A detailed guide to Chronic Fatigue Syndrome (CFS), including its symptoms, causes, and effective treatment strategies to improve energy and well-being.
A few months later my husband graduated with 2 BS degrees in Finance and we were ready to start our life for real. During the first 5 years of our marriage, he had been completing his undergrad full-time and working full-time. This had left us a bit distant and out of touch with each other. We were really looking forward to some re-connecting and had scheduled a week of “vacation” together while he graduated and we moved. We were living in San Francisco and prior to graduation, he had secured a new job, in his field, on the Peninsula. I had decided to buy myself a dog as a present for his graduation and was really ready for life a bit slower, easier, and cheaper than city living offered.
So in my type A+++ fashion, I set out to do all of this in 1 week. Bam! Enter my own personal hell week. Do you know when they talk about a “trigger event” for Chronic Fatigue Syndrome & Fibromyalgia? Well, here is mine: The week he graduated we had a large graduation party with tons of out-of-town family and friends, moved 2 days later, and got the new puppy the day after that. Then surprise! My grandfather passed away so I had to fly back to Illinois for a whirlwind funeral, all during the week my husband and I were supposed to be getting reacquainted with each other. Oh, how many times we have talked about if we had just gone to Mexico and taken a real vacation instead of this madness, maybe I would not have gotten sick…
But I have never felt the same since then. I started having lots of physical pain and exhaustion. I felt like the muscles in my legs were separating from the bones and like my abdomen was going to either implode or explode, but could not tell which. I could not make it to work on time or through a whole day of work. I felt like I was moving through quick-sand. I would sleep 10 hours a night and wake up exhausted. I was in hell. I ached everywhere and felt like I was constantly on the verge of getting the flu. I was emotionally and physically in chaos. I immediately stepped down from my executive position and went into a 4 day a week assistant-manager job. I knew after the struggle with pancreatitis that whatever this was, I could not be focused on my career as well. My solution was to stop taking Tricor, the triglyceride medicine I had been put on after the side effects from Lopid were discovered. Even though I had been on it for a few months I was convinced what I was going through was another adverse reaction but to no avail. I saw doctor after doctor and test after test kept showing I was as fit as a fiddle. No one could tell me what the hell was wrong with me! I was put on anti-depressants because, according to one doctor, I was depressed, nothing else. I existed in this ebb and flow of crash then push, constantly feeling awful and getting no answers or relief from the pain and exhaustion. I did find one doctor who diagnosed me with Chronic Fatigue Syndrome and Fibromyalgia and another that ran all the tests to confirm that looming and vague diagnosis of exclusion. But there was no real treatment and certainly no cure! Nothing more than some old outdated heavily-sedating medications. Nothing modern medicine had to offer, and I was quickly disintegrating.
There are times with Fibromyalgia that I exceed my walking limits. It is actually difficult sometimes because the limit changes. It can be a short distance one day and a decent distance the next.
There was a time when I had to run all over campus to get professors to sign my thesis to get it processed. I ran around everywhere looking for everything. Too much. I was in immense pain. I would sit down for a break but it was difficult to get up from that break. I could only walk with a slow shuffling pace because I had gone so far beyond my limit. I got honked at crossing the street, going as fast as I literally could. Made me feel horrible. I get I looked healthy. But I sure wasn’t feeling like it then. I ended up having to get back to my department because I couldn’t handle more. One prof on my team had to help me out, something I had never asked for before-help. Glad he did, though. There was no way I was getting anywhere at all.
This has happened before. Many times actually. Once my spouse and I went to go see the fireworks a few blocks from our house was one time it was a short duration flare. Maybe a 20-minute walk. I made it there. But it was a lot of standing to watch the show. So on the way back, my pain increased exponentially and my pace slowed to a crawl. I think it embarrassed my spouse since we were getting a lot of looks. What is wrong with her? She looks fine? It was an agonizing, and long, walk home for me.
