A Fibromyalgia Community-Driven Blog

Blog entries are published in English or French, as submitted by the writer.
Anyone who has been diagnosed with Fibromyalgia learns that it is a life-altering disease.  We must embrace and accept a new norm, to move forward, find new purpose and meaning, and get creative and resourceful with new ways of thinking and doing things for ourselves.
This community-driven blog, provides a safe, interactive space for Canadians with Fibromyalgia, living in our homeland or in another country, with opportunities to educate, inform, inspire, or entertain readers.  Fibromyalgia Association Canada [FAC] invites Canadians with Fibromyalgia to submit personal stories, tips and coping strategies, opinions, or even humour on life with Fibromyalgia.  It is your opportunity to teach people or learn from readers.
This blog features authentic lived experiences of persons living with Fibromyalgia.  It may contain potentially triggering content as these can be  challenging stories.   The reason for this is to show authentic and honest representation.
Photo by A. Sewell.  Sun shining through an old, wise tree

Moving Through The Pain

Embracing a Healthier Mindset About Physical Activity 


Many fibromyalgia patients are apprehensive to exercise, for fear that it will make their symptoms worse, potentially even contributing to a flare in pain. While these concerns are valid, several studies suggest that incorporating mild-to-moderate exercise into our daily routines can help alleviate pain. The key is to start slow, listen to your body and don’t overdo it. If you have concerns about starting a fitness regime, your doctor can help you to determine how to safely perform these activities. Physicians tend to unanimously agree that an active lifestyle is excellent preventative medicine.
Yet when you struggle with chronic pain, some days it’s difficult to imagine being able to do anything beyond getting out of bed. Perhaps there are times when even that isn’t available to you. Set a plan for when you are feeling stronger, and try, try again! The first few times you test out a new skill or activity can be intimidating. 

<-- Sun shining through an old, wise tree 

If you’re like me, perhaps you have an unhealthy belief that you should be good at something the very first time you try it. This belief holds us back and prevents us from finding joy in exploring new skills.For the record, I’ve never been a naturally-gifted athlete and was consistently picked last for every sports-related activity in school (the Lisa Simpson of the group, if you will).  Once again, these early experiences can plant a negative message that not excelling at a particular activity means we shouldn’t engage in it. While that belief is certainly difficult to challenge when your peers are excluding you, there is a certain satisfaction in engaging in these activities regardless of the attitudes and opinions of others.
One of the strategies that I’ve included in my fitness plan, is to find activities that I enjoy doing, and incorporate them into my daily routine. I enjoy walking, doing yoga and Qi Gong (energy work, an ancient Chinese Healing practice). I’m particularly passionate about hiking. There’s something to be said about incorporating time in nature with exercise. Taking in the beauty around you not only makes you feel calmer, it can help to distract you from the fact that you’re sweating and feeling the burn.

Photo by Ali K. Sewell  Astonishing view from Centennial Ridges Trail, Algonquin Provincial Park 

