Fibromyalgia as an Autoimmune Disorder: The New Study Changing Everything We Thought We Knew

The Evidence: Fibromyalgia may be an autoimmune condition

In a paradigm shifting new study, researchers were able to trigger fibromyalgia symptoms in healthy mice by injecting them with blood from fibromyalgia patients. Specifically, scientists injected the mice with IgG antibodies from individuals with fibromyalgia in England and Sweden.

IgG antibodies (immunoglobulin G) are immune proteins that attach to foreign substances so the immune system can neutralize them. IgG antibodies recognize and target pathogens and toxins. Sometimes rogue IgGs, called autoantibodies, turn against our own bodies, and are directed against our own tissues, like joints or organs, which is what characterizes autoimmune disorders.

When IgG antibodies from fibromyalgia patients were injected into healthy mice, the mice developed fibromyalgia-like symptoms, such as an increased reaction to pain, less physical activity, and reduced muscular strength. After two weeks, once the IgG injections wore off, the fibromyalgia symptoms experienced by the mice reversed. In contrast, IgG injections from healthy people into mice did not cause any symptoms. Importantly, injecting mice with blood from fibromyalgia patients that had been filtered free of IgG antibodies also had no effect on pain sensitivity in the mice.

From these results, the researchers concluded that “fibromyalgia pain is caused by IgG autoantibodies,” and is likely an autoimmune condition. This is a profound change in how we understand and treat fibromyalgia.

But how do IgG antibodies trigger fibromyalgia pain?

 The answer lies in where fibromyalgia IgGs appeared to target their activity in the body – the nervous system. Researchers examined tissues from the mice that had been injected, and detected fibromyalgia IgGs in specific nervous system cells that affect sensory nerves. In order to understand these findings, let’s define a few areas of the body:

Sensory neurons are nerve cells that carry information about sensations, like temperature, pressure, or pain.

Glial cells support, protect and take care of nerve cells by providing structural support, insulation, and nutrients, as well as modifying nerve signaling.

A dorsal root ganglion is a cluster of neurons around the root of a spinal nerve, just outside of the spinal cord. The cluster includes sensory neurons carrying information from the body to the spinal cord. Glial cells in the cluster form a layer around the cell bodies of these sensory neurons.

In this study, the researchers primarily discovered fibromyalgia IgG antibodies in glial cells of the dorsal root ganglia (the support cells in the cluster of sensory neruon cell bodies).

This finding means that fibromyalgia IgGs target glial cells that support and regulate sensory nerves, sensitizing them to pain signals. In other words, the immune system has gone haywire, and IgG antibodies are being directed against sensory nerve structures carrying pain signals. Hyperactive sensory nerves send more intense and frequent signals communicating the presence of pain.

But this isn’t the first time a discovery like this has been made. “Autoimmune pain” is a new term that describes how specific IgG antibodies can target different nerve structures, causing sensory nerves to become hyper-sensitive to pain and other sensations. But autoimmune pain has never previously been linked to fibromyalgia.

Putting this all together, fibromyalgia may be an autoimmune condition in which specific IgG antibodies target glial cells in dorsal root ganglia, causing the sensory neurons supported by the glial cells to become hypersensitive to pain.

How will this discovery change future research and treatments for fibromyalgia?

As a disorder of the immune system, a number of new treatments will open up for fibromyalgia that have previously been used for other autoimmune conditions. As we saw in the mouse study, the depletion of fibromyalgia IgG antibodies (once the human IgG injection stopped) reversed fibromyalgia symptoms. Theoretically, treatments currently used for autoimmune conditions like myasthenia gravis, which filter out the amount of IgG antibodies circulating in your bloodstream, could reduce fibromyalgia symptoms! “Plasma exchange is a dialysis-like procedure that is performed on a patient’s vein. An individual is hooked up to a machine that nearly simultaneously removes the blood and puts it back in. The machine “skims” the blood of harmful antibodies. Removing the antibodies prevents them from causing muscle weakness.”