Then there was the time I spontaneously developed a foot problem. It is possible it was plantar fasciitis or something else but caused by FM I have no doubt. It hurt to lift my foot to walk. To press it down with weight. The tendon itself in the bottom of my foot hurt. So I shuffled little shuffling steps for more than a year. I think it lasted 2 years before it went away. Flares up when I wear sandals. Or shoes I shouldn’t. Got a lot of comments on that as well. I couldn’t really walk fast because every step hurt.
Fact is, pain with FM can make us more visible. But when it does it just garners attention. This sort of What is That About? Attention. Because they see no injury. They can’t tell what is wrong. They just look at you funny. Or think you are moving slow on purpose to get in their way or slow traffic.
We, on the other hand, are stuck. Literally stuck wherever we happen to be. With the sole purpose in our minds of a) find a place to stop and rest b) get home as soon as humanly possible. We know we will make it there by inches if we must but it will be painful. And we will ignore the looks. And focus on every single step. Step by step, towards that goal.
Stare all you want. Our mind is on the finish line or at least a bench somewhere where we can rest the pain a bit. I am pretty single-minded when in that much pain. Just get to the car. Just get to the house. Just get to that bench. But I notice the looks. Hard to miss.
If it means significant restrictions to your daily activities, then, according to medical and government guidelines, yes, you have a disability. This may challenge the ability stereotypes you might have absorbed from the media, where disability is usually linked to the need to use a wheelchair because of a spinal cord injury or limb impairment.
This might get you wondering about what exactly the definition of disability is, how do we usually understand it and what does that means for how we value ability/disability. Mainstream medical models say the problem lies within individual bodies. Disability advocates say the problem lies in our inaccessible and ableist society. I wanted to post an excerpt from my instructor on disability studies to clarify these models and meanings:
The medical model of disability positions disability as an individual physical problem.
The charity model sees disability as an individual personal tragedy that should elicit our sympathy. Dossa (2005) refers to this as the “personal tragedy model” of disability. The “supercrip” model positions disability as an individual challenge over which someone can triumph by dint of hard work and elicits our admiration. In the moral model, the inherently negative stereotype of disabled people, which as Kumari Campbell (2008) points out links to self‐hatred, is something to be borne solely by disabled individuals. What all these models have in common is that they individualize disability, problematize disability, and locate disability in individual bodies that are defined as wrong (Wendell, 1996, p. 360). These all serve “other” disabled people.
Wendell believes that none of these models serve disabled people. She explores and explains the social model of disability as a more useful alternative. This model, which came out of the disability rights movement turns the focus away from disabled people and disability and onto the able‐bodied and ableism. Framing disability as a social justice issue means that the difficulties that face disabled people are located within disabling social structures and attitudes.
The social model arose through the disability movement’s critique of responses to the care needs of disabled individuals. By rejecting the medicalized or therapeutic model of disability in which power lies with professionals and disability is pathologized and individualized, the category ‘disabled’ was transformed into a collective political identity. Disability is understood as being constructed not through physical or mental impairment but through social, cultural, and environmental barriers such as inaccessible education, housing, public spaces, and employment environments; discriminatory health and social service systems; absent or inadequate benefits; and negative cultural representations. The social model requires us to engage with the marginalization and exclusion that disabled people are forced to face in disabling environments and challenge medical and social responses that enforce dependency.
What does it mean for our practice and for us as people, if we understand disability as individual rather than social? How is our practice impacted if we see most disabilities as resulting from individual failure to properly manage one’s life and avoid risks – including the relatively new requirement that parents/ mothers use genetic testing or amniocentesis to avoid having a disabled child? Alternatively, if we work from the social disability model and “value the differences of people with disabilities…what implications does that have” (Wendell, 1996, p.8) for our practice?
Most commonly, doctors are given the right and the authority to decide whether or not someone is disabled and to define the nature of the disability. What a doctor decides can and does determine access to benefits and entitlements. As Wendell points out, defining disability serves a larger political purpose. It reinforces the idea that disability is located in individual bodies (or brains); it makes disability into a problem of the disabled person, and it reinforces the power of doctors to pronounce on disability. But what then happens for people with unrecognized, undiagnosed, or undefined problems? Where does illness, especially chronic illness, fit into disability definitions?