Photo by Ali K. Sewell  Astonishing view from Centennial Ridges Trail, Algonquin Provincial Park
During the pandemic and subsequent lockdowns, I used hiking as a means of maintaining my sanity. We are fortunate to have so many lovely provincial parks to choose from. Being stuck inside for long periods of time has deleterious effects on both our physical and mental health. If you think about it, humans aren’t that different from plants, in that we require fresh air, sunlight, water and nutrients in order to thrive. The main difference is that we don’t have roots, and so we’re designed to move to get energy flowing!
I recently got back from visiting Algonquin Provincial Park, which offers some of the most beautiful hiking in Ontario. On route to the trail, I even spotted a moose from our vehicle – a first of hopefully more sightings to come. I remember starting off strong and feeling confident on the trail. The weather was cooperating, the rain and bugs holding off. As we were climbing the approx. 240m elevation (that felt more like 5000m) to the look-off point, I began feeling rather exhausted and even questioned my sanity.
Those are the times when I wonder if I am going to be able to complete the trail, and consider the possibility that I’m destined to live out the rest of my days in the park. That’s when it’s imperative to stop and take a nice, long rest. Take a load off, rehydrate and refuel. Don’t rush to see if you can finish the hike before that annoying, arguing couple behind you (or maybe use that as motivation to help you along your merry way).
Photo by Ali K. Sewell  Sun shining on stone statues along The Bruce Trail
There was a point in time when I dreamed of hiking the Bruce Trail from end-to-end. That was before I researched it and discovered that it is a difficult thru-trail, meaning there are many gaps in terms of where you are legally allowed to camp overnight. It was also before becoming realistic about where I’m at along my healing/fitness/balancing act chronic pain journey. I have been using a cane intermittently since the age of 29. And while this alone isn’t enough to stop me from living life on my terms, my brazen backpacking days are becoming scarcer. It’s all about creatively (and comfortably) finding ways to work around these challenges. So, while I’ve hiked large portions of the Bruce Trail, I’ve come to realize that I will need to put in a lot of training and require special accommodations in order to take on such a monstrous trek. 
I’ve received all manner of critiques, ranging from negative comments to words of encouragement along my hiking journey. There are unfortunately some individuals that think because you live with chronic pain/a disability that it implies you are incapable of doing anything, including the activities that bring comfort and joy. Fortunately, I have some friends that appreciate how challenging the trail can be, even for able-bodied individuals. They have told me I have inspired them to move forward on their respective paths. It’s important that we continue to set small, attainable goals that allow us to move forward and allow for personal growth. 
At the end of the day, this is my journey. What works for me may not be accessible to others.  My love of hiking grounds me and provides me with fresh air, natural beauty and tranquility. The added benefit of a good night’s sleep is greatly appreciated too!

Photo by Ali K. Sewell  Sun shining on stone statues along The Bruce Trail -->

Here are some tips for maintaining physical activity with chronic pain:
1. Start slow, listen to your body and don’t overdo it. While any amount of activity will likely feel challenging in the beginning, it’s vital to not do anything so strenuous as to cause injury. For most of us, mild-to-moderate activity is an attainable goal, with the appropriate modifications in place. An example of this could be doing yoga while seated in a chair, and modifying poses to be less strenuous.
2. Perform a self-assessment before you start – Before embarking on a hike or performing any kind of physical activity, I stop and ask myself if I’m really feeling up to it. If the answer is ‘no’, or that I’m doing it so as not to disappoint someone else, then I know I should reschedule for a time when I feel up to the task. Your body will thank you for listening to it.
3. Stay hydrated - Ensure that you have enough water with you. If you’re performing activities outdoors in the sun, you will need to bring even more water to account for excess fluid loss.
4. Bring snacks and rest often – This is a life motto of mine. It’s best to have something on hand in case of low blood sugar. No one likes a hangry hiker!
5. Dress appropriately – Dress according to the seasons. In the summer, consider a hat and sunglasses to protect from UV rays and perhaps some moisture wicking clothing. For cooler weather, layering is best for staying warm. High quality footwear makes all the difference in the world. Once I stopped caring about being fashionable and focusing more on comfort, I noticed a reduction in pain, particularly when it came to footwear.
6. Never go alone – If at all possible, always bring someone with you. This gives me peace of mind that if I encounter any kind of difficulty, I have someone that can help. If this isn’t possible, tell someone where you’re going, and bring a cell phone (check to see if there is cell phone coverage in the area before you go). It’s also great to have a buddy encouraging you to keep going! (A dog might be a really great option here.)
7. Pace and plan accordingly – If I have a busy day of appointments or tasks to complete, I won’t engage in strenuous activity the day before. This is a lesson I learned the hard way. Generally, the fatigue I experience comes later, sometimes in the evening or the day after a big hike. Being aware of this allows me to schedule accordingly.
8. Pack your go-to supplies – For some of us, maybe medication for breakthrough pain. For me, it’s something along the lines of hydrating eye drops and something to keep my hair out of the way. Never underestimate the small things that suddenly aren’t at your disposal in the great outdoors. These comforts can make a huge difference in your overall experience.
9. Leave the trail cleaner than how you found it – There was a time when I would pick up garbage and dispose of it where it belongs, in the trash and not on the ground! Due to the pandemic, I cringe at the thought of picking up someone else’s Tim Hortons cup. At the very least, please don’t litter. This includes items like gum, toilet paper and fruit peels, which can take a long time to biodegrade and don’t belong in that environment.
10. Get outside and enjoy! Even a five-minute walk in the sunshine can lift your spirits and get your blood flowing. 
Photo by S. Sewell  Ali sitting by a stream, content after a hike through Claireville Conservation Area
Some Trails to Consider for All Abilities:
Carstairs Trail, Northumberland County, Ontario - trail loop offers 4km of accessible pedestrian hiking. What a wonderful idea! There are many shady benches to sit and rest, and the ground is flat enough that those using assistive devices can navigate more easily.
Parks Canada List of Accessible Trails -
YouTube Reference Videos – Tai Chi/Qi Gong and Gentle Chair Yoga:
Gentle Tai Chi and Qi Gong LEAP Service, Cara Kircher -
Gentle Chair Yoga – 10 min LEAP Service, Cara Kircher -
Further Inspiration, an Adventure Story:
I highly recommend reading Cheryl Strayed’s book, Wild  It’s also a major motion picture featuring actress Reese Witherspoon. 
ABOUT THE AUTHOR: Ali was diagnosed with fibromyalgia in 2017 but has experienced symptoms since childhood. She's passionate about managing fibromyalgia naturally and is currently pursuing studies in herbal medicine. When she's not studying or enjoying the great outdoors, she volunteers with Fibromyalgia Association Canada (FAC), spends time with beloved animal companions, and is often cooking up something healthy and delicious. 
inspirational thoughts & words

