The Dangers of Toxic Perfectionism When You Live With Chronic Illness

Have you created a 40 item treatment plan in your bullet journal? Do you judge yourself daily for not meditating, taking all your supplements, doing your strengthening exercises, pacing, or other lifestyle treatment strategies? You’re probably applying perfectionism towards your pain self-management treatment plan. Of course, you probably know that all the guilt and self-blame isn’t helpful, but it’s hard to stop the judgemental voice in your head that says “What’s wrong with you? You couldn’t even find 10 minutes in your entire day to meditate?”

According to science, there are three types of perfectionism: self-oriented, socially prescribed, and other-oriented (Willard, 2019). Let’s take a look at what each of these mean in turn and how they can impact life with chronic illness.

Self-oriented perfectionism means that you set unachievable standards for yourself, and then berate yourself for failing to live up to them. For individuals with chronic illness, this can play out in two different ways. In life before illness, you had ambitions to be great at whatever it is you loved doing. You drove yourself hard in pursuit of those goals. And then along the way, you got sick. Now, you may blame yourself for becoming ill, seeing it as a failure, and judging yourself harshly for not succeeding at living up to your pre-illness potential. In comparison to your pre-illness abilities, you may now criticize yourself for struggling to do basic things like do the laundry, make the bed, write a blog article, cook dinner, meet a friend for coffee.

The faulty premise behind this thinking is that we have complete control over our symptoms, and it’s just a matter of finding the right combination of treatments, when in reality most of the strategies mitigate illness symptoms, but don’t cure them. Fear of losing control, and the difficult emotions of disappointment, frustration, shame, and guilt, drives us to try harder to get it right. But sometimes what we really need to do is give ourselves a break, and acknowledge the flux of illness symptoms is beyond our control, and that it’s better to go with the flow of our illness than steer a course upstream.

Socially prescribed perfectionism means that important people in our lives, or society at large, are holding us to unrealistic standards. The pressure to put on a mask and pretend that everything is fine is overwhelming. It can be an important strategy to avoid the pain of being disbelieved or having intrusive questions asked. There is a huge amount of social pressure to end conversations on a positive note, like saying “But I have a new referral to another specialist that I’m really hopeful about.” People with chronic illness are all too familiar with the toxic positivity evangelists who healthsplain that all you need is the right attitude and you will be cured. I had a doctor who blamed the failure of a treatment (a nerve block) on the fact that I became emotional during the procedure (having four-inch needles poked into your nerves while being ignored by a team of doctors can do that!). God forbid you express frustration or sadness during an appointment as you discuss your life-changing illness! If I had kept my positivity mask on, then I wouldn’t have been blamed for the failed treatment. Socially prescribed perfectionism is the mask you feel you have to wear outside of your inner circle. But sometimes, we impose this mask onto ourselves, when we could admit we’re not ok, and ask for help. In these situations, socially prescribed perfectionism gets in the way, because we want to been seen by ourselves, and others, as holding it perfectly together.

Other-oriented perfectionism is less relevant to individuals with chronic illness as it involves holding other people to our high standards. However there can be a disappointing reaction among some people in the chronic illness community to an individual expressing their no-end-in-sight distress. The “but have you tried…” response piles judgement on someone who is suffering. Even worse is the “but I cured myself doing…” Expressing sympathy means acknowledging each person’s situation is unique, and accepting others where they are at, instead of lecturing them on not trying hard enough.

 Proponents of mindfulness (*raises hand*) and cognitive behavioural therapy (CBT) need to be aware that communicating the message to others that their illness occurs because they are “thinking wrong” is damaging and harmful. It simply reinforces toxic perfectionism by blaming the individual, and inviting the individual to self-blame, by suggesting that thinking patterns can cause or cure illness. Instead, we should explain the difference between the physical pain of illness and the mental/emotional suffering caused by illness. Strategies like CBT or mindfulness can reduce the suffering of illness, and sometimes alleviate the physical discomfort of the illness. But not practicing CBT or mindfulness strategies does not cause illness, nor does practising CBT/mindfulness cure illness.

So how can you break free of toxic perfectionism? Befriend yourself. Treat yourself with the understanding and kindness of a good friend. “What would a best friend say?” is something you can ask yourself when you’re feeling anxious, guilty, critical, frustrated, or ashamed. Or to flip the question, “What would I say to a friend or family member if they were in my situation?”

“You’re only human,” “we all make mistakes,” “this isn’t your fault,” “you can always begin again tomorrow,” “maybe this is just beyond your control right now,” “what is something nice you can do for yourself right now?”are all things you can get used to saying to yourself. There are self-compassion meditations (loving-kindness meditations) that you can do to practice reacting with compassion instead of judgement. In these practicrs you repeat silently to yourself wishes, or blessings, for your own well-being: “May I be safe, May I be peaceful, May I embody self-kindness, May I live fully” are the ones that resonate with me. Here are some further resources:

Tara Brach, Radical Acceptance: Embracing your life with the heart of the Buddha

Kristin Neff, Self-Compassion: The proven power of being kind yourself Christopher Germer, The Mindful to Self-Compassion

References

Willard, K. (2019, June 17). Perfectionism and Chronic Illness. Psychology Today. Retrieved from: https://www.psychologytoday.com/ca/blog/chronically-me/201906/perfectionism-and-chronic-illness

Flett, G.L, Baricza, C., Gupta, A., Hewitt, P.L., & Endler, N.S. (2011).  Perfectionism, psychosocial impact and coping with irritable bowel disease:  A study of patients with Crohn’s disease and ulcerative colitis.  Journal of Health Psychology, 16(4), 561-71.  

Linnett, R. J., & Kibowski, F. (2018, June 22). A closer look at multidimensional perfectionism and multidimensional self-compassion. https://doi.org/10.31234/osf.io/bcu37 

Molnar, D.S., Sirois, F.M., & Methot-Jones, T. (2016).  Trying to be perfect in an imperfect world:  Examining the role of perfectionism in the context of chronic illness.  In F.M. Sirois & D.S. Molnar (Eds.), Perfectionism, Health, and Well-Being, pp. 69-99.  Switzerland:  Springer International Publishing. 

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Dear Dr: No, A Number Between 0-10 Does Not Measure My Pain Accurately

At most doctor appointments, I’ve been asked to rate my pain between 0-10. It goes like this:

              Dr.: How would you rate your pain?

              Me: Which one?

              Dr. Ummm….Overall.

              Me: Like an average of all my current pains right now? Or the worst one I’ve experienced today?  Or a median of my pains on a typical day? Or-

              Dr.: ???????????

The doctor usually tells you to rate your pain with 0 representing no pain, and 10 being the worst pain you’ve experienced in the “pain numeric rating scale.” But by asking patients to rate their current pain as one reductive, simplistic overall number, your doctor may miss the multi-dimensional impacts of living with chronic pain.

I’ve Got PainS

Chronic pain fluctuates widely across the location(s) in the body where it is experienced, and over time. Right now I have a 7 in my right SI joint/sciatic nerve,  5 in my right shoulder,  4 in my left pelvis, 4 in my right wrist, 3 in my neck, and 3 in my right foot. In a few hours, those numbers will change completely, and perhaps even become inverted. So knowing how I would rate these pains in this moment doesn’t really indicate anything about the clinical significance of the pain. For example, I experience my most significant pelvic pain at night, so asking me to rate it at my afternoon appointment will not accurately reflect the severity of the pain. Intermittent pain, breakthrough pain, and pain flare-ups are not captured in present moment pain ratings. It would be more accurate to record each pain over a week or month in a pain journal, to see how each part of my body is affected over time.