I’m taking a disability studies class this term as part of my social work program. I study part-time, online. I thought I would post some of my reflections on reading articles for the class. People living with FM and CFS/ME don’t always think of themselves as ‘disabled’, but the way the world is organized and the way these conditions affect our bodies certainly mean we do live with a disability.
Reflections on Eli Clare’s (2001) Stolen bodies, reclaimed bodies:
I found that this poetic article illuminated the physicality of the experience of living with a disability in a way that I had never encountered before. Weaving the author’s personal experiences along with disability theory was incredibly effective in making the central point of the article. Clare argues that the disability rights movement identifies the social and material conditions that oppress disabled people as the locus of change, rather than the individual’s impairments of the body. However, in so doing, the body and somatic experience often gets lost in progressive disability discourse. Clare makes the point that our bodies are a key part of our identities, and mediate our engagement with the external world.
I have never thought about the social model of disability in these terms before. It makes sense to me, though, both intellectually and viscerally. I identify as a person living with a disability, and one component of my experience is chronic pain. Chronic pain, from my perspective, never fits neatly with the assertion by the social model of disability that the only location of problem and change in society. My relationship with my body, the pain that I feel every day, is also a site of struggle, and a challenge in my life, alongside the social oppression that I face as a disabled person. Disability, then, for me, is about both a relationship with myself and the external world. This article provided me with new ways to understand the internal and external realities of disability. Clare connects one with the other, as part of the disability rights movement; “without our bodies, without the lived bodily experience of identity and oppression, we will not truly be able to reconfigure the world”
You’re sitting in the doctor’s office, being told you have an incurable illness. Maybe you have to leave your career, or pull back on your workload, with set accommodations. You can’t live up to being the involved wife, parent, sister, or daughter you planned on being. Travel becomes difficult, athletic ability falls off, and favorite hobbies or pastimes become more challenging. But mostly you just don’t feel like you. A period of grief ensues over your previous life, and it crashes over you in waves.
Eventually, you start asking the big questions. Can you live a good life despite pain? How do you find meaning again amidst all the change?
I don’t have THE answer, but I did find some answers. I had to understand what I’d found meaningful in life Before Fibro (B.F.). And then I had to find the meaning behind the meaning- why is something sustaining, nourishing, enjoyable? Finding meaning is epitomized by the quote “A life well lived is a life fully experienced.”
I was a very career-focused B.F., finding satisfaction in the field of global health (HIV/AIDS prevention and treatment). Once all that stopped, I felt stuck and lost. The one thing I had been certain of, my “calling”, was gone. Making a difference through my career had given me a sense of purpose.
Travelling was my favorite activity. I came to realize that experiencing different cultures and ways of life was important to me because it had made my own worldview expand. Broadening my horizons made me feel vital and alive.
How to replicate that feeling from my couch at home? An answer came surprisingly from the podcasts and audiobooks I listened to during my enforced rests. I found I enjoyed learning about history, as a way to travel from my armchair. (I’m a ). Learning feels like time well spent, whether it’s listening to a historical mystery or an episode of a podcast on ancient Egypt. After all, curiosity keeps your brain healthy and young. What do you geek out about? It can be anything, from an academic subject to a hobby, to DIY project techniques. Intentionally find ways to learn about things you find interesting, from online classes, podcasts, audiobooks, or just connecting with interesting people online and asking them questions. The time that feels spent on rewarding things makes meaning.
Over time I came to see that there is a lot of life to live here, in ordinary life, without globetrotting or being career-driven. I never appreciated that B.F., assuming everyday life was boring and humdrum. But in learning to be mindful and still, I’ve found how much I missed before, and how much being present enriches my life. Being on autopilot, or always looking ahead, meant I whizzed past sunsets, birdsong, long hugs, savored meals, belly laughs and so many other moments. Connecting to the beauty and wonder all around us via our senses is possible, even while in pain, even at home. Finding ways to feel that makes life more worthwhile. Mindfulness as a practice, or just realizing the need to be present, means showing up for moments big, and small. Choose to stay with an experience instead of reaching for a distraction.