Quotes to ponder on through your week... 


Quotes to ponder on through your week...

Moderation and Pacing


Coping with fibromyalgia can be overwhelming and futile at times.  Then, there are the moments where you can feel more capable and start something that was more than you can handle. We have all been there many times, and it seems to cycle around. That’s okay, don’t be!  I can confidently say that moderating and pacing are two of the absolute hardest things to learn to do.
To learn how to pace yourself you must recognize when you reach your functional limit. Once you work beyond that limit then you have overdone it physically. The functional limit is a     point in your activity, much like finding the catch part on a clutch on a manual car, where you can hold the car between gears and shift. I have great difficulty in recognizing that point where I have overdone it. I usually push myself in a tasking, chore, or social outing where I have been overcome with pain, stiffness, nausea, headache etc.… Overdoing it is so easy to do as it can silently sneak up on you but then you can hit a wall with your physical abilities and pain tolerance. Crossing that line in the sand isn’t as dramatic as it sounds or recognizable either. That imaginary line changes often, it is a variable that has no regulation. Some days, I am more capable than others and there are the days where I lack the ability to do many things, walking, lifting my arms, and even showering can be challenging.
Those who are not contending with an illness have difficulty understanding why one cannot self-regulate their behaviour to avoid overdoing it. They cannot fathom why we can’t recognize that imaginary line in the sand. Is it because we want to do more and push to accomplish things, that others who are not ill can do, so we feel less guilt? Is it because we cope with chronic pain and it blurs our comprehension? Or are we simply unable to adjust to our new limitations and abilities or disabilities?  I believe many of these issues come into the equation when we discuss pacing and activity modification. Don’t worry, I have some suggestions about how to moderate our activities.
Moderating and or pacing is a way people manage their own activities in an effort to avoid or limit flares and illness crashes. Essentially, pacing yourself in order to function evenly.
One of the big issues that I grapple with is not wanting to draw attention or embarrass my family or myself. For example, I know I have limited ability in regard to walking/standing long distance, so going through an amusement park is very difficult for me. Yes, I can do the walking, but I suffer doing it.  It will cause me to have to rest for days after and reduce any activity. Further, it may likely cause a flare and days of increased pain.  I have learned that using a wheelchair or a walker would help me enjoy myself more as I am not in as much pain and can save my energy for other activities. I did not realize that this was an option until recently.  We must be aware that these accommodations will help reduce our pain and increase our ability and quality of life. For me personally, I must stop worrying about what others may think or feel about my choice to use mobility aids. It is extremely hard for me in terms of revealing my invisible illness and then feeling like you are compelled to explain yourself.  I worry I open myself up to criticism, but sensitivity has always been my thing.  It’s a bittersweet skill being sensitive helps me deal with people but being sensitive makes me overly concerned about negativity.
Those with fibromyalgia do not usually have the medical staff helping us with our needs in terms of adapting ourselves to our new lives. Occupational therapists if we get to see one, don’t really see assess us on our bad days and our struggles when we find ourselves in bedrest which is the only activity that we can manage. We seem fine in appearance, because we are so good at masking the pain and disability. It is up to us, to voice our needs and or modify our everyday lives, so we can cope with this illness more aptly.  We can’t rely on the medical staff to assist us as they too are overwhelmed even before the pandemic, so now we must be our own advocate.
I did not understand that choosing to use a wheelchair would help me reduce my pain level and allow me to do more. I would avoid a shopping trip to the mall with a girlfriend as I would not be able to function. After learning that using a mobility device is understandable and would assist me for these activities, it seems like a simple solution. You had me at pain reduction! I really must learn that my perception of what others think of my choices regarding my illness is really my lack of coming to terms with my illnesses and accepting that I am not the physically able person I use to be. Also, you must not care about other people’s reactions. They are not in your body coping with your pain, and all the entailments of chronic illness.