If you’re trying to understand the cause of pain, the knowing its quality or characteristics – aching, throbbing, shooting, stabbing, etc. – gives important clues. The 0 to 10 rating scale misses this important aspect of the experience of pain.

Most chronic pain patients have multiple overlapping conditions. You lose the ability  to understand and treat these very different issues when you ask the patient to lump all  their pains together and give one overall number. My pelvic pain and sciatic pain is neuropathic, the shoulder, wrist and neck pain is muscular, and my foot is mechanical pain from uncomfortable positioning.   The doctor cannot determine how a treatment is affecting the pain levels of a specific condition, such as endometriosis vs mechanical joint problems vs neuropathy, if you average all body pains together.

My Pain Isn’t Your Pain Isn’t My Pain

 Or being the worst you can imagine. These are two very different 10s. Since the onset of my chronic pain, I’ve experienced worse pain than I ever could have imagined in my life before illness. And now, I can imagine the worst pain I’ve ever experienced expanding to affect every part of my body, and it fills me with terror. In other words, my ‘worst pain I can imagine’ 10 has been recalibrated by my experience of having chronic pain. You can’t really compare these two 10s to each other, given how subjective and experiential pain is. Comparing 10s between patients only multiplies these discrepancies and confusion.

You are asked to rate pain between 0-10, where 10 is the worst pain you’ve experienced. Or 10 is the worst pain you can imagine. These are two very different 10s. Since the onset of my chronic pain, I’ve experienced worse pain than I ever could have imagined in my life before illness. And now, I can imagine the worst pain I’ve ever experienced expanding to affect every part of my body, and it fills me with terror. In other words, my ‘worst pain I can imagine’ 10 has been recalibrated by my experience of having chronic pain. You can’t really compare these two 10s to each other, given how subjective and experiential pain is. Comparing 10s between patients only multiplies these discrepancies and confusion.

Missing The Impact Of Pain On Daily Functioning

Why are we rating pain at all? In order to evaluate the severity of pain as a symptom on the health and daily functioning of a person. Put differently, we rate pain in order to evaluate its clinical significance, which can be defined as ” (1) pain that interferes with functioning and (2) pain that motivates a physician visit” (Krebs et al., 2007).

One study assessed the primary care pain numeric rating scale as a screening test for accurately identifying clinically significant pain in patients seeking treatment at a primary care clinic. They found that it was only modestly accurate, and it “missed [identifying] nearly 1/3 of patients with clinically important pain” (Krebs et al., 2007).

The core failing of the pain numeric rating scale is that it completely misses the impact of pain on daily functioning. And in doing so, it misses the clinical significance of pain in the lives of patients. In the 2007 study, they compared the 0-10 pain ratings with ratings from an alternative pain assessment tool called the Brief Pain Inventory interference. The BPI “measures pain-related functional impairment in seven domains: general activity, mood, walking ability, normal work, relations with other people, sleep, and enjoyment of life” as a rating between 0 (does not interfere) to 10 (interferes completely)” (Krebs et al., 2007). They found that the pain numeric rating scale missed almost 30% of patients which the BPI showed had pain that significantly interfered with their daily functioning.

How To Make An End Run Around the 0-10 Scale At Your Appointments

  • Always list the worst pain you have experienced today, or this week, not the current pain, or the average of current pains.
  • Make comparisons like, “it’s worse than when I broke my finger” or “it’s worse than when I was in recovery coming out of surgery.”
  • Don’t go with 10 unless you are in a crisis where you pain is about to kill you. Unfortunately, credibility,  involves not saying “15 out of 10”, because pain patients are not given grace or understanding.
  • Do give pain descriptors like aching, burning, shooting, stabbing.
  • Make a list of the limits on your daily functioning caused by your pain, like, “My neck pain is so bad I can no longer hold a book and read more than 1 page.”
  • Bring a pain journal you’ve kept over the past week, and a list of your worst pain levels, your average pain levels, in all your pain areas, and what limits these impose on your life.

Krebs, E. E., Carey, T. S., & Weinberger, M. (2007). Accuracy of the pain numeric rating scale as a screening test in primary care. Journal of general internal medicine, 22(10), 1453–1458. https://doi.org/10.1007/s11606-007-0321-2

Walsh, John (2017, Jan 10). How Much Does It Hurt? Independent. Retrieved from:

https://www.independent.co.uk/life-style/health-and-families/pain-how-much-does-it-hurt-pancreatitus-methods-doctors-measure-a7513101.html

How To Find Meaning Again When Chronic Pain Upends Your Life

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 become 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 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. 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, savoured 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 connection, 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, an 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.

A Gentle Guide To Moving More When You Live With Fibromyalgia [Part 2]: How To Add In Aerobic and Strengthening Activity

I think we need a paradigm shift in how we view physical activity and fibromyalgia. Consider what we mean when we talk about ‘exercise’.  Usually, it’s defined as a routine program of physical activity to improve fitness. We associate working out with breaking a sweat, feeling our heart pumping and our muscles burning. It’s something you have to push yourself through – just look at all the painful terms were use: whipping yourself into shape, hitting the gym, or burning fat. Fun stuff. Also, not going happen when you live with chronic pain. For most of us, ‘exercise’, defined as above, is a recipe for a fibromyalgia flare-up.

The conventional wisdom gives us s a false choice between “exercising” and being “sedentary”.  For the vast majority of us, it seems obvious that we can’t “exercise”,  so we resign ourselves to being those much-criticized coach potatoes. Based on my experience living with fibromyalgia for five years, I think there is a third way- focusing on movement.

In Part 1, we discussed how to start with stretching and gentle range of motion activities, like modified yoga, tai chi and qi gong, as the foundation for gently moving more.

Layer on Aerobic Activity

The next step is to begin to incorporate gentle aerobic activities. Research has consistently found  that aerobic movement is one of the most effective forms of exercise to reduce FM pain. One expert in the field argues that ” aerobic exercise is the most effective weapon we have” to treat fibromyalgia.[vii] It doesn’t need to be intensive to be effective. One study looked at increasing “lifestyle physical activity”, measured by increasing daily step counts, in patients with FM. The study found that “Accumulating 30 minutes of Lifestyle Physical Activity throughout the day produces clinically relevant changes in perceived physical function and pain in previously minimally active adults with FM”.[viii]

Walking: For many of us, the easiest and most low-cost form of aerobic movement is walking.  How you begin walking depends more on where you’re starting from:

  • If your pain has significantly limited your mobility, the best place to start walking is in your own home.  Dr. Allison Bested, an expert in FM, recommends “perimeter walking“, which she explains means “walking just inside the walls of your house or apartment” or “up and down your hallway”.[ix]  This is a simple and safe way to begin gentle aerobic activity. Perimeter walking is also a great technique to use when you are having a flare. Even if you’re already able to walk out of doors, when you get stuck at home with a flare-up, you can still include some gentle movement in your day by walking laps every few hours. If balance is a problem, make sure to use any necessary mobility aids.
  • Start low and go slow.  An excellent investment for anyone living with chronic illness is a step counter. You can use a pedometer, a Fit Bit, or an app on your cell phone like Google Fit to count your steps. This will enable you to gently increase your aerobic activity without crashing. Gradually increase the number of steps you take by 10% from your baseline. So if you take 1000 steps per day at the moment, then try adding 100 steps to your daily total. Next week, increase by a further 10%. A step counter will also allow you to compare different outings so that you stay within your limits. I was surprised to discover that a trip to my doctor included all my daily steps. This enabled me to avoid overdoing it by still trying to take a walk after my doctor appointment.