And the difficult experiences of chronic pain, surviving the limitations, still mean that you are living fully. I’ve grown in strength, resilience, compassion, self-confidence, and patience in ways I never would have before my illness. After all, what else really is the point of life other than to become a better, wiser version of ourselves on this journey? This is another way to have a purpose in life. I’ve come to value growing as a person as one of my most important accomplishments, instead of getting promotions, keeping up with the Joneses, or any of the other markers we are taught to measure our success by. Without fibro, I would have let external factors determine my self-worth. It’s not that I’m grateful for fibromyalgia, or that I’m glad I have it, but I have found a way to make meaning out of it, and find a silver lining. I’m developing as I go; it’s a work in progress, but a worthwhile one.
I’ve written before about the critical importance to our happiness of self-expression and contributing to something greater than ourselves. We are often taught that the only way to do this is to work and be a “productive citizen.” However, there are so many other ways to find connections, such as sharing your story and finding online relationships, to learn from and support others. Writing on my blog and now writing as a freelancer, has transformed my life. Volunteering, supporting others online, teaching, mentoring, and sharing your experience are all ways to contribute, big and small.
Fiction writing has engaged me again in a new way through imagination. (I’m writing a historical mystery set in Niagara Falls during the American civil war when the area was a hotbed of spies and intrigue). Creativity can be a form of salvation, as a craft, art, music, interior decoration, in the kitchen, the garden, on the page, or anywhere else. We shift into an active mode, not passenger mode when creating. Yet we also refrain from intellectualizing, analyzing, number crunching, or any other left-brain thinking. Creativity is about engaging intuitively, emotionally, and symbolically with the world, through self-expression, using the right brain. It’s good for your heart; it’s good for your soul. Don’t disparage it as “unproductive” or unimportant, because it is a meaningful source of intrinsic pleasure. It’s meaningful because it’s a way of being open and engaging with the world around you (sensing a theme yet?), via your senses and interpretations, from your own unique perspective.
We find meaning in our relationships, in our faith, and in our philosophies. But we have to be present, open, and engaged to really benefit from these resources. That doesn’t happen overnight! But tuning in to our senses, our inner strengths, our creativity, our intrinsic interests and sources of pleasure allows us to connect to the world in ways that create and cultivate meaning in our lives. This is a form of strengths-based healing – leveraging your inner resources to create a life fully experienced, and well lived – in spite of adversity.
The world lost a woman yesterday. A boy lost his grandmother, three people lost their mother and a man lost his wife. This woman was a pistol, tough and strong and a force to be reckoned with. I grew up with her tales of adventure, living overseas while young and newly married, her husband in the military. I learned of a day in 1929 when this girl took a shoebox of money she was saving to the bank, to be turned away empty-handed, for her money was worth nothing.
I recall dramatic and gory stories when she worked as a nurse, the night shift in the E.R. I ate many holiday dinners at her dining room table and swam many summers in her swimming pool. I never shared blood with this woman, yet she is the person who gave me one of my mothers. And she too suffered from a silent illness, Lupus. An illness of shared compassion to us Fibromyalgia patients. But she braced herself up and raised her family, one of her daughters developmentally disabled and by her side every single day. She was a woman of courage and strength and integrity, a beauty from a bygone time. Blessed with long life, part of her will go on. In the friends, she loved, each child she created. Birthed and raised and taught right from wrong. Each life she touched, I.V. she poked or Special Olympics she attended to watch her daughter win gold and silver medals. That is what goes on. The memories her loved ones share when brought together as they laugh through their tears, recalling something they did that made her really really mad. The animation and times of a person with a life well-lived. Respected and remembered. Rest in peace, you will be missed.
There is a book whose title I will not tell, written by an author that will remain unnamed, that everyone in the whole wide world made such a giganticfuss about. Hollywood even made it into a movie! And all I heard from everyone I knew was to read this book. It is great! Empowered womanhood! You will love it! They all assured me. So I broke down and bought the darn thing in paperback at Target. Immediately I was turned off, for this woman had been portrayed as a hero, a goddess of unprecedented proportions for overcoming unspeakable pain and triumphing over all her wrongdoers with a transcendent peacefulness.