In discussing pacing, oneself there are many ways to illustrate the energy saving processes for fibromyalgia such as the “Spoon theory” which involves you having an imaginary set number of spoons to use through out your day, every activity you do costs a certain number of spoons, and once you have used your spoons, your energy and abilities are maxed out. People with no illnesses have more spoons at their disposal. However, I prefer to equate it to a battery just like your cell phone, the more you use your phone, the quicker the battery dies. So, you can think about how much energy your morning routine would take getting up, taking your medication, getting showered, dressed, making your bed, and having breakfast. These activities will quickly drain my battery and then I must rest for an hour or so and then move to say doing other tasks and then rest again. I repeat this cycle throughout the day and try to keep “not overdo” at the front of my mind. Often, by the time I prepare and make dinner, I am overdone and tapping out for the day. I don’t have the energy to clean up and can only do activities from my chair.
Another aspect to consider is that you break down tasks into small doable chunks. I used to be able to clean my house in one day. Now, I break that down into every day, I tidy up the house, do a load of laundry, and some other light work. I have someone do detailed cleaning for me, which I cannot do such as scrub the shower, tub, and floors. I will take a job and think what I want to accomplish and then make a goal of doing half of that, to make it more attainable. By breaking the chores down into small bite size pieces, makes your goals more obtainable and doable. This helps you pace yourself by setting small goals. This in turn will help lessen the chances of your overdoing it.
I also plan out on days where I have medical appointments that I have no other requirements of me on that day.  I know that dressing, driving to the office, parking, and walking into the medical building often is hard on me. Therefore, I know that I can go home and rest afterwards.
I also know I must keep moving, and if I was asked to give advice to others, I would say the same. Keep moving. It helps me stretch and unseize.  Sometimes, I just put music on while doing dishes or tidying up, to help keep the momentum going.  I always find motivation, with help from good Motown music or whatever strikes me that day.
When I do rest, I tend to tasks that I can do while sitting, and am always variating between sitting, resting, and moving throughout the day.  If, however, I am in a lot of pain, or having a bad flare, I may just need my bed and so, I will give in and listen to my body. Only you can decide when to push through or go to your bed.  We know our bodies and our illness/es, so listen to your body when needed.
Break everything down into small tasks until the job is done. Don’t beat yourself up if you can ‘t function to complete something in that moment.  It  will pass over and you will eventually get it done. I can be horrible one minute, and then the next hour or so, I can recover somewhat.
 If you have a massive physical job, call in friends, family, and helpers. Students can do lawncare and yard maintenance. Have a friend who likes to help occasionally for organizing or cupboard clean outs, just make them dinner. Always return a favour. When, I moved into my new home, I got very ill and was unable to unpack. Several friends supported me and helped me unpack over a few weeks, which helped me so much. 
 When we discuss pacing or moderating our activities, we also must remember to keep our self-care in mind, by being vigilant with our routines for medication, hydration, and nutrition.  These small priorities that we build in our daily life help us to perform and function well and avoid flares.  It is not okay to avoid basic care to get chores down. Keep building a good foundation for yourself by learning about eating healthy, better foods and reducing sugars. Make small changes slowly and keep working towards cleaning up your diet.  I say this because I had noticed I was getting horrible headaches but also it didn’t occur to me that I wasn’t eating much in the early part of the day due to acute nausea. I learned that I needed to eat during the day and eat cleaner smaller meals.  I only plan one outing a day and spread out my days during the week where I must drive, do appointments or errands to not be overcome with pain.