Aquatic Activity: Research shows that aquatic activity can also greatly benefit people living with fibromyalgia. Exercising in water is low-impact but provides gentle resistance, a win-win for chronic pain sufferers.[x] It’s important to only sign up for a low impact class like “Aqua Arthritis” or “Range of Motion Aquafit”. I’ve found some of these classes to be surprisingly intense, so I recommend observing one before you participate. Another alternative is to go “aqua jogging”. Many community pools have leisure or free swim (not lap swimming). If you find a time with only a few other swimmers (call ahead!), you can walk or jog back and forth across the width of the pool. If you are comfortable in the deep end, use a flotation belt so you can walk or jog. It is very liberating to have such easy range of motion in the water, which many of us with FM cannot experience on land.

Housework: Housework also counts!  This a great way to avoid crashing, because you can include daily chores as your activity for the day. Of course, this greatly depends on what you’re able to do. But if you are able to dust, sweep or put away laundry on a non-flare day, then make sure to count this as part of your daily activity. The key here is pacing. Try completing only 25% of the activity, then rest, and continue only if you feel able to. Under no circumstances should you push yourself to finish something just because you started it!

Slowly Strengthen

What I was first diagnosed with fibromyalgia, I thought muscle strengthening was an impossibility. After all, just thinking about lifting weights, doing push-ups or anything remotely similar, makes my muscles hurt. Over time, I have realized that gentle strengthening activities are not only possible but one of the best ways to reduce my pain. How do you know if you are ready to begin strengthening? Dr. Bested suggests that “if you’re able to walk for 15 to 20 minutes, it is time to start doing some strength training on a regular basis”.[xi]

  • If you can, I highly recommend to seeing a physiotherapist (physical therapist), athletic therapist, or a private pilates/yoga instructor. Doing a program of exercises that have been tailored to your abilities/limitations and designed for your specific needs is ideal.
  • One option is to use one of the at-home instructional videos for people living with fibromyalgia produced by the Fibromyalgia Information Foundation. There is a Strength and Balance DVD and a Pilates routine adapted for FM. The genius part is that the videos demonstrate modifications at three different intensity levels, so you can tailor the routine to your abilities. Personally, I enjoy the Pilates DVD particularly. The Strength & Balance DVD is at a higher level of difficulty and requires specific equipment. http://www.myalgia.com/VIDEOS/Video_Introduction.htm
  • Dr. Bested recommends an excellent general strengthening program found in the book Strong Women Stay Young by Dr. Miriam Nelson. This program recommends eight exercises that target every major muscle group in the body and describes proper technique in detail to avoid injury, no personal trainer necessary. While this book recommends using free weights, Dr. Bested explains how to adapt the program for FM: start your strength training program by doing only 2 repetitions without using any weights
    • Break the exercises into upper body and lower body, and alternate them on different days (Upper Body on Mon. & Thurs., Lower Body on Tues. & Fri.) Keep track of when you do them in a journal.
    • Add one repetition every two weeks, as you feel able.
    • If you have a flare and cannot exercise for several days, then start at a lower number of repetitions than where you left off, and gently build back up.
    • My personal two cents: Only add weights if you can comfortably do 2-3 rounds of eight repetitions per exercise, but start back at only 3 repetitions per exercise.

Don’t Forget Balance

Balance is a common challenge for people living with FM. Luckily, there are some excellent resources for improving your balance.

  • You may feel more secure walking with Nordic Walking Poles, and may in turn notice greater improvements in your fitness and quality of life! It’s important to use any mobility aids you need, because safety comes first.

Putting it all Together

The most important aspect of moving more is to do what you can, when you can. I typically stretch every day. I walk 5-6 days a week for my aerobic activity for about 20 minutes. I do my physiotherapy strengthening about 3x per week. If I have trouble getting out because of a flare, I will do a gentle yoga routine or do perimeter walking in my house.

Change positions often. Because of pain and fatigue, we are often sedentary. However, even the most ergonomic position will cause discomfort after too long. I use a break reminder app that notifies me after 30 minutes of sitting. Ideally, I perimeter walk around my home or do a couple of stretches and then sit down again. This relieves a lot of pain, while contributing to my movement goals for the day.

Don’t push it! I would like to do more yoga and more strengthening, but it can be hard when dealing with constantly fluctuating symptoms. I try to keep guilt out of it. When my inner critic comes out with a negative comment on what I haven’t done, I try to challenge that with an encouraging thought about what I have been able to do. Under no circumstances should you push yourself to finish something just because you started it!

Track Your Progress: One of the best ways to really stick with a commitment to move more is to record what you do in an activity journal. This might be as simple as noting “Stretching”; “3000 steps”, or “Completed Yoga Routine” for the day. You may also want to note any factors, like “increased back pain today”, that affected your ability to move that day. As Dr. Nelson explains “Study after study has shown that if you record your progress in a fitness program, you are much more likely to be successful”.[xii] Keeping an activity journal will motivate you, help you identify connections between movement and symptoms, and make you routines more efficient by helping you to know how much you were able to do last time. Dr. Nelson advises that keeping a log “is probably the single most important step you can take to ensure your success”.[xiii]

Create a Cue: Another technique for keeping a new habit is to link it to another daily activity. For example, I always stretch after I have my morning coffee. Because I know I will never miss my morning coffee, I’m less likely to forget to stretch by linking those two activities. I usually go for a walk with my husband when he gets home from work, so that is another ‘cue’ that I use to remember to walk daily. This may sound simple but it is a powerful way to ensure you stick to your new habit.

Tech Helps: Finally, don’t forget to take advantage of technology. Put timed reminders in your phone to support your new habits or a download a habit tracking app. I like to use a break reminder app that tells me when I have been sitting for too long, so that I can take a few steps or do a stretch. I use a stretch timer app to make sure I hold my stretches for at least 30s. There is a whole wide, wonderful world of apps to help you out and they are especially helpful for those of us with fibro fog!

Works Cited

Bested, A. (2006). Hope and Help for CFS and FM. IL: Cumberland House.

Busch, A. J. (2011). Exercise Therapy for Fibromyalgia. Curr Pain Headache Rep , 15 (5), 358–367.

Doyle, K. (2013, March 28). Upping vigorous exercise may improve fibromyalgia. Retrieved February 28, 2017, from Reuters: http://www.reuters.com/article/us-exercise-fibromyalgia-idUSBRE92R0OH20130328

Fontaine, K., Conn, L., & Clauw, D. (2010). Effects of lifestyle physical activity on perceived symptoms and physical function in adults with fibromyalgia: results of a randomized trial. Arthritis Research & Therapy , 12, R55.

Goodman, A. (2014). Aerobic Exercise ‘Most Effective Weapon’ for Fibromyalgia. Retrieved February 28, 2017, from Medscape: http://www.medscape.com/viewarticle/827054

How to Choose a Mind Body Exercise. (n.d.). Retrieved February 28, 2017, from Gaiam Life: http://life.gaiam.com/article/how-choose-mind-body-exercise

Lorig, K. (2007). Living a Healthy Life with Chronic Conditions. CO: Bull Publishing.

Moonaz, S. (2015). Yoga for Arthritis. Retrieved February 28, 2017, from Johns Hopkins Arthritis Center: http://www.hopkinsarthritis.org/patient-corner/disease-management/yoga-for-arthritis/

Nelson, M. (2006). Strong Women Stay Young. NY: Bantam Books.

OHSU Research Suggests Yoga Can Counteract Fibromyalgia. (2010, October). Retrieved February 28, 2017, from OHSU: https://news.ohsu.edu/2010/10/14/ohsu-research-suggests-yoga-can-counteract-fibromyalgia

Walsh, N. (2012). Qigong Eases Fibromyalgia Pain. Retrieved February 28, 2017, from MedPage Today: http://www.medpagetoday.com/clinical-context/Fibromyalgia/34120

Watson, S. (2016). Diving in: Water Exercises for Arthritis Relief. Retrieved February 28, 2017, from Healtline: http://www.healthline.com/health-slideshow/arthritis-water-exercises#1


[i] (Lorig, 2007, p. 93)

[ii] (OHSU Research Suggests Yoga Can Counteract Fibromyalgia, 2010)

[iii] (Walsh, 2012)

[iv] (Moonaz, 2015)

[v] (How to Choose a Mind Body Exercise)

[vi] (How to Choose a Mind Body Exercise)

[vii] (Goodman, 2014)

[viii] (Fontaine, Conn, & Clauw, 2010)

[ix] (Bested, 2006)

[x] (Watson, 2016)

[xi] (Bested, 2006, p. 76)

[xii] (Nelson, 2006, p. 198)

[xiii] (Nelson, 2006, p. 198)

Forget Exercise! A Gentle Guide to Moving More When You Live With Fibromyalgia

We need to rethink exercise, and focus instead on movement, starting with gentle stretching and range of motion activities. However, there seems to be a persistent [false] belief that if fibromyalgia patients would only get off the couch and exercise, their symptoms would miraculously melt away. This perspective permeates the health care field, from articles on managing fibromyalgia to advice from your ‘helpful’ specialist. 

For example, a recent research review notes that “Several exercise studies over the past three decades demonstrated that persons with fibromyalgia are able to engage in moderate and even vigorous exercise”.[i] One research team articulated this point of view further by saying that, while fibromyalgia patients are “worried that [exercise is] going to be painful, [it’s] more of a psychological effect”.[ii]  Further dismissing the real pain people with fibromyalgia feel when they attempt to exercise, the researchers went on to compare fibro flare-ups to ordinary muscle soreness: “Starting off too vigorously before building up endurance can be painful for anyone, with or without fibromyalgia”.[iii]

I always wonder – who are these fibromyalgia patients that are going running, hitting the gym or lifting weights at home? These vigorous exercisers seem to be the stuff of researchers’ fevered dreams – unicorns amongst us. But don’t worry, that is not the kind of advice you’re going to get here.

I think we need a paradigm shift in how we view physical activity and fibromyalgia. Consider what we mean when we talk about ‘exercise’.  Usually, it’s defined as a routine program of physical activity to improve fitness. We associate working out with breaking a sweat, feeling our heart pumping and our muscles burning. It’s something you have to push yourself through – just look at all the painful terms were use: whipping yourself into shape, hitting the gym, or burning fat. Fun stuff. Also, not going happen when you live with chronic pain. For most of us, ‘exercise’, defined as above, is a recipe for a fibromyalgia flare-up.

The conventional wisdom gives us s a false choice between “exercising” and being “sedentary”.  For the vast majority of us, it seems obvious that we can’t “exercise”,  so we resign ourselves to being those much-criticized coach potatoes. Based on my experience living with fibromyalgia for five years, I think there is a third way- focusing on movement.

A Gentle Guide for Moving More

What if you forgot about exercise and tried  ‘moving more’? Yes, forget about sweating and fat burning  and doing reps and whipping… anything.

Movement has been shown to improve fibromyalgia symptoms, but it doesn’t need to look or feel like “exercise”.[iv]  So the question becomes, how can you move more without triggering the kind of flare-up you might usually associate with exercise?  In order to answer the question, we need to understand what movement really means.

There are actually four types of movement:

  • Flexibility/range of motion: lengthening tight muscles and moving joints through the full span of movement they are intended to achieve. Includes stretching, yoga, Tai Chi and Qi gong.
  • Strength: building up the capability of muscles. Inactivity leads to weakened muscles and atrophy -a common challenge for people living with chronic illness.
  • Endurance (aerobic activity): the efficiency of your heart and lungs to send oxygen-rich blood to your muscles (cardiovascular  fitness) and the fitness of your muscles to use that oxygen for continuous  activity. Aerobic activities includes walking and aquatic activity.
  • Balance: having the strength and coordination to prevent falling, especially in the torso and legs. Tai Chi has been associated with fall prevention and improved balance.

Any type of plan to increase movement should gradually include all four elements.

Start with Flexibility: Stretching and Range-of-Motion Practices

Five years ago 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. Almost all of these limitations were significantly improved by stretching. This makes sense, considering that “Limited flexibility can cause pain, lead to injury, and make muscles work harder and tire more quickly”.[v]

Stretching: I was inspired to begin stretching by a physiotherapist (physical therapist).  I had avoided trying to stretch because it was painful. The reason turned out to be simple- I was trying to stretch the way I had pre-fibromyalgia.

  • The goal for stretching now is to be gentle – only stretch until you feel a slight pull, not a painful burn.
  • You may need to try different modifications of stretches. Listen to your body and do not push through any pain.
  • Make sure you breath while you stretch.
  • Hold each stretch for at least 30-60s for it to be effective.

It’s best to see a healthcare provider like a physiotherapist or athletic therapist for recommendations specific to you.  But this can be expensive and there are valuable online guides:

Every morning, I spend about half an hour stretching every major muscle group. Sometimes I repeat stretches during the day if I’m tight in a particular area of my body. Once I started doing this daily, I gradually began to notice improvements in my physical abilities. Now I can get up and down comfortably from the floor, easily bend forward, and do more activities without tiring as quickly. It can help to warm up before you stretch. A warm shower, several laps around your home or applying a heating pad over your major muscle groups can all help. Stretching is foundational to moving more and I encourage you to try to incorporate this practice in your daily wellness plan.

Flexibility and Range-of-Motion Practices:  Yoga, Tai Chi, and Qi Gong, are all range-of-motion or flexibility exercises.

Research is clearly on the side of trying these practices to manage your fibromyalgia symptoms. The Oregon Health and Science University published a study in 2010 that compared the impact of an eight week yoga program on FM patients against a control group who received standard FM treatment. Researchers found that “pain was reduced in the yoga group by an average of 24 percent, fatigue by 30 percent and depression by 42 percent”.[vi]  Decreases in pain have also been found in studies on the benefits of Qi Gong[vii] and Tai Chi for fibromyalgia.

Many flexibility/range-of-motion exercises programs also share a common feature as mind-body movement practices. “Yoga is a set of theories and practices with origins in ancient India. Literally, the word yoga comes from a Sanskrit work meaning “to yoke” or “to unite”. It focuses on unifying the mind, body, and spirit, and fostering a greater feeling of connection between the individual and his/her surroundings”.[viii] Greater body awareness, stress reduction, emotional balance, and improved energy are all benefits of mind-body exercise programs.

Below is a quick primer on these types of practices so you can pick the right one for you and a link to programs that I have tried and enjoyed:

            Yoga: “Yoga involves directing your attention and breath as you assume a series of poses,        or stretches”.[ix]

            Qi Gong and Tai Chi: “The term Qi Gong (or chi kung) describes the complete tradition      of spiritual, martial and health exercises developed in China. Tai chi is one of the most       common of these. Practicing Qi Gong involves performing a series of movements while     paying attention to the body and staying aware of the breath. The exercises are especially             effective for developing balance, focus, coordination and graceful, centered          movement”.[x] Tai Chi for Arthritis by the personable Dr. Paul Lam is an evidenced based at-home program that relieves pain, improves quality of life and prevents falls (also provides a seated program): http://taichiforhealthinstitute.org/programs/tai-chi-for-arthritis/

Part 2: A Gentle Guide to Aerobic Activity, Strengthening and Balance Training When You Live With Fibromyalgia


[i] (Busch, 2011)

[ii] (Doyle, 2013)

[iii] (Doyle, 2013)

[iv] (OHSU Research Suggests Yoga Can Counteract Fibromyalgia, 2010); (Walsh, 2012)

[v] (Lorig, 2007, p. 93)

[vi] (OHSU Research Suggests Yoga Can Counteract Fibromyalgia, 2010)

[vii] (Walsh, 2012)

[viii] (Moonaz, 2015)

[ix] (How to Choose a Mind Body Exercise)

[x] (How to Choose a Mind Body Exercise)

Can Essential Oils Actually Help Relieve Fibromyalgia Symptoms?

You may be surprised to learn that research shows some essential oils have medicinal effects that may help improve fibromyalgia symptoms.  There are three main symptoms that essential oils can help relieve: anxiety, insomnia/fatigue and pain.

Essential Oils for Stress and Anxiety

Living with chronic pain and illness can be emotionally overwhelming.  There are days when I feel anxious over an upcoming appointment, frustrated by the limitations caused by pain and fatigue, worried about the uncertainty of flare-up…and the list goes on and on.  Managing stress by making time for relaxation can help you cope with anxiety.   There are a number of essential oils that help promote relaxation.  For example, according to the University of Maryland Medical Center, “Scientific evidence suggests that aromatherapy with lavender may slow the activity of the nervous system, improve sleep quality, promote relaxation, and lift mood in people suffering from sleep disorders”.[i]  Many of the same essential oils used for relaxation can also be used to promote sleep.

One of the best ways to use essential oils for anxiety is through aromatherapy (diffusing the oil through the air and inhaling its sent).  Essential oils are believed to work when compounds that are inhaled enter the blood stream and are carried to the brain or other organs. You can use a diffuser, which mists droplets of oil through the air, or an aromatherapy oil burner, which uses the heat from a candle to vaporize the oil.  For a very inexpensive alternative, you can put a few drops in the melted wax of a burning candle!

  • Other oils to consider for anxiety relief include: rose otto, frankincense, clary sage, sweet orange, bergamot, grapefruit, ylang ylang, sandalwood, neroli, sweet marjoram, petitgrain, mandarin, lavender, rose geranium, tangerine, jasmine.[ii]

Essential Oils for Fatigue and Brain Fog

Aromatherapy can also be used to promote energy and mental clarity. Fatigue and brain fog are two of the most challenging symptoms experienced by people living with fibromyalgia.  They are also two of the most difficult to treat.  I was excited to learn that rosemary oil can help with brain-fog symptoms. According to a recent study, rosemary oil diffused throughout a room helped participants perform significantly better on a memory test than participants in a control room.[iii]  This appealed to me because brain fog affects my word recall and short term memory.  The refreshing smell of lemon oil and other citrus oils is thought to be energizing.  Peppermint and wintergreen oil are also used to improve vitality.

Essential Oils for Pain

Finally, essential oils can help alleviate the muscle pain that is a constant companion for many people living with fibromyalgia. Essential oils relieve pain by improving circulation, reducing inflammation and calming irritated nerves.[iv] The most efficient way to use essential oils for pain relief is through massage.  A few drops of essential oil should be diluted in a carrier oil of cold-pressed nut, seed or vegetable oil – approximately 10-12 drops of essential oil in 1 ounce of carrier oil.

  • Pain relieving herbs include: spike lavender, sweet marjoram, lavender, petitgrain, Roman and German chamomile, clary sage, lemongrass, helichrysum, peppermint, ginger and black pepper. Spike lavender with peppermint and helichrysum creates an anti-inflammatory synergy.

Blending essential oils is a creative art. In general, most floral oils blend well together, as do most woody oils.  Massage Today recommends three blends for fibromyalgia[v]:

  •  4 drops of lavender, 1 drop of frankincense, 4 drops of sweet orange, and 1 drop of neroli
  • 4 drops of sweet marjoram, 1 drop of Roman chamomile, 4 drops of mandarin, and 1 drop of rose
  • 4 drops of lavender, 4 drops of rose geranium, 2 drops of rosemary, and 1 drop of lemongrass

[i] http://umm.edu/health/medical/altmed/herb/lavender

[ii] http://www.massagetoday.com/mpacms/mt/article.php?id=13377

[iii] http://www.bbc.co.uk/news/magazine-33519453

[iv] http://www.massagetoday.com/mpacms/mt/article.php?id=14048

[v] http://www.massagetoday.com/mpacms/mt/article.php?id=13377

How To Communicate Better About Your Chronic Pain & Set Healthy Boundaries

I hope the tips here can help you to feel more comfortable and confident communicating about your pain, and setting boundaries with others, so that you can focus on taking care of your health. Explaining pain in words is like trying to translate a word from one language into another, except that there is no equivalent word in the other language with the same meaning.

Chronic pain presents significant communication challenges for our relationships, such as needing to constantly cancel plans or having to ask for help. After all, relationships can be tricky enough without the additional complexities of living with chronic pain!

Communicating With Your Doctor About Your Pain

Doctors often attempt to simplify the problem of describing pain by asking patients to rate their pain on a number scale out of ten. Personally, I find this frustrating because one number cannot capture the whole picture of what my pain feels like. When I researched this topic I found a great tool, called the LOCATES scale (Health), for overcoming this challenge. It provides a framework for explaining all the dimensions of chronic pain:

L: Location of the pain and whether it travels to other body parts.
O: Other associated symptoms such as nausea, numbness, or weakness.
C: Character of the pain, whether it’s throbbing, sharp, dull, or burning.
A: Aggravating and alleviating factors. What makes the pain better or worse?
T: Timing of the pain, how long it lasts, is it constant or intermittent?
E: Environment where the pain occurs, for example, while working or at home.
S: Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.

Try writing out your answers to each corresponding letter before your next appointment and share them with your doctor. I hope it helps you feel like you’ve communicated all of the dimensions of your pain!

Communicating With Your Loved Ones About Your Pain

When it comes to friends and family members, pain is a thorny subject. Chronic pain causes stress and heightened emotions. It’s completely natural to snap or get upset during a difficult conversation when you’re in pain. Sometimes just letting your loved ones know how you’re doing that day can help them adapt accordingly. You can try to use the LOCATES scale with your family members to help them understand more fully what you are experiencing.

The Chronic Pain Couple recommends “logging your daily pain levels in a pain app, [then] screenshot and text the daily summary to your partner before they get home from work…This will help your partner understand what your physical capacity is so that they can adjust their expectations of you accordingly.”

Sometimes family members or friends may doubt that your chronic pain is real, criticize how you handle your pain or even accuse you of being lazy if you have to cancel plans because of pain. Even the most supportive people can sometimes be insensitive or say the wrong thing.

 I’ve found that knowing how I want to handle different communication challenges associated with chronic pain ahead of time is helpful to improving my communication with the important people my life.

De-escalate Tension to Express Yourself  Clearly

Feeling like you aren’t being heard or that you are being judged when you communicate about your pain is frustrating. On top of that, it’s difficult to express yourself clearly when you are hurting and feel emotionally reactive or defensive.

 One way to de-escalate tension and have a more productive conversation is to take a pause before responding to an upsetting comment. The first step is to notice that you feel angry, hurt or upset. If identifying the feeling is tricky, look for physical cues of emotional reactivity – clenched jaw, stomach knot, tight chest, constricted throat or increased heart rate. Then intentionally take a pause until you feel ready to respond from a place of self-awareness. This could be as short as counting to 10 or as long as waiting until your pain flare has passed to continue the conversation. Sometimes I find going into another room and taking a short mindful meditation break (focusing on my breath for three minutes) really helpful.

Dealing With Unwanted Advice

In my experience there are two types of advice: well-meaning suggestions from someone who genuinely wants to help and judgmental statements framed as “advice.” In responding to the former, I like the advice from Live Plan Be: “The key is to find ways to respond to others that don’t drain you or get you riled up… You can give them a positive response without agreeing or committing to follow their advice.” An example might be “Sure, I’ll keep that in mind.”

Dealing with judgment in the form of advice (“maybe if you got off the couch and exercised more then you would feel better”) is another story altogether. Rather than feeling the need to explain yourself, and going around in circles, it’s best just to be direct and say politely that you aren’t interested in their advice: “When it comes to my health, it’s important to me that I do what I think is right. When you tell me what you think I should do, it’s not helpful to me. It would mean a lot if you would not do that anymore.”

Establishing Boundaries And Sticking To Them

Setting healthy boundaries is good for everyone, but it’s particularly important for people with chronic pain. The reality is that we face physical limitations, and pushing them has severe consequences in the form of pain and fatigue. It can be hard for the people around us to accept these limitations and to not take them personally. These limitations can put a strain on our partners and families, whose lives are also changed by our chronic conditions. The urge to avoid disappointing people is hard to resist and learning to put your health needs first is a difficult transition for many of us. But speaking up is important for your health and well-being! There are many positive personal benefits that result from learning to advocate for yourself, like greater self-confidence and agency, feeling more centered, and feeling that you are living with greater authenticity.

If possible, try to make a request to set a new boundary in a constructive way. Ask in a calm but firm manner, at a time when the other person is more likely to be receptive. When you clarify a new position in a relationship, speak in terms of “I” rather than “you” to minimize defensiveness on the part of the other person. It’s important you also stick to the boundary you have set, otherwise it’s unlikely the other person will too. Live Plan Be suggests a helpful tool for setting boundaries called the ‘Feedback Formula’:

When you … call me at 11pm at night (describe the person’s behaviour),

I feel… upset and frustrated (describe the emotion you feel), 

and the result is…my sleep is interrupted, and it that increases my pain (describe the effect of you experiencing that emotion). 

Would you be… willing to call me before 8pm instead?” (make your request).

In this example, after setting the boundary, don’t answer the phone after 11 pm, in order to reinforce the line you have drawn.

Ultimately, there’s no way to express yourself perfectly in every situation, and you aren’t to blame if other people can’t or won’t listen. If someone protests the boundaries you have set, try to remember that it’s their problem, not yours. It’s just further proof that the boundary line is needed. Focus on nurturing your healthy relationships, and put toxic relationships on the backburner. “Remember, you don’t need to apologize for setting good boundaries that help you stay healthy, manage your symptoms, and feel your best while living with chronic pain” (My Chronic Pain Team).

Hopefully these tips can help you communicate more clearly about your pain, and establish boundaries with others, so that you can prioritize your self-care.  

Resources

Chronic Pain Couple (Top Tips For Communicating With Your Partner About Pain)

Health (How to Describe Your Pain to Doctors)

Harriet Lerner (The Dance of Anger, 2005, HarperCollins: NY)

Live Plan Be – Pain BC (Four Communication Tools for Close Relationships)

My Chronic Pain Team: How Good Boundaries Make Life Easier

Why Acupuncture Works For Chronic Pain, According To Science (And How To Make It Work For You!)


Acupuncture is the therapeutic use of very thin, hair-width needles to stimulate specific points on the body to reduce pain or disease and promote wellbeing. Before I was diagnosed, I never had expected to become an acupuncture aficionado. My impression was that it seemed like a painful way to go about treating health conditions. I was also skeptical about how effective it could be. However, like many other chronic pain patients before me, the limited treatment options at my doctor’s office left me searching for alternatives. Trying acupuncture started to make sense. After looking into it and trying it myself, I have realized that it is a valuable tool in my chronic pain treatment toolbox.

Acupuncture has been used for over 3,000 years and is an integral part of Traditional Chinese Medicine (TCM). In this medical system, health is understood as achieving a balance between opposing forces (yin and yang). Traditionally, essential life energy, called ‘qi’ (chee) is believed to flow along channels in the body called meridians, keeping yin and yang balanced. Acupuncture points are mapped along meridians. If the flow of qi is blocked, it causes pain and disease (imbalance). Stimulating acupuncture points restores the flow of qi along the meridians, improving the health of the individual and restoring balance.

Western medicine offers a different perspective on how acupuncture works. Scientific studies show that acupuncture points are frequently located on nerve bundles or muscle trigger points (Beck, 2010). Acupuncture has been found to increase blood flow to tissues around the acupuncture point, promote healing of localized tissues and affect the central nervous system (Beck, 2010). Some of the nervous system effects include down-regulating pain sensation, encouraging a relaxed brain state, and calming the autonomic nervous system (Beck, 2010). However, some sceptics believe these findings only demonstrate a strong placebo response to acupuncture.

Dozens of studies have investigated whether acupuncture is an effective treatment for chronic pain. The National Centre for Complementary and Integrative Health (2016) explains that “Results from a number of studies suggest acupuncture may help…types of pain that are often chronic,” including low-back pain, neck pain and osteoarthritis. Acupuncture may also reduce the frequency of tension headaches and prevent migraines (NCCIH, 2016).

A recent study by Vas et al. (2016) investigated the effectiveness of individualized acupuncture treatment programs for patients with fibromyalgia (as opposed to most studies that use a standardized treatment program). Tailored treatments were compared to “sham acupuncture” treatments – needles inserted at random points on the body. Researchers found that, after nine weeks of 20 minute treatment sessions, individuals who received the tailored acupuncture reported a 41% decrease in pain compared to 27% for the sham acupuncture group (Vas, 2016).

The NCCIH (2016) explains that one of the benefits of acupuncture is the low-side effect profile (when conducted by a credentialed acupuncturist using sterilized needles). Since medication for chronic pain often causes significant side effects, this makes acupuncture an attractive treatment option for people living with chronic pain.

If you’re interested in trying to acupuncture, you should be aware that there are two broad types of practitioners. The first are practitioners of Traditional Chinese Medicine Acupuncture, and should have their certification accredited by a recognized professional body like the National Certification Commission for Acupuncture and Oriental Medicine. The second school of acupuncturists practice Contemporary Medical Acupuncture, based on western medical principles rather than balancing qi in the body. Often these practitioners are physiotherapists (physical therapists), naturopaths, or chiropractors who have received additional certifications in this area.

How do you decide which type of practitioner to see? TCM acupuncturists will treat your from a whole-body perspective, and may offer new insights or see connections other medical professionals have missed. Contemporary medical acupuncturists are probably most effective at treating specific musculoskeletel problems. For example, my physiotherapy sessions have become more effective at relieving neck and low back muscles spasms since my therapist began incorporating acupuncture. In contrast, my TCM acupuncturist has helped me reduce my overall number of flares, stress and fatigue, but is less helpful at resolving immediate problems. I have to add that TCM acupuncturists are often much more adept at inserting needles painlessly – after all, this is their area of expertise! 

You may be thinking “But I hate needles; this sounds too painful!” In my own experience, the needle insertion feels like a slight pinch, which disappears in 3-5 seconds. If there is any discomfort, the acupuncturist will remove the needle. After insertion, you usually cannot feel the needles. Occasionally, there may be a sense of warmth or heaviness around the insertion point. The needles are typically left in for 15-30 minutes while you rest.

There is a wide variation in the skill level and “bedside manner” of acupuncturists. For that reason, it’s important to do your research and come prepared with a list of questions:

  • Research the practitioner you are considering seeing to ensure that they have a recognized certification from an accrediting body.
  •  Ensure that the clinic has a clean needle policy – that all needles are pre-packaged, sterilized and unused (I have never come across a clinic that does not do this, but better to be safe than sorry!)
  • Contact the clinic and ask whether they have experience treating clients who have similar chronic pain conditions. Do not go to a spa or aesthetician for pain treatment!
  • Ask that they provide extra pillows to support your body while lying down and a treatment table with a head cradle (an oval opening for face support when you are lying on your stomach, so you do not need to turn your head to the side.
  • Ensure that they provide you with a way to call for assistance. It is uncomfortable to move while needles are inserted, so it is imperative that you can get help. The clinic should be able to provide you with a button to push to summon help or that someone can hear you easily.
  • Tell the practitioner if this is your first time receiving acupuncture. Ask that they only use 5 to 10 needles so that you can test how your body will respond. There is no need to trigger a flare by starting with aggressive treatment.
  • You may be offered additional treatments, like acupuncture with a mild electric current, cupping (using suction cups) or moxibustion. Make sure all your questions are answered before you start and always ‘trial’ the treatment the first time. Once, I agree to have my entire back suction cupped, and I had the pain and bruises for days afterward. If I had only allowed a small area to be cupped, I could have realized this treatment wasn’t for me without the suffering!
  • Just like with anyone who is a part of your treatment team, it’s important to make sure that you get along and that they provide patient-centered care.

References:

Beck, M. (2010). Decoding an Ancient Therapy. Wall Street Journal. Retrieved Oct. 15, 2016, from http://www.wsj.com/articles/SB10001424052748704841304575137872667749264

Nahin, R., et al. (2016). Evidence-based evaluation of complementary health approaches for pain management in the United States. Mayo Clinic Proceedings, 91(9): 1292-1306. doi: http://dx.doi.org/10.1016/j.mayocp.2016.06.007

NCCIH. (2016, January). Acupuncture: In-Depth. Retrieved Oct. 15, 2016, from https://nccih.nih.gov/health/acupuncture/introduction

Vas, J., et al. (2016). Acupuncture for fibromyalgia in primary care: a randomised controlled trial. Acupuncture in Medicine, 34: 257-66. doi: 10.1136/acupmed-2015-010950.

Vickers, A. J., et al. (2012). Acupuncture for Chronic Pain Individual Patient Meta-analysis. Arch Intern Med. 172(19): 1444-53. doi:10.1001/archinternmed.2012.365

Here’s How I’m Staying Sane in 2020: Easy, Lazy De-Stressors

Here's How I'm Staying Sane in 2020

2020 is basically a global dumpster fire. It’s hard to find the positive any way you look at things, from the pandemic, to politics, to police brutality. Due to chronic pain, I already have a low stress threshold. It’s all just too much some times.

Personally, I’m struggling to keep up with my meditation practice, even though I know it helps me. Instead I’m trying to be mindful while I do everyday tasks, like taking a walk, making dinner of even brushing my teeth. Instead I’m finding that turning to comforting, enjoyable things is the best way to de-stress and stay sane (more or less?).

Just hoping I might get around to nature walks or cat cuddles means I either forget, or I don’t mindfully take it in. Walking through a park while looking at my phone cancels out the benefits. So, I’ve found that intentionally seeking these things out and planning to do them has helped me to make them  part of my routine. Which one of these ideas do you find most helpful?

Animal Companionship

If I was going to name the reasons why I love the company of my cat Sara, I would list her affection, her funny antics and her general adorable-ness. But it turns out that, in addition, spending time with her is also good for my health. Specifically, animal companionship can reduce pain, lower stress and improve mood in people with chronic pain (Confronting  Chronic  Pain). These benefits are experienced not only by pet parents, but by anybody who spends time with an animal. If adopting a cat or dog is not feasible for you, consider visiting regularly with a friend or family member’s pet. You can also talk with your doctor about clinics or organizations that provide therapy dog visits – even a couple of short sessions per week can make a difference!

Commune With Nature

The power of flowers: did you know that just looking at images of nature is enough to reduce your stress and anxiety? A 2015 study published in the International Journal of Environmental Research and Public Health found that just five minutes spent gazing at natural photos promotes relaxation and recovery after experiencing a stressful period. Who doesn’t need some of that right now?!

Of course, getting out into nature is even better: it lowers stress levels and boosts mood. It help us to get out of our heads, stop ruminating about our worries and pay attention to the here-and-now. One study showed that walking in a forest lowered blood pressure and reduced levels of the stress hormone cortisol (NBC). You don’t have to be able to hike to enjoy nature. As long as you are in a natural setting – sitting on a bench, enjoying a picnic, or lying back with the car doors open– are all ways to enjoy the benefits of relaxing outside. Recently, I researched accessible parks and paths in my area and have been able to spend several lovely afternoons relaxing in nature – I always feel better for several days afterwards!

Tune in to Music

Listening to music is a powerful way to de-stress. Music directly impacts our feelings via the unique effect listening to it has on the functioning of our brains and bodies. Research has demonstrated that listening to music, particularly calming classical music, causes lower blood pressure, reduced heart rate and a drop in stress hormones (Psych Central). Music acts as a positive distraction, while also anchoring us in the present moment. But the benefits don’t stop there. Tuning in for an hour a day has been found to reduce pain and depressionby up to a quarter (Science Daily.) In this study, it did not matter whether participants listened to their favourite relaxing music or music chosen by researchers. I’ve found that listening to music when I’m having trouble sleeping or experiencing a lot of fatigue is very renewing.

Try Probiotics

Could the way to mental health be through your stomach? An emerging field of research has found links between probiotics (healthful bacteria that live in the digestive tract) in the gut and brain function. Some probiotics produce neurotransmitters (chemicals that regulate the nervous system), such as serotonin, that affect mood. When neurotransmitters are secreted by probiotics in the digestive tract, they may trigger the complex nerve network in the gut to signal the brain in a way that positively effects emotions (University Health News). In some studies, certain probiotics have been shown to reduce stress, anxiety and depression, including Lactobacillus acidophilus and Bifidobacterium bifidum. Probiotics can be taken as a supplement or eaten in fermented foods like yogurt, kefir, kombucha, miso and kimchi.

Laughter is the Best Medicine

We’ve all heard that laughter is the best medicine, but we feel stressed it can be hard to find the humour in things. However, laughter is one of the best antidotes for stress and anxiety – just 5 or 10 minutes can reduce muscle tension, increase endorphin levels, lower blood pressure and regulate levels of stress hormone cortisol (Adrenal Fatigue Solution). Rather than hoping something funny will happen on a stressful day, take advantage of the benefits of laughter by watching your favourite comedy show, sitcom or stand-up comedian. I find it hard to stay in a bad mood after watching late night TV, and who doesn’t love being able to say that you have to watch another episode of your favourite sitcom because it’s good for your mental health?

 

Resources:

Adrenal Fatigue Solution (The stress-relieving benefits of laughter)

Confronting Chronic Pain (Can a pet help your chronic pain?)

NBC (How the simple act of being in nature helps you de-stress)

Psych Central (The power of music to reduce stress)

Science Daily (Listening to music can reduce chronic pain and Depression by up to a quarter)

University Health News (The best probiotics for mood: Psycho-biotics may enhance the gut brain connection)

Managing Social Media Before it Manages You: Digital Wellness for Chronic Illness in the Time of Covid-19

Managing Social Media Before it Manages You: Digital Wellness for Chronic Illness in the Time of Covid-19

When I woke up this morning and signed into my social media feed, the first pose I saw said “‘The attitude of gratitude always creates an abundant reality’ ~ Roxana Jones” with the hashtags #gratitude #motivation #positivity #blessed. Somehow, all it made me feel was #unmotivated #negative and #irritated.

The next social media post I read this morning was the polar opposite of the first. It was about the untold cost of the lack of medical care for non-covid illnesses during the lockdown. Brutally accurate, but also triggering. In April, I was supposed to  have a pain relieving nerve ablation surgery, which I’d been waiting almost a year for, but it got cancelled, like so many other surgeries and procedures. Now, it’s up in the air, and my pain is getting worse.Needless to say, after that, I felt #drained #exhausted and #depressed.

Social media is an important lifeline for people with chronic illness, and science says it’s actually good for us to use. Since few of us know other people living with illness in real life, social media offers a way to connect with other people who can actually understand what you’re going through. Being able to interact with other people when you’re stuck at home is a blessing, rather than a curse, most of the time. So it’s especially problematic if social media is managing you, rather than the other way around, during the covid19 pandemic.

The Attitude of Gratitude

I do believe that gratitude is a potent antidote to the negative self-comparisons that we all make, especially when illness takes away careers, mobility, friends and life roles.

Re-focusing instead on moments of connection, natural beauty around us, or having the basics of life, which we take for granted and are absent in so many parts of the world, does make life better.  Research shows that cultivating thankfulness improves sleep patterns, benefits the immune system, deepens relationships, increases compassion, and generally improves quality of life.

But gratitude shouldn’t become another standard by which you judge yourself for succeeding or failing, or whether you have cultivated “enough” thankfulness yet. Especially right now, when our lives have been uprooted by a global pandemic.

Social media already makes us more prone to negative self-comparisons. In the era of coronavirus, images of other people’s joyful family activities, freshly baked bread, fitness achievements or motivational quotes, which are intended to be inspiring, can have the opposite effect. I feel guilty for feeling negative about positivity posts. You wonder “why aren’t I living my best pandemic life right now?” But social media can create emotional pressure that backfires, and #Motivational Monday becomes #UnmotivatedAllDay.

Remember that we can have two feelings at the same time. We can feel grateful for the sacrifices made by front-line workers, for having a roof over our heads and food on the table, and for not getting covid-19, but at the same time, also feel overwhelmed, isolated or frustrated.

I think a helpful rule of thumb, when you’re posting on social media, is to pause and reflect for a moment about whether a post could seem judgemental or preachy, or ask yourself if it portrays an idealized “perfect pandemic life.” For example, I’ve seen celebrities who say that while quarantining together they are grateful because “my husband and I haven’t even had one fight yet” or “we’re creating our favourite memories yet!” Instead, I think it’s better to balance the silver linings of the coronavirus pandemic – like reconnecting with family members – with emotional honesty about the difficulties you’re facing too. One therapist writes:

“Other popular social media posts these days encourage people stuck inside to emulate Shakespeare or Isaac Newton. According to these posts, Shakespeare wrote King Lear during a pandemic lockdown, while Newton invented calculus. These suggestions are often not very helpful.… We need to make sure we don’t push what is working for us on others. We need to use empathy more than ever right now ” (CBC).

Too Much News is Bad News: Headline Stress Disorder

Unfortunately, 2020  seem to be victim to the Chinese proverbial curse: “May you live in interesting times.” And, limiting screen time isn’t always enough to overcome the stress of negative news. Eventually, you have to check the news feed, even just to stay informed about public health updates, coronavirus lockdown restrictions, and reopening policies. This is especially important for those of us with chronic illness, who could be severely affected by coronavirus, triggering pain and exhaustion. Not only that, but knowing how and when you can get the medical care you need for your usual illnesses is vital for managing your health.

Have you heard of “Headline Stress Disorder”? Me neither, until I did some research into stress caused by reading news about social suffering. You don’t need to personally have been infected with coronavirus, or know someone who has, to feel anxious, worried or sad about how it is affecting people all over the world. It’s an unhealthy form of individualism that says “but you don’t even know those people, so why should you care?”

Headline stress occurs when “repeated media exposure to community crises [leads] to increased anxiety and heightened stress responses that can cause harmful downstream health effects, including symptoms that are similar to post-traumatic stress disorder” (Everyday Health). The constant stream of alarming news repeatedly triggers your fight-or-flight response, and the release of the stress hormone cortisol.

Media Diet: How to Navigate Social Media During Stressful Times

I found that a ‘media diet’ has helped to prevent information overload. Social media tends to be a more overwhelming place to get your news from (never mind a source of misinformation), compared to tuning in once a day to a morning news update or nightly news breakdown from a trustworthy news site. A longer format like in-depth podcast or investigative article can be less triggering than scrolling through multiple headlines and the resulting (often justifiable) outrage. Looking for good news, and stories of communities coming together, can also act as a counterweight to the negative stories.

We can be more intentional about how we use social media during this time. For example, you can join in Twitter chats or search by hashtag, such as #fibromyalgia or #spoonie, and scroll through posts on that specific topic – thereby avoiding news or pandemic-based posts. This can be a good way to maintain contact with online friends, which is often an important source of connection for people with isolating illnesses, while also preventing headline stress.

Ultimately, being self-aware while using social media is the best way to know when it’s time to sign out. It’s okay to give yourself some extra self-care after reading or hearing something upsetting in the news. We aren’t meant to be robots, and there is no right way to handle a pandemic. Sometimes just acknowledging your anxiety or stress and getting some fresh air or having a cup of tea can help you to process headline stress. There’s no stigma about talking to a therapist if you need additional support during this time.

Unfortunately, 2020  seem to be victim to the Chinese proverbial curse: "May you live in interesting times."

Colino, Stacey, (April 23 2020). Everyday Health. The News Dilemma: How to Avoid TMI During a Global Pandemic

Moss, Jennifer, (April 18 2020). CBC. Feeling ungrateful or demotivated during COVID-19? Don’t feel guilty.