But all I could see was a woman with an endless bank account and oodles of time on her hands void of any responsibility cavorting around and indulging herself. And I got mad. Actually, I was really really jealous. Because I wanted her life. And I wanted her problems. And most of all I wanted her solution, irresponsible and generously funded self-indulgence! I put the book down after my 6th or so attempt to get into it, fuming and angry as I had been the 5 times I had previously ventured into her world. Did anybody even edit this book? It reads like she turned a tape recorder on and recorded her stream of consciousness, whatever came to mind and published it hot off the transcriber’s desk. Finally, I decided this is not the right time in my life to be reading this book and it went back on the shelf for another place, another journey, a whole other attitude adjustment.
Then irony smacked me upside the head a few times to catch my attention. My complete lack of compassion became glaringly obvious. I judged this woman because her trauma was not worthy of my respect. It was not big enough, grand enough, destructive enough. But it was still her trauma. She had every right to feel what she felt, for if that was as bad as her life had gotten she was a very lucky girl and must not have much to compare it to. She had every right to make millions of dollars off this venture if she is writing what her customers want. Just because this woman had not befallen to a multitude of health problems or natural disasters or an abusive past or anything equally traumatic I judged her. Yet I would not ever in a million years with what I have been through on even my worst enemy. This found me in a particular set of reasoning that made no rational sense. My heart softened and I found empathy and even a little joy in being reminded not everyone suffers so horribly in this thing called life. So go for it girl! Live your life and keep loving and laughing and doing what makes you happy, I begrudge you nothing. I hope she never has to find out about the devastation that comes when life really betrays you and leaves you stripped naked and beaten lying on the floor wanting to die. I can only pray.
The premise of the Gupta program is that fibromyalgia (FM) and chronic fatigue syndrome (CFS/ME) are caused by abnormalities in the functioning of brain structures that process physical and emotional threats to the body. However, connections in the brain are not fixed and can be rewired. Neuroscientists call this process “neuroplasticity”. The program was created by Ashok Gupta, who suffered from ME/CFS himself, but has since recovered.
The primary region in the brain involved is called the amygdala, a small almond-shaped structure in the brain. The amygdala interprets sensory information in order to detect potential threats to the body. If the amygdala determines that there is a threat, it triggers a response from other brain regions in order to protect the body.
However, in certain people, the amygdala may overprotect the body. Many patients with CFS/FM experience a viral infection and/or a period of heightened stress at the beginning of their illness. These circumstances put the amygdala on ‘high alert. The amygdala begins to interpret sensations in the body as dangerous (like back pain or fatigue after a virus), triggering negative thoughts in the conscious mind about these symptoms, and causing a constant, unremitting stress response in the body. This stress response causes further negative symptoms (sleep disturbance, pain, digestive issues, etc.) – setting the stage for a vicious cycle in the body, which we call fibromyalgia.
I can completely relate to this hypothesis. In the year before I developed FM, I had mumps, bronchitis, gastroenteritis, as well as back pain. Then I began an intensive graduate studies program, which caused a lot of anxiety. I quickly developed a cascade of FM symptoms, including body-wide pain, fatigue, and insomnia.
At the core of the Guptaprogram is an amygdala retraining technique. This technique involves a series of steps that focus on changing your relationship to your symptoms. Retraining includes recognizing and interrupting the flow of negative thoughts about your symptoms; changing your self-talk in a compassionate and positive direction; and visualizing health and happiness in your body.
In addition to the amygdala retraining technique, the program includes a daily meditation component, as part of the larger brain retraining focus. Meditation is, essentially, a way to practice being present. According to Jon Kabat-Zinn, a pioneer in the field of meditation and medicine, meditation is a practice of learning to “pay attention, on purpose, in the present moment, non-judgmentally.” Researchers have investigated the effect of meditation programs for patients with chronic pain conditions and found overall improvements in bodily pain, quality of life, and psychological symptoms (Rosenzweig et al., 2010). I have personally benefited from regular meditation practice by learning that most anxiety comes from worrying about the future or reliving difficult moments from the past, rather than from anything going on directly in this moment. Learning to be more present has helped me reduce stress and anxiety by reinforcing what my grandma used to say –– worry aboutcrossing that bridge when you get there!
The goal of brain retraining is to substantially improve FM/CFS symptoms and even recover from these devastating conditions. Is it really possible? A small clinical audit found substantial improvements in 90% of patients with CFS who attended Ashok Gupta’s clinic in London. The Gupta program website is full of success stories and positive testimonials. The program is designed for patients no matter how long they have suffered from the condition.
The Gupta program consists of a DVD program and Webinar series which includes:
a fully interactive DVD programme of 14 Training Modules with clinical director Ashok Gupta;
a comprehensive manual (which is a transcript of the DVDs), as well as worksheets and handouts
2 Audio CDs with Meditative and Breathing Techniques
a large floor chart mind map to help you “retrain your amygdala”
a Follow-up 3 Month Group Coaching Webinar Series: 12 Interactive Sessions with Ashok Gupta in the form of a weekly webinar on a weekday evening, 6pm UK time, with the opportunity to ask questions and see feedback from others
The Gupta program also incorporates a free app called ‘The Meaning of Life Experiment‘ with 30 days of free meditations. This is an excellent meditation app. Ashok Gupta guides 10 or 20-minute meditations on topics like dealing with difficult emotions, gratitude, and inner peace. This app has helped me to deepen my meditation practice and I can’t recommend it highly enough.
Before I share my personal experience with the Gupta program, I should mention an important caveat. During the five months since I began the program, I have undergone surgery and experienced complications from an unrelated chronic pain condition (endometriosis). For this reason, I do not expect to see improvements in my physical fibromyalgia symptoms at this time. (As an example, my unrelated chronic pain condition often keeps me awake at night, so it’s not surprising that I experience fatigue and brain fog after a bad night’s sleep). However, I have been surprised that my fibromyalgia symptoms have not flared or worsened despite the pain and disruption of my endometriosis.
Instead, the benefits that I have experienced are primarily in mentally and emotionally coping with chronic pain and illness. The daily meditation component has helped me to be more self-aware. What I really like about the Meaning of Life Experiment app and the meditation and breathing technique CD is that the guided meditations go beyond practicing being present. The ‘soften and flow’ and ‘surrender’ meditations have provided me with invaluable techniques for handling difficult emotions, like anxiety, that can accompany life with chronic illness. On the flip side, meditations on gratitude and cultivating inner contentment have helped me to take in the positives of small moments of enjoyment throughout my day. Finally, meditations on self-compassion have helped me to better understand patterns of negative self-talk or self-judgment. In the same vein, the amygdala retraining technique has helped me to interrupt unhelpful thought patterns like hyper-vigilance over symptoms or catastrophizing negative experiences, like having to cancel plans at the last minute. Since these negative thoughts are associated with an amygdala on high alert, I’m hopeful that breaking these cycles will help improve my physical fibromyalgia symptoms over time. Overall, I can say that I feel more positive and in control since I began the Gupta program.
The Gupta program costs $299 in the US/CANADA. One aspect I like is that if you aren’t satisfied with the DVD Home Study Course, you can return it for a full refund after 6 months, and for up to a year from purchase (minus the cost of postage and packing).
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.
“Courage is resistance to fear, mastery of fear, not absence of fear”, Mark Twain
I have watched all episodes of the documentary Afflictedon Netflix. My mind is reeling and disturbed. I am hoping that by writing this blog I can begin to piece together my thoughts which to this point are rambling and disjointed. I have heard from one reader who has said there is a group who is writing to ask Netflix to remove it. At this point, I am neither for nor against this strategy.
For those of you who have not seen the documentary, there are seven people portrayed with four alleged conditions: Multiple Chemical Sensitivities(MCS), in one case, predominately mold, Chronic Fatigue Syndrome (CFS, otherwise known as myalgic encephalomyelitis, ME), electrical sensitivity and Chronic Lyme Disease. The term fibromyalgia has not been mentioned but the symptoms and life experiences are somewhat the same for many people.
What is prompting me to write this blog and acknowledge the distress I feel watching these seven people? What have I to say that is fair-minded, will not cause more angst for the women and men in the documentary, and will ease my own mind as I am invited into lives that are clearly filled with emotional and physical pain?
There are those who will be angry at the physician (MD), Dr. Friedman, who suggests the difficulty with these unexplained syndromes is that they are psychosomaticin nature. The filming crew does not spend much time with him allowing his view to be aired more frequently, but paraphrasing him somewhat, he suggests the persons experiencing this trauma and taking on the sick role have become more entrenched in their symptoms without identifying that it is a psychological issue. I can’t quote him verbatim and to rerun this program is not something I am keen to do, especially since his voice is somewhat low and I could not catch most of his views. But, I believe I just reported the gist of what he meant.
I do find it very upsetting, but understandable, the myriad of treatments, including supplements that are taken by all of the seven persons. One woman is quoted as taking 55 supplements daily. The travel and treatment costs are extremely high. None of them are evidence-based, while most appear outlandish. There is a considerable strain on caregivers and the desperation and constant searching for specialists (the majority of whom are from the ‘alternative medicine’ realm) is distressing.
The self-imposed emotional and physical isolation is difficult to watch, although with one notable exception the people do go outside and seem to be mobile. I was astounded that these people were not encouraged to exercise, at least moderately, although one woman at the end was doing yoga which was very encouraging. Since most were able to walk and did not seem to be experiencing pain with walking I was filled with envy at their abilities.
Before the reader is convinced that I am not sympathetic to the endless searches of the sufferers for a cure to these invisible ‘diseases’, let me assure all that I have been there, wishing I could find a cure for fibromyalgia (FM) and chronic fatigue (CFS). Furthermore, I do not want to sound morally superior because I no longer advocate nor use any treatments that are not integral to scientific, evidence-based medicine.
I too have indulged in multiple alternative treatment modalities that were very expensive, and while at first would feel some relief from the pain and chronic fatigue, it was all due to the placebo effect and did not last. Ah, the power of the mind! All these therapists would tell me the same story, that is, that my liver was ‘stuck’ and I had to detoxify, that is, to do liver flushes.
In my view, this is a scientifically inaccurate claim. The language is similar to most of the alternative practitioners. They are paid handsomely for strategies that are part of what I believe to be voodoo science. Some in this documentary entice them to be hopeful that their treatments will work but at least in one instance the therapist suggests the woman will die if she does not comply.
Most of the people in the film seemed to drink much water from plastic bottles, and plastic is a well-documented allergen. Water, particularly in plastic, especially if left in the heat, like the desert, cannot help but aggravate the immune system. Pets that are notorious for causing allergies were still a part of some of their lives. Therein lie many of the contraindications of our lives, sadly, mine included, if truth to be known.
People deal with their own trauma in their own ways and it is understandable that for many it is to focus on a cause that can be cured. I too have been there and it has taken me a long time to realize that the cure rests within me. Not so much an actual cure, but an understanding of the trauma of my earlier life that has affected my central nervous system to such an extent that I want to take the responsibility away from myself.
I wish so often and so fervently that a new place, a new therapist, and a new treatment could alleviate my pain, fatigue, and myriad other symptoms. Alas, it is up to me to get up from the urge to lie in bed, give up, and let others take total care of me. I make this statement on a day when I feel like I can barely move. I know the answers: meditate, do light stretches, indulge in a new activity, and most importantly, get up and walkabout. Vegetating, moving to a new town, country, or space, adopting a self-imposed diet of fewer and fewer food types, and always searching for the magic treatment is not the answer. What lies within me and yet I too struggle.
I understand the seven persons in the documentary. My advice is to not give up or give in to the false hope of being permanently ‘fixed’ by someone else. An experienced therapist who understands extreme anxiety and panic disorders can work with us to help us understand how we got to this stage, how to deal with triggers, and how to live a better quality of life in spite of the state of our amygdala.
We need to understand the neurobiology of fear. Note what Dr. Christine Blasey Ford spoke of regarding the hippocampus, which is closely connected with the amygdala and how we process fear. She too experiences anxiety and panic, yet she mastered all this by standing firm against adversity. She is my heroine. I will get up from the sofa and face the day and all its challenges.