Some Do’s & Don’ts

  1. With your priorities in mind, keep lists of jobs and chores you need to do.
  2. Prioritize your lists of to do’s.
  3. Tackle one job at a time and break it down into twenty or thirty minute work periods, or fifteen minutes depending on your abilities. It will get done but not overnight.
  4. Learn how to truly rest your body and what works for you in terms of recovery.
  5. Make your selfcare your priority as it is the best thing you can do for your body.
  6. If you can access an occupational therapist and undertake training for moderation that is specific to your situation.
  7. It is okay to not finish a task all at once. Hard to learn.
  8. Throughout your daily day take time to listen to your body and check in on it to assess where you are at.
  9. Don’t be so hard on yourself!!!
  10. Utilize a pain tracker/journal, makes your more aware of your habits. This can help you with you and your healthcare team to determine patterns and behaviours that may be contributing to your pain.
These are just a few suggestions to help yourself be more aware of your abilities and limits. We must always be monitoring and pacing ourselves to better conserve our functionality and cope with our chronic pain.

Quotes to ponder on through your week...

Exploring What Works

Ali Kat Sewell , Toronto, Ontario; Posted July 22, 2021

The views and opinions expressed by the author are not intended to diagnose or treat health conditions. The content is not intended to replace consultation with a medical professional. Please consult your physician for personal medical advice.

I was officially diagnosed with fibromyalgia in October 2017. I was 29 years old and experiencing housing instability. While I felt an immense sense of relief to finally be able to put a name to all of the pain and multitude of symptoms that had plagued me since birth, I felt terrified about an uncertain future. In the months leading up to my diagnosis, I’d once again returned to Toronto, following a brief stint in Halifax. One might describe my former years as somewhat transient. Fibromyalgia slowed me down to a point of needing to invite stillness into my life, which in some ways has been advantageous, but sometimes translates to feeling “stuck”.

I grew up in rural Nova Scotia, where to this day, there remains a severe shortage of medical professionals. This led to not receiving adequate health care services, being dismissed, and told that my problems were “all in my head”. Born with severe asthma, every breath felt like chore. I soon developed food sensitivities, autoimmune diseases, and endometriosis, that required multiple surgeries. As a result of living in three Canadian provinces, and being passed along from one doctor to the next, many of my medical records were not adequately maintained. With the wealth of knowledge that I’ve acquired about my various chronic conditions, everything I experienced was a clue connecting the dots to this complex puzzle known as fibromyalgia.

There was a small part of me that was hopeful I’d have access to some of the best care, given that Toronto is the largest city in Canada. Surely some of their world-renowned doctors would know how to help. I discovered early on that there are major gaps in the treatment of fibromyalgia. Like many persons with the condition, I went through the process of trial and error in determining what pharmaceuticals might manage the condition. I received painful injections designed to help numb the pain. I tried mindfulness-based practices (yoga, meditation, qigong), and alternative health modalities (massage therapy, acupuncture/TCM, energy healing, herbs and supplements). Reflecting on this long list of treatments that I explored since diagnosis, I suppose that my life hasn’t been as dull as I thought!

How do we even begin to get to the bottom of what works? There is no one solution that works for everyone all of the time. Based on my experiences, it’s vital to keep an open mind, be willing to ask a lot of questions to determine the pros and cons of each treatment option, and track your symptoms. Above all, compile a team of supports – this can include health care professionals, clergy, companion animals, supportive friends, laughter medicine, prayer, and one of my personal favourites, spending time in nature. Whatever it is that sets your soul on fire, embrace it and invite it into your life as much as possible. Chronic pain has a way of extinguishing hope; we must nurture the spark that ignites it.  

Living with fibromyalgia has taught me that there are days when I don’t feel strong enough to endure the pain for even one more minute.  Those days can feel incredibly isolating, like a dark cloud following my every move. I am very fortunate to have found support from Fibromyalgia London Group, which then led me to Fibromyalgia Association Canada (FAC). Through these organizations, I’m reminded that by opening up and sharing my experiences with others, I can hopefully have an impact on someone else experiencing similar issues.

Loneliness and isolation are common themes among individuals living with disabilities, chronic pain/illness. The COVID-19 pandemic further complicated this issue, by removing many of the supports which individuals in marginalized communities relied on for their very survival. For some, it has been a time of great reflection, a time to reassess our lives and examine what is and what isn’t working. When I examined what that meant in my life, it involved connecting with other individuals (via Zoom and social media), to unite persons with fibromyalgia across Canada. It’s never too late to start something great and the first step starts from within.

Sometimes it's the Small Things...

maggie o'brien, windsor, ontario; posted july 22, 2021
Following my fibromyalgia diagnosis and becoming unable to work shortly after, I felt lost, with a lack of support. After experiencing problems accessing treatments and services, I created my blog at Frequently Fibro and began learning about advocacy.
I started out by making connections in my local fibro community, to educate myself and gain insight. I had open dialogues with several other persons with fibromyalgia. I sat through pain clinic appointments and IV infusions, where those being treated would have truly amazing conversations. These chats were filled with knowledge and shared lived experience. I gained more useful information from these conversations that occurred strictly by chance, than I did from the combined knowledge of many health care professionals. Having community support was empowering and helped to alleviate some of my worries and frustrations. This informal support group left a profound impression on me that not only revealed major gaps that exist within medical health services, but also illuminated the need for kindness and understanding in an unforgiving world.                               
I was inspired to read about fibromyalgia, both the factual and the fabulous musings of the Butterfly Warrior over at Fighting Fibromyalgia and Chronic Pain. Everything she writes speaks to me, helps me feel less alone and more understood. I met some wonderful people along the way from the United States who are advocates for fibromyalgia and we found we are all experiencing the same issues; not only is there a physical component to fibromyalgia, but many patients are impacted on a socio-economic level.
Thank you Kristal Kent at The Fibromyalgia Pain Chronicles and Veterans Voices for Fibromyalgia and Melissa Talwar at Support Fibromyalgia network for always being open and providing inspiration within the community. You are both so inspiring and fabulous! These advocates show pure kindness and support, which is truly admirable. They know the only way to change the current situation with fibromyalgia is to collaborate and unify.
As COVID-19 began, persons with fibromyalgia experienced cuts and changes to the treatment of chronic pain, less support in terms of medical treatment and essentially, a lack of services. The problem is that many people with fibromyalgia have been “lost in the shuffle”, having no specialist care and have not been provided with any clear medical treatment plan.  Additionally, people with fibromyalgia often acquire other medical conditions.  This often leads to an exacerbation in symptoms, and negatively impacts the individual's mental health.

I experienced a void as I struggled to get better medical investigation and diagnosis, and spent almost two years waiting for services. I blog to share my journey and thoughts, so others who relate might feel better and find some measure of support. I blog to have some measure of control over my life. I blog to remove the stigma that exists for this illness and to be heard. I blog with the hope that at least someone is positively affected and finds comfort in my words - that they truly feel less alone and diminished.
I soon learned that many like-minded people with fibromyalgia want effective changes to the medical system, access to treatments and above all, to be taken seriously. I became involved with the founders and Steering Committee members of Fibromyalgia Association Canada (FAC), in forming a national organization for fibromyalgia. Again, I was struck by the members’ support, compassion, and unwavering dedication to helping others along the way. Their individual strength in character, what they have endured, overcome, and how they push through some hard days to work towards the empowerment of persons living with fibromyalgia is truly inspiring.
It’s a wonderful thing when people come together in a volunteer capacity, to work towards a collective good.  Especially people who have never directly met each other, from vastly different backgrounds, and from all over the nation. The most incredible aspect of it all is that all these volunteers have virtually come together all while coping with chronic illnesses that impact their daily functional abilities. In a few short months, much has been accomplished in the collective goal of uniting the many voices of fibromyalgia across the nation.
I was warmly welcomed into Fibromyalgia Association Canada and found a caring group of people who all are working passionately towards fibromyalgia advocacy and awareness. The members are invested in bringing about positive change for those living with fibromyalgia. Each person involved at FAC struggles with fibromyalgia and shares in one another’s journey with this chronic illness. We have all experienced the lack of medical investigation, the delayed diagnosis, having no specialist for fibromyalgia and the knowledge that there are currently no advancements in research.  Sometimes it’s the little things that bring comfort, like being with people who understand you when not many others do. It is in those little things that big things can happen…