Holly was eventually diagnosed with Fibromyalgia and discovered that her chronic disease was incurable and could only be treated with strong steroids and antidepressants.
The news left her stunned but determined to take control of her condition. She began by researching the best diet for people with Fibromyalgia and was encouraged by what she discovered.
Initially, she introduced herbal medicines to her daily routine, followed by a juice detox to rid her body of toxins. Although her symptoms improved, the diet was too extreme for her to maintain, so she continued to look for other options.
It was a year after her diagnosis that Holly was introduced to the Arbonne Programme by a friend. This advocates a plant-powered, vegan-formulated, gluten-free diet that does not contain dairy, soy, nuts, artificial colors, flavors or sweeteners, or genetically modified ingredients.
Although not designed to target conditions such as Fibromyalgia, it echoes the advice offered by nutritionists on which foods sufferers should eat and avoid. Whilst not suitable or appropriate for everyone, Holly says that her new Fibromyalgia diet has transformed her life.
By making small changes to what she puts into her body, Holly now feels she is controlling her chronic condition, rather than the chronic condition controlling her.
Her diet now consists of whole foods, never processed, and she avoids ready meals at all costs. Since starting her Fibromyalgia diet, she no longer has a glass of wine or a bar of chocolate as a treat to unwind at the end of the day.
Instead, her daily meal plan includes protein shakes and detox tea, alongside vegetable-rich dishes. For example:
Breakfast: A typical breakfast might be a vegetable omelet consisting of three eggs with broccoli, asparagus, cauliflower, and onion.
Lunch: Usually a protein-packed shake made with almond milk and frozen berries.
Dinner: Cauliflower Shepherd’s Pie made with cauliflower florets, cumin, onion, garlic, celery, carrots, tomato paste, thyme leaves, and stock.
Almost two years on from her initial diagnosis, Holly is now completely symptom-free and, as an additional bonus, her children are also enjoying and benefitting from a healthier lifestyle.
Here at Ronty Rhodes Solicitors, we are not medical experts, therefore, cannot confirm whether or not special diets can be used to treat the symptoms of Fibromyalgia.
Instead, these articles are provided as a point of interest and to help keep you up-to-date with news and information about chronic pain conditions. If you have any questions or concerns regarding your health or diet, please consult your doctor or local GP.
Although we cannot provide medical recommendations, we can help you to claim compensation if your condition has been caused by an accident, injury, or traumatic experience, such as a car accident, that was not your fault, as well as clinical negligence.
It isn’t always easy to find someone to help you because there’s not just one type of doctor who treats fibromyalgia. But it’s important to find a doctor who understands your condition and will work closely with you to manage your symptoms and help you feel better. How do you find the right doctor for you?
Some people with fibromyalgia are treated by their primary care doctors or internal medicine doctors. However, you may want to ask whether you should see a specialist. Specialty doctors who most often treat the condition are rheumatologists. Rheumatologists treat inflammatory, often painful conditions that affect the joints, muscles, bones, and other organs. Pain specialists and neurologists may treat fibromyalgia, too.
There’s no rule as to what type of doctor you should use to help you manage fibromyalgia. However, make sure he or she has an interest in and knowledge of fibromyalgia treatment.
Finding a doctor who can lead your care and help you manage fibromyalgia is your first priority. But you may benefit from working with a team of healthcare providers that can help you manage specific symptoms. The team might include a physical therapist, sleep specialist, massage therapist, acupuncturist, cognitive-behavioral counselor, and others.
Getting recommendations from friends, family, other physicians and your insurance provider is one way to find a doctor. Another is to see whether you have a pain or rheumatology clinic in your area. Oftentimes, these clinics offer care from several members of the fibromyalgia treatment team all in one location.
Just because a doctor or other type of healthcare provider knows about fibromyalgia doesn’t mean he or she is the right doctor for you. A few questions you can ask to help you decide include:
Many people with fibromyalgia check out a number of doctors until they find the right one. It’s worth the effort. You can greatly improve your symptoms when you have a knowledgeable and focused doctor, along with your own participation and motivation. In addition to asking your insurance provider, you can search Healthgrades.com for providers who treat fibromyalgia.
A good night’s sleep is as important to your health as eating right and exercising regularly. That’s especially true when you have fibromyalgia. Getting enough quality sleep can ease the pain of this arthritis-related condition and help you feel refreshed.
Fibromyalgia can change your brain wave patterns, which can rob you of slow-wave sleep, the deepest stage of sleep. It can also bring on other problems, such as restless legs syndrome, which can make sleeping through the night a challenge. When you don’t sleep well, fibromyalgia can feel even more uncomfortable.
Don’t let fibromyalgia steal your sleep. There are strategies you can try to help yourself get the rest you need to feel your best:
Be as active as possible. Exercising during the day is one of the best ways to help you get a good night’s sleep. It is also one of the best things you can do to treat fibromyalgia. Start with walking. Gradually and over time, try going farther and faster. Avoid working out within three hours of bedtime, though, so you have enough time to wind down.
Darken your bedroom. Light can keep your brain awake, making it harder to sleep. If streetlamps, moonlight, or early morning sun peaks in through your windows, invest in room-darkening bedroom shades. If you get up during the night to use the bathroom, use a nightlight to show the way rather than turning on a bright overhead light.
Limit caffeine and alcohol. Avoid caffeine in the afternoon and evening. It can keep you from sleeping soundly. As for alcohol, you may be able to enjoy a glass of wine with dinner and still sleep well, but skip the nightcap. Alcohol around bedtime can make you drowsy, but cause you to wake up in the middle of the night.
Nix long naps. For some people, a short midafternoon nap can improve their day, but for others, it’s the recipe for lost sleep at night. If you’re among those who doze off during the day, don’t nap for long. To prevent your nap from affecting your sleep at night, set your alarm for an hour, and get up when it goes off.
Talk with your doctor. If you are having trouble sleeping despite all efforts, ask your doctor about participating in a sleep study. It can help identify any other disorders you have that may be disrupting your sleep. It’s thought, for example, that people with fibromyalgia may experience the same breathing pauses during sleep that affect people with sleep apnea. If this is the case for you, a CPAP machine (which increases air pressure in the throat to hold it open during sleep) may be helpful. Your doctor can also prescribe sleep medicine, if necessary.
I am launching THE FIBROMYALGIA CRUSADE! I am a Fibromyalgia patient, not a doctor, scientist, researcher, or Ph.D. I am a real woman living a real-life with a real disease that receives little to no respect or understanding from the world at large. I became ill in 2005 and have devoted the last 5 years of my life to overcome the debilitating and miserable reality that is living with Fibromyalgia.
My medical history is complex. My journey is fraught with as much failure as success. I have worked harder than I ever have for anything in my life to regain a quality worth living, and with an amazing support network is amazed to say that not only do I survive, I thrive! But my heart is breaking…
I started this blog, “Chronicles Of Fibromyalgia”, last March. It was a way for me to dissect and therefore begin to understand how life had deposited me in the strange and foreign land I found myself residing in. I also dream of a career as a writer and utilize the blog as an outlet to exercise those skills. But I was private, I was unsure. I was embarrassed by the truth of my reality and kept it to myself, all the while progressing emotionally and physically in leaps and bounds as I began to unravel the tangled ball of yarn that my life had become.
And then at the end of July, mere days before my 34th birthday, I had 2 strokes. I nearly died, came within a hairsbreadth, but have miraculously recovered and with treatment am going to be just fine. This near-death experience woke me up! It renewed in me a responsibility to my fellow man, Fibromyalgia–sufferers specifically. I stopped caring about acceptance or judgment and went public with very intimate and private details of my struggle. I utilized Facebook and my blog as a way to reach out to other normal everyday folks trudging through the grim and dismal misunderstood darkness that each day is when one lives with Fibromyalgia.
The response has been overwhelming! People have been crawling out of the woodworks to link up and gain support, a sympathetic ear, a shoulder to lean on that truly understands how awful life can become when one is forced to live sick in a world of healthy expectation. I have knitted together a small network of fellow fibrates that are all singing the same song, just to a different tune. As I have become aware of the story after story following the same devastating outline I have become enraged! There is too much loss and suffering and ignorance surrounding this condition. With every beat of my heart, I want to change the reality of living with Fibromyalgia. Take it from a doubted and questioned condition and give it the validity it deserves. Making people recognize the suffering and loss and devastation is indeed real, as real as the air we breathe, and I believe if the THOUSANDS of Fibromyalgia patients out there came together, stood strong as 1 voice, it can be done!
For Fibromyalgia Awareness Month, I wanted to share my illness journey here on the blog. My story starts eight years ago. It wasn’t a climactic beginning. It was just achy low back pain that got worse the longer I sat writing my M.A. thesis. It seemed like a common enough problem to have, except for the fact that I was 23. The nurse told me to take ibuprofen 24/7 and stretch. Spoiler alert: it didn’t work. About a year later, my body gradually began to fall apart, limb by limb. My back pain worsened. My knee gave out. My shoulders become too painful to allow me to type. This is what the doctors call “gradual onset”.
I thought I was losing my mind.
My doctor at the time told me all she could do was suggest Robaxacet. At this point, I was starting my Ph.D. The physical demands of reading and writing 24/7 began to take their toll, exacerbating my pain. Daily functioning on my own became increasingly difficult. My fiancé (now husband), who was living 4 hours away, had to come every weekend to help me with the chores (groceries, cleaning, etc.) that I could no longer do. In retrospect, I think the stress of the program and my fear about not being able to meet expectations, as well as not being able to understand what was happening to me, pushed my body past the point of no return. After that, I developed more of the classic fibromyalgia symptoms, like insomnia, fatigue, and digestive problems.
I was fortunate to have been referred previously to a pain clinic for pelvic pain. This meant I was able to see a pain specialist for my musculoskeletal pain within the same year all my fibro symptoms exploded. In March 2012 he diagnosed me with fibromyalgia.
I was so relieved after my diagnosis that my symptoms had been validated – and given better medication than NSAIDs. I was given tramadol, which reduced my pain, and doxepin, which helped me to sleep. But I still hadn’t absorbed yet what this diagnosis would mean for my future. After my diagnosis, it became obvious that even with treatment, no amount of accommodations would allow me to continue my Ph.D. I had tried everything I could think of so I could stay – withdrawn from my TA position, put in place disability accommodations to allow me to submit work late, bought expensive adaptive devices, and installed voice recognition software.
Feeling like my life was spinning out of control, I started having panic attacks on campus. When the spring term ended, I went back home to move in with my fiancé and decided to withdraw from the Ph.D. program.
With huge relief, I went on medical leave from my studies. However, I was immediately confronted by the problem that my days were empty of activity or responsibility. I remember dragging myself out to a local cafe in the afternoons while my fiancé was at work. I wanted the anonymity of a public place, where I could feel ‘normal’ for a while. It was the only cafe I could go to because the chairs were sensible rather than funky. Still, I had to bring my backrest with me, which generated stares from other patrons. I would cover it with my coat in order to try to hide it from attention. I could no longer type or hold a book due to pain, so I was embarrassed to be sitting at a table without a laptop or reading material, like everyone else. I listened to audiobooks or free online course video lectures instead. I would set up my tablet so that it looked like I was working, rather than listening and staring around. I envied all the other people my age, surrounded by papers, purposely tapping away on their computers. The goals that I had been pursuing were on pause, indefinitely. I grieved for my old life. I pushed myself to go to the cafe, even on days I experience brain fog or fatigue because staying home felt like giving up. I spent that year in a state of shock. I was always someone whose identity was wrapped up in my work. I didn’t know who I was anymore.
Gradually I started trying to put the pieces back together. When I got diagnosed with my chroniccondition all the information about exercise seemed so out of touch with the reality of my life. At the time, I had trouble bending forward, which meant I needed help with basic tasks like shaving my legs. I had trouble getting up or down from sitting on the floor. I rarely took the stairs and had trouble walking or standing for longer than ten minutes. Since I was already tired, sore, and busy then I wasn’t going to be able to go to the gym. I couldn’t afford a personal trainer. With my back pain, there was no way I could participate in the group yoga classes I used to take in university. Even more frustrating was the fact that all the research I came across proved how beneficial exercise is to health. I knew that I should exercise but I felt like I couldn’t.
I found two at-home instructional DVDs in yoga/pilates and tai chi that I was actually able to do, which helped me to improve my physical functioning. I started seeing a physiotherapist who put together a thorough stretching routine for me to do daily. Without a doubt, this is the single most effective thing I tried to improve my health and well-being. My pain decreased and my quality of life increased.
I was fortunate to be referred to a Cognitive Behavioural Therapy program by my pain clinic. I found participating in the course very valuable for learning tools to manage the negative thoughts and feelings that accompanied my fibromyalgia. One of the core parts of the program was learning to identify negative thinking traps or ‘cognitive distortions. These are thoughts that “sound rational and accurate, but really only serve to keep us feeling bad about ourselves.” I learned that I tend to think in “all or nothing” terms – a cognitive distortion. I would say to myself things like “if I can no longer pursue my career, I am a failure in life”. In CBT, I learned to challenge these distortions with the reality of each situation. For example, in response to the statement above, I challenged it by saying “While being in pain means I have to do less, that does not reflect on my personal worth, nor does it mean what I can do is meaningless”.
I was also referred for a Mindfulness–Based Stress Reduction course by the pain clinic. In this course, I learned to be more mindful of the present moment. I learned that worrying about the future or dwelling on the past, only makes me suffer more in the present. It’s better for my quality of life if I return my focus to the next best thing I can do for myself at this moment. Critically, the MBSR course reminded me that, even with pain and flare–ups, there are small moments of enjoyment, if I only stop and notice them – the taste of a good meal, sharing a hug, a sunny day, or a favorite hobby. One of the key lessons I learned through mindfulness is that my thoughts, feelings, and sensations, no matter how difficult, are changeable, like the weather. When I hold on to the fact that even my darkest moods will eventually lift, I feel calmer and more in control.
In 2014 I started a part-time distance program for social work and completed the first year. But it wasn’t to be. I got a cold over the 2015 holidays and suffered the worst fatigue and brain fog I’d ever known. At the time I was just starting to look for a social work practicum placement. There was no way I could commit to working 15 hours a week out of my home. For the second time, I had to withdraw from school.
I felt completely overwhelmed at the outset of my fatigue relapse last year. First, there was the emotional reaction to a new situation: anxiety about whether it was here to stay, frustration that life was about to get more difficult, and grief at the prospect of losing what abilities I still had. Secondly, there was the practical challenge of figuring out how I would cope, like what new treatment options to try or how to manage my daily routines and responsibilities. Lastly, I faced the impact of a relapse on my relationships, such as the increased caregiver burden on my partner, and feeling less able to be present with family and friends.
My relapse brought me back to the beginning of my illness journey and how I coped after my diagnosis. I was able to use many of the lessons that had been learned the hard way the first time around. In essence, what I have learned is that I have the power of choice over what I focus my attention on each day. Through challenging negative patterns of thinking, being present, taking in the good, and pursuing an enjoyable hobby, I try to emphasize what enriches my life and let go of what doesn’t. Of course, there are always bad days and I don’t believe any amount of positive thinking frees us from ever experiencing difficult times. I personally have found, however, that changing my worldview has dramatically lessened the amount of suffering I go through during relapses and has improved my quality of life. I spent that winter using the time to learn new things. I taught myself calligraphy, I read, and I wrote more often on my blog.
That spring, my energy began to slowly improve. I found a kind of peace in accepting that whatever I do next, needs to allow me to work with my body and not against it. I think that’s why blogging and writing have ‘clicked’ more for me now than when I first started. I have found that grieving for your old life and finding acceptance in your new life is an ongoing process, not a one-and-done kind of thing.
Being at home allows me to respond to each day as it is. I’m fortunate to be able to stay at home. I sleep in late because without ten hours I am a brain-fogged zombie. I can’t type because of shoulderpain but I can use speech recognition software. I stretch, do gentle exercise, walk, and make sure I move around during the day. I balance my activities with self-care, which is how I am able to live more fully, even with fibromyalgia.
In the summer of 2015 I felt well enough to finally plan my (fibro-friendly) wedding. On a beautiful August day, I married the man I’d fallen madly in love with eight years earlier and who has been my saving grace through this whole journey. He didn’t blink when it came to assuming caregiving responsibilities – he does the housework, the laundry, and the dishes on top of his full-time job. He is always understanding when we have to change plans or just stay at home. Most of all he is so supportive. He celebrates the small accomplishments of my life without ever making me feel ‘less than.
I’m grateful for how I’ve grown through encountering all of the challenges that come with chronic illness. Learning mindfulness meditation and focusing on the present has given me a more helpful perspective. I’m a happier person when I remember to ‘stop and smell the roses. I feel like I’ve become more patient, more adaptable, more assertive, and more accepting than I was before fibromyalgia. I’m proud of making it through every day, especially on the tough days where no amount of self-care stops your symptoms, and you just have to hold on to the knowledge that it will pass. Everyone living with chronic illness should be proud of the strength they have developed to manage daily life.
My new motto is something I read shortly after my diagnosis – “It’s not the life you imagined, but it’s a good life nonetheless.” It’s something I hope for myself and everyone who lives with fibromyalgia.
When is the last time scheduled a rest day? I am not talking about spending the day in bed because your chronic illness flared and made leaving it impossible. What I am asking is, when did you last choose a day to relax, give your body a break, and allow yourself to chill out in front of the television for no reason other than you wanted to?
It is like all eyes were on me and that unless I was completely unable to leave my bed, I would be judged for not pushing myself to catch up on everything that I had fallen behind on.
The bad part about that way of thinking was that I wasn’t showing any love or consideration for myself. My life became a full-time punishment. If I was in bed, I was being punished by my chronic illnesses.
If I was able to get out of bed, I was punished for the time when I couldn’t get out. Over time I became bitter towards not only my family, but friends, acquaintances, and pretty much anybody who was alive.
After a decade of punishing myself, it became clear that I needed to give myself permission to take a day “off”. To do whatever I wanted, even if that meant doing nothing but binge shows on Netflix or Hulu all day. I had to love myself enough to not feel like everything I did was a punishment.
A day of planned rest may not always rejuvenate me physically, but it sure does wonders for my mental state. Rest days allow me to clear my head, breathe, and remember that I will be of no use if I continue to run myself into the ground.
A funny thing happened after I began allowing myself to enjoy life, I fell in love with living again. I will always be chronically ill. Yes, my chronic pain has been well managed for the past two years and continues to be, but there are no guarantees that this will always be the case.
I don’t know what the future holds. What I do know is that no matter what my chronic diseases decide to throw my way, no matter what new illnesses or injuries I accrue, I will never punish myself or my body the way that I did before.
I believe that those of us with central sensitization, that is, fibromyalgia and chronic fatigue, or to call it by another name -“post-traumatic stress disorder”, all suffer from chronic anxiety/ fear. These terms are, in my view, interchangeable. They can keep us imprisoned without recourse and in a state of hopelessness. In fact, the US Department of Health and Human Services has developed a new name that can even be part of our repertoire, that is, “Systemic Exertion Intolerance Disorder”.
In short, more diagnostic criteria are available for health professionals who are interested in tagging us. It is true that we have little energy along with our other challenges, but are we just a collection of symptoms?
For almost a decade now I have been writing about how those of us with these conditions, have options regarding a better quality of life. Yet, in spite of my preaching, I find myself, like others, often recounting yet another symptomof central sensitization almost ignoring the gestalt. Note for example the hundreds of comments or ‘hits’
I have on the two most popular blogs 1) itching and 2) tingling and numbness of arms. One would never have imagined that these two symptoms would be so problematic! Yet, those of us who suffer from specific symptoms focus on them often to the exclusion of what can be done to improve our daily lives.
The intent here is to gather together the ways in which we can begin to take control of our lives in lieu of medicalizing our very existence. After all, I have often written that central sensitization is not a disease but a dis-ease.
1) Talk therapy: We have become highly sensitive persons either because we were born with that characteristic or developed it early in life. We have had a past trauma that has resulted in repressed emotions that need to be attended to by a professional therapist.
2) Mild to moderate exercise, in particular walking.
3) Mindful Meditation.
4) Bodywork involving touches, such as massage, reflexology, chiropractic, Jin Shin, physiotherapy, or osteopathy.
5) Movement therapy such as chi gong, yoga, and tai chi.
6) Avoiding over-stimulating and stressful situations as much as possible.
7) Taking on a new, repetitive, creative undertaking that will help us change our brain: drawing, painting, quilting to name a few.
8) Avoid caffeine and other foods that are too stimulating.
9) Do not over-medicate. If possible medical marijuana through oils or other edibles is a good alternative, especially in regard to sleep.
It must be our intent to change our brain. Unless we embrace the concept of neuroplasticity ( that is, the capacity of our brains to change) and understand that it is up to us to become the masters/ mistresses of our own fate we will live forever in fear and hopelessness, dwelling on symptoms.
On a personal note: I must practice what I preach. It isn’t easy.
” What I want for my fans and for the world, for anyone who feels pain, is to lean into that pain and embrace it as much as they can and begin the healing process”, Lady Gaga
There has rarely been such public awareness of fibromyalgia as there is now that Lady Gaga has become public about her own suffering. While there are thousands of those of us who suffer from the debilitating pain and fatigue of this syndrome, many still believe it is malingering.
Unfortunately, it takes a public figure to allow the disbeliever to at least entertain the possibility that this condition, not a disease, but a dis-ease, is real. I am not a fan of pop stars and have not even seen Lady Gaga perform. In fact, I know little about her, but why does it take a widely known singer to convince the public that those of us with highly sensitive, over-stimulated central nervous systems live in a world encompassed by pain and a multitude of other ‘symptoms’?
We live in a world of the constant bombardment of our senses. All of us have experienced past trauma of some sort. Many can easily move on while others continue to take more chaos into our very being. Watching TV news, reading a newspaper, or internet news only heightens the sense of danger we feel for ourselves and others. It is rampant about death and tragedy and those of us with FMS and CFS have systems that can no longer absorb more trauma.
We can be called whiners, complainers, and acting victims but the reality is our pain is real. It is the result of prolonged anxiety such that the mind closes down and the body takes over. Generally, it stems from childhood trauma which could be abusive or unloving, but not necessarily so. It could also be the result of being extremely hypersensitive and traumas, not necessarily from childhood, have exacerbated our central nervous systems to a point of no return. The emotional trauma leads to real physical trauma.
What is to be done? Our minds need stillness, calm and quiet to heal our bodies. Living in the moment with compassion for our injured selves allows us to begin the healing process. I am struck today, September 22, 2017, by the cover picture and story in the Globe and Mail about the UN International Day of Peace. Ottawa citizens took part in mindfulness meditation for peace on Parliament Hill, led by Dr. Jon Kabat-Zinn with nearly 1,000 people participating.
Instead of reading about a blustering threat of killing an entire nation, earthquakes, flooding, hurricanes, hate crimes, fascism, Nazi groups, and race and gender injustices that add further psychic pain to our already over-burdened brain, I could see some semblance of hope. There IS some! But, for our own demons peace has to come from within. Medications, talk therapy, and support groups can help but we have to become experts in our own minds. We have to heal ourselves.
There is no cure for an already overburdened central nervous system, but we can learn to treat that anxious mind by being at peace living in the moment, finding comfort in perhaps odd ways that are unique to us, and living with joy that may be fleeting, but is there to call on when we need it. I have a piece of fabric that makes me smile when I look at it.
I imagine it is me looking in a mirror, trying to see into my brain all the garbled thoughts that make me anxious. I can “lean into it” as Lady Gaga suggests and sigh at that mind that hangs on to past trauma. What a fiasco… you gotta’ laugh…
” The greatest heroes are those who do their duty in the daily grind of domestic affairs whilst the world whirls as a maddening dreidel”, Florence Nightingale
A dreidel is a four-sided spinning top. I loved the above quote but knew not what that word meant. It makes so much sense to me now as the world is certainly spinning out of control and it is the hyper-sensitive, traumatized person who suffers the most, especially if she or he works in a high-stress environment.
This week we celebrated the birthday of Florence Nightingale and I am reminded of the many nurses who write to me on this website suffering from fibromyalgia. There is little doubt that Nightingale herself was plagued with this condition. Those who do their work as responsible caring people live with the daily suffering and the trauma of others. While absorbing the pain of their patients they are often living with their own.
Those of us with fibromyalgia have an overabundance of empathy. It is not easy to disregard the emotions of others; we always anticipate the needs of people in real or perceived distress. Nurses are at the forefront where fear and anxiety are paramount and living with fibromyalgia intensifies the daily challenges. As patients suffer from anxiety their struggles are inter-meshed with their own. Oftentimes it is impossible to separate the two.
I have just completed a book about nurses in training in the 1950s and it is currently at the printers, due for release in June 2018. This book describes the lives of student nurses who worked under harsh conditions while working/studying to become RNs. They are stories of the difficulties these women experienced during their three-year training period.
The devotion to their profession and the uncomplaining ways in which they did their duty is awe-inspiring. Nurses exemplify the best of human qualities. But sometimes their own emotional capacity is overwhelmed and too anxiety-provoking. While this book is not at all about fibromyalgia, nonetheless it does exemplify the intense devotion to the caring work of those who make up the vast number of health professionals. Nurses are unsung heroes and heroines.
” 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 behavior 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 identify myself as my pain to the point where I don’t move coming from a place of fear.
Repetitive actions, long workouts, and strenuous exercise are often harmful, not only to those who have fibromyalgia but to 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 that 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-massage. 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 is very strong physically, does 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 a while, particularly if we have had the condition for a long time. Obviously, the younger we are the better our 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 brains. 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 bandwagon: 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 into 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 layperson. I am challenged to understand the vast amount of research on pain and its relationship to the nervous system. The work is undertaken by those in the Noigroup, Soma Simple, Adiemus, Diane Jacobs (all found on FaceBook), and those I have previously cited bring 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, occupational 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 online 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, has presented many documentaries on the brain which are very helpful. FaceBook 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, but rather one who is pushing to excess. Walking is still the cheapest and best way to begin a regime of getting fit.