 It’s important to remember that this study was conducted on mice, not humans, so much more needs to be done before we can understand or treat fibromyalgia as an autoimmune condition.

Autoimmune pain explains why fibromyalgia is a pain condition without inflammation, because the immune system (IgGs) directly targets the nervous system. The absence of inflammation, a hallmark of most injuries, and pain conditions like arthritis, has historically been used to suggest fibromyalgia is “all in your head” or “psychosomatic.” Studies like this one will hopefully be the nail in the coffin of the doubts about the physical pathology of fibromyalgia – it’s “all in the body!”

Critically, no fibromyalgia IgG was discovered in the brain or spinal cord (brain and spinal cord)  tissues of the affected mice, demonstrating that the fibromyalgia pain was caused by the sensitization of sensory neurons in the body.

Previous research has shown substantial alterations in central nervous system activity in people with fibromyalgia compared with healthy individuals. The researchers suggested that the hyper-sensitization of sensory nerves in the dorsal root ganglia, which are located just outside of the spinal cord, could alter nervous system activity in the spinal cord, thereby causing the patterns of central nervous system characteristic of fibromyalgia. However, further research needs to clarify the body vs. brain debate over the mechanisms of fibromyalgia pain processing dysfunction.

Goebel A, Krock E, Gentry C, Israel MR, Jurczak A, Urbina CM, Sandor K, Vastani N, Maurer M, Cuhadar U, Sensi S, Nomura Y, Menezes J, Baharpoor A, Brieskorn L, Sandström A, Tour J, Kadetoff D, Haglund L, Kosek E, Bevan S, Svensson CI, Andersson DA. Passive transfer of fibromyalgia symptoms from patients to mice. J Clin Invest. 2021 Jul 1;131(13):e144201. doi: 10.1172/JCI144201. PMID: 34196305; PMCID: PMC8245181.

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. 

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 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)

Collective Chronic Wisdom: My 5 Favorite Spring Posts by Chronic Illness Bloggers on Finding Hope During Difficult Days

 

Collective Chronic Wisdon

The world seems upside down at the moment, and the headlines are truly overwhelming, full of the pain and suffering experienced by so many as a result of the pandemic and systemic racism in the criminal justice system. Yet daily life goes on, and we still need to care for our bodies and our minds, while managing chronic illness in the time of covid-19.  I feel exhausted and stressed, and have been recently neglecting self-care and it’s deeper companion, self-compassion. So I decided to turn to the collective wisdom of my fellow chronic illness bloggers. I’m sharing a few of my favourite recent posts on the realities of daily life with chronic conditions during times of uncertainty, and helpful perspectives on how to find beauty and hope during difficult days.

Not Just Tired

More Than Just a Hashtag

For the past year, I’ve really enjoyed participating in the #joyinspring photography hashtag started by @Not_Just_Tired on twitter. I really enjoy sharing photos of gorgeous spring blooms, and learning what kind they are, by posting using the hashtag. Looking at the lovely images posted by others is always a pleasure, especially when so much of social media is full of difficult and painful news. It’s encouraged me to be mindful on my walks, and to really savour the beauty around me – basically, to stop and smell the roses (#sorrynotsorry). Here, she shares the impact of creating this hashtag, as well as her daily gratitude #mydailythankyou posts.

Blatherings with Terry

Finding Calm During Times of Uneasiness

We may not be in control of what happens outside of our quarantined zones, we can control our thoughts and how we cope. We can choose calm over chaos and fear…These seven-ish behaviors, practices, factors in my life, absolutely help keep me together. Well, quasi together. Ok, as “together” as I’m probably going to be! (lol + acceptance of my here and now)

My Medical Musings

Living A “Simply Special” Life, Despite Chronic Illness, Despite COVID-19

Instead of fighting to hold onto my old life, I’m using my limited energy, my talents and anything I can muster, to carve a new manageable lifestyle. It’s unique to my needs but it’s perfectly formed.

My failing body can dictate a lot in terms of limiting physical activities but it doesn’t have to dictate my happiness.

Brain Lesion and Me

A Not So Very Normal Life:

When living with a chronic illness, the unusual and disabling symptoms that we experience slowly becomes the norm and part of our daily lives. Life with chronic illness becomes the new normal. Often, it becomes such a part of every day that we can no longer remember life before illness suddenly entered our lives. Nor can we remember what it was not to endure such unyielding and debilitating symptoms.

The Winding Willows

The Key to Happiness Can Be Found in the Dirt

Have you ever planted a seed and watched in germinate then grow and bloom into a beautiful plant? Because there is so much hope for the future when you’re watching the transformative process of a plant growing.

I’ve been growing veggie seedlings in the past few weeks, and seeing the bright green sprouts grow after nurturing them with the best sunlight window positioning, carefully chosen seed starting potting soil, a watering regimen, and too much research has been incredibly rewarding. Especially since the entire world seems upside down.

 

Strength of Surviving: The Importance of Acknowledging Your Own Strength in the Face of Chronic Illness Adversity

Getting through adversity with endurance and determination is a trademark characteristic of every single person living with chronic illness. This is the strength of survivors. The coronavirus pandemic especially hard on those of us who are sick already but I hold on to the fact each of us is stronger and more resilient than we give our selves credit for, and these inner resources will help carry us through this time.But to acknowledge you own strength, you have to know what it really means. Think about it… what does it actually mean to be strong?

What is strength?

Strength is often described in terms of a fight for control – pictured as a physically tough warrior doing battle against the forces of opposition (Kabat-Zinn). In terms of life with chronic illness, being a fighting warrior can mean advocating for better care from your doctors or standing up for yourself to maintain boundaries in a challenging relationship. “I have the inner strength to fight for what I need.” But this metaphor is relatively limited in how it lets us conceptualize our own strength.Strength can also be understood as having the internal resources to cope in difficult situations. A strong person might be described as having the capacity to exercise physical, mental or moral power in challenging circumstances. You might have a strong mind, a strong support network, strong principles, or strong abilities that help you navigate through life experiences. Learning to cultivate and rely on these resources is an aspect of strength that I would call resilience, and it’s an important part of living a better life with chronic illness.Finally, and I think most importantly for individuals with illness, strength is about endurance, tenacity and perseverance – think of the phrase “a pillar of strength”. This is the strength of survivors. Getting through adversity with endurance and determination is a trademark characteristic of every single person living with chronic illness. I love the phrase “remember, your success rate for surviving your worst days so far is 100%”.Jon Kabat-Zinn, a pioneer of mindfulness in medicine, created a meditation based on the visual metaphor of a mountain to help patients in his programs learn how to adopt a mountain’s qualities of strength, stillness and stability as their own. I would include an additional symbol – a tree –which offers additional insights on how we can understand strength as adaptability in a way that helps us cope with chronic illness. What can the metaphors of a mountain and a tree can teach us about the strength of survivors? How can we come to know our own grounded presence, our ability to encounter both good and bad experiences one day at a time, and our own will to survive, uplifted from deep within?

Being Grounded

The base of a mountain is embedded in the Earth’s crust, and the deepest roots of a tree ground it in the soil. In the same way, we can anchor ourselves in the present moment, and root our attention in the here-and-now. This is what it means to be “grounded in awareness”, which is a stable foundation for living that can be very reassuring in the face of overwhelming circumstances.Growing deep roots in the firmament of awareness is a source of great inner strength. If we stay mindfully connected to the present, then we don’t get swept away by memories, imaginings, and other mental or emotional preoccupations. Whenever grief over losses caused by illness arises – or frustration about physical limitations, or anger over inadequate health care – staying grounded in the present, even as you feel your feelings, provides stability, continuity and reliability. You can always count on just this breath, moment to moment, to anchor you. It is sustaining and nourishing for our well-being to be grounded in the present in this way – just like it is nourishing for a tree when its roots absorb water and nutrients from the surrounding soil.Meditation instructors often liken thoughts, feelings, and experiences to the weather. How would you describe the forecast in your own life today? Sunshine and blue sky (happy), overcast (low mood), partly cloudy with sunny breaks (neutral), storm clouds with thunder and lightning (anger), blizzard conditions (turmoil) – using the emotions-as-weather metaphor is a wonderful way to check in with yourself to identify how you’re doing throughout the day. Jon Kabat-Zinn explains that the mountain experiences these conditions on its surface – but underneath, the solid base sits in unwavering stillness. In the same way, beneath the thoughts, emotions and experiences of our daily lives, is the foundation of unwavering stillness that is our awareness. If we can learn to sit mindfully, grounded in the same resolve and endurance as a mountain, no matter what the conditions on the surface landscape of our daily lives might be, we can adopt its strength as our strength.

Being Mode: Equanimity as Strength

A mountain is the quintessential symbol of endurance. The mountain rests in “being mode”– a calm, abiding presence withstanding the inevitability of change over time. A mountain knows at its core, of each experience, that “this too shall pass”. The mountain represents equanimity.Everyday life with illness is extremely unpredictable. Chronic illness exemplifies the saying “man plans, and God laughs.” Physical symptoms constantly fluctuate, which makes planning very difficult. Over time, forced periods of inactivity and rest due to flare-ups make it difficult to continue persevering at things – from friendships, to jobs, or projects. The stop-and-go nature of life with sickness makes it hard to accomplish things or to cultivate relationships, and the constant sense of uncertainty causes a pervasive feeling of powerlessness.The natural reaction to these changeable circumstances is to double down on “doing mode”. For example, you might stay up all night researching your illness, create a 40 item treatment plan, or drive yourself to “push through” tasks regardless of pain or exhaustion, in order to be more productive. “Pushing through” does require strength, but it is the fighting, warrior-type of strength we discussed earlier. This works in short bursts, and can sometimes be necessary, such as pushing through physical discomfort to attend a meaningful family event or to advocate for yourself with a dismissive doctor.But like clenching a handful of sand in a closed fist, these tactics don’t help you hold on to predictability or productivity for very long. We can needlessly expend our limited energy in a constant, exhausting battle to regain control of our day. But, as you likely know all too well, pushing through today usually only leads to a crash tomorrow. What might happen if we switched to approaching life’s challenges using the endurance and tenacity of “being mode” rather than engaging in the battle of “doing mode”?We can use the symbol of the mountain to represent what embodying equanimity as an inner strength could look like. When difficult experiences, thoughts or emotions arise, rather than always seeking to analyze and control these circumstances, we can rely on our inner awareness as a solid foundation – building on the enduring resolve and unwavering stillness of mindful presence to persevere through the storms of life. Releasing the need to control our life circumstances can feel like an enormous weight lifted from our shoulders. Instead, we allow circumstances to be like the weather on the mountain – ever-changing – even while the mountain endures as a still, rock-solid presence. In this way, cultivating equanimity allows us to build inner strength.

Strength in Flexibility

Like a tree, you have shown determination to survive, no matter how challenging the environment has been. You have endured, one day at a time. This inner strength comes from your core, which supports you like the trunk supports a tree.The tree has a powerful lesson about strength to teach us – because it is both strong and flexible. The trunk stands firm, yet the branches bend in the wind. If the wood of trees was unyielding, all trees would be brittle and snap in stormy weather. In fact, the trees that have adapted to survive hurricanes are the most flexible of all – picture a palm tree bending to withstand the onslaught of Category 5 hurricane strength winds one day – and then standing serenely under a tropical sun the next. Flexibility, and adaptability, in the face of adversity, increases resilience. No matter whether we face sunny days or storms, the tree teaches us to stay grounded in the present, to hold ourselves upright using our inner strength, and to be flexible in the face of the winds of change.

When I realized all of the strength I needed was already inside me, it changed how I approached the challenges of illness. Of course I feel anxious and worried; the feelings don’t disappear. But reminding myself to stop, breathe, and plant my feet in the present gives me hope that there is a path through whatever difficulties I face. I can deal with just.right.now. The stillness and stability of just being, of our awareness of each moment, is always there to count on, to ground yourself in. Endurance is made up of perseverance in moments, and days. I’ve gotten through every difficult minute, hour, day, and season I’ve ever faced, and so have you. I don’t know what the future holds, and I try to stay open to change. But I have an approach and a way to navigate what comes, and that is the strength of surviving. I know that now, and it makes all the difference.

to cope with You can find the mountain meditation in any Mindfulness Based Stress Reduction program, which is taught all over the world, in the book “Wherever You Go There You Are” by Jon Kabat-Zinn, or on the free, non-commercial site http://www.freemindfulness.org/download, under ‘Guided Imagery’.

Fear and Hope: The Hidden Realities of Being Chronically Ill In the Time of Coronavirus

 

Right now is especially hard on those of us who are sick already. The safety nets that each person has – medical care, social support, financial security, and access to basic necessities, among others – are being sorely tested at this time. But the individual safety nets of people with chronic illness are already weakened, and when you add a pandemic, they fray even more. We have to hope and pray that they hold.

Spring. It’s a beginning. More than that, it’s a beginning that starts in the cold and the dark. In the middle of winter, it’s hard to believe spring will come. But it does. I’ve taken photos of spring flowers to remind myself of that fact.  I hold on to the fact that the deep resilience and strength that everyone with a chronic illness has developed will help to get us through this time.

Physically, the risk of getting coronavirus has higher stakes for the chronically ill. Even if you are not immunocompromised, the fear of getting a terrible illness flare up, or setback is real. A cold virus once caused me debilitating fatigue for months, so of course I worry what coronavirus could do. My husband worries even more on my behalf than I do!

The financial crisis ahead will disproportionately hurt the chronically ill, who are far more likely to be underemployed or unemployed than the non-ill. I feel lucky my husband’s salary can support both of us, since I can’t work, although things in a single income family are often tight. But for years, many of those with chronic illness have lived in poverty on inadequate government disability assistance. Suddenly, the government has found the resources to give individuals who have just lost been laid off because of covid-19 as much as double the amount allocated for disability benefits. 

To be clear, I don’t begrudge anyone who has recently gotten emergency government financial assistance due to coronavirus. That’s the right thing for our governments to do, and in fact, they should give more than they are. But when the chronically ill and disabled get half as much on a regular basis – an amount that is below the poverty line- it feels like our governments are saying people like us are worth half as much. Meanwhile, many are still trying to get by on the inadequate amount given as disability assistance during the lockdown without any additional supplementation. 

We’re still living in an ableist world  in the time of coronavirus. There’s no way that I can stand in line for half an hour or longer to buy groceries or pick up prescription refills on my bad knee. But God help you if you want schedule grocery delivery. There are no times available, for love or money. My husband is able to try and shop around his work schedule, and I’m lucky to have that help, when others are on their own. In some cases, neighbours and strangers have stepped up to help out the chronically ill who iive alone, and that increases my faith in humanity a little bit more.

Like so many, all of my appointments and procedures have been cancelled. From monthly physiotherapy that helps to bring down regular flare ups, to a long scheduled nerve ablation that is supposed to reduce my neuropathic back pain, all of these pain management tools are now on hold and I’m trying to make do the best I can.

I won’t lie, it has been harder to sleep, which triggers more flares of pain. I feel more irritable, especially if I spend too much time on the news or social media. Regulating my news diet helps to bring some of the stress down. It’s just not feasible to try to worry about every corner of the world at once!

At the moment, it seems like everyone and their grandmother are having Zoom chats with all the people they’ve ever known. If I read one more post about how wonderful all this reconnecting is I think I will get an eye twitch.

Chronic illness is isolating for most of us. When you cannot regularly meet up with friends or join community events or chit chat with neighbours at the dog park, then your social support system shrinks. I’m fortunate to have a couple of good, old friends who have stuck with me. And since I’m old school, I skype with them on occasion (sorry, zoom!).

But I’ve lost a lot of friends and family members along the way. It’s hard to think about the people who were more fair weather friends at a time like this when we could have been there for each other.

That being said, I’ve learned to embrace solitude more over the years. This is the time for distraction therapy: writing, knitting, painting or whatever creative pursuits you have wanted to try. Or maybe just appreciate the creativity of authors, actors and musicians by reading, watching shows and listening to music that you’ve wanted to check out but haven’t had time until now. Here’s a list of my favourite free distractions to help you make the most of this time, despite the pain and fatigue.

Frustratingly, I had just started going to a local library book club before the pandemic hit and had found a new local fibro group I was hoping to go to. Looking forward to book club got me through some difficult days- thinking, “well, at least I’m living a little”. Same with going out to a cafe once in awhile with an audiobook, ted talk or an online course lecture. Those small things helped me to regulate my feelings about chronic pain- counterweights of connection and enjoyment to the isolation and limitations of illness.

Now though, that’s not possible, or re-creatable. When bad days hit now, it’s hard to know what to turn to other than a lot of distraction. Fortunately, there are some excellent online support groups, like Medical Musings for Friends on Facebook, or the general chatter of #chroniclife #spoonie #chronicpain #fibromyalgia on Twitter.

I hold on to the hope that this season will pass and a new spring will bloom, when we will be able to access the treatments and supports we need again, and build the relationships we want. Now more than ever, I value the strength I’ve gained, my current relationships (IRL and virtual), and mindfulness of simple enjoyments, like spring flowers, that I can savour. I hope I can carry the intention to focus on these things into the next season, post-coronavirus. We have strength forged by surviving our illnesses, and we can trust in our own tenacity and resilience during this time. Self-compassion and kindness can also go a long way right now. We need to give ourselves a break at present, since we’re all just muddling along trying to figure this thing out the best we can, one day  at a time.

 

Distract Your Pain Away: How to Make the Most of Your Time at Home with Chronic Illness

Distract Your Pain Away:

Living with daily pain can feel very limiting. The list of activities I can no longer do without increasing my pain levels or triggering flare-ups, which includes working, typing, holding a book, vacuuming, running, painting, and everything in between, is longer than the list of what I can do.  It can feel like a cage that that I’m confined to.

In this situation, I found it liberating to discover new activities that I can do even while I am still in pain. In fact, distraction is a valid pain management tool. A recent study found that “mental distractions actually inhibit the response to incoming pain signals at the earliest stage of central pain processing” (Science Daily). In the study, participants either completed an easy or difficult memory task while painful heat was applied to their arms. Participants who completed the most difficult memory test, which was more mentally distracting, perceived less pain– a functional MRI scan of their spinal cord actually showed less nerve activity compared to the group doing the easy memory task. The researchers concluded that these results show “just how deeply mental processes can go in altering the experience of pain” (Science Daily).

This study shows the importance of finding low-key activities that you can enjoy even while you are in pain. Over the past few years, I have discovered a number of different activities that have helped me to expand my horizons, and manage my pain using distraction. I hope that you find some of these (free!) suggestions useful for making the most of your time, even if you are in pain.

Tune Out

Music is a powerful tool for managing pain and depression. Researchers recently found that listening to music for an hour a day reduced chronic pain by up to 21% and depression by 25%! (Science Daily, Listening to Music). Importantly, participants in the study reported feeling more in control of their condition and less disabled by it.

Personally, when I am feeling more alert I listen to my favourite albums and when I’m feeling fatigued, I relax to music specifically designed to help people fall asleep (I simply search for ‘deep sleep music’ in YouTube). If you want to discover new artists, or enjoy music without the cost of buying new albums, you might want to try free music streaming apps and websites, like the free Spotify plan, Google Play Radio or iTunes Radio. These sites let you legally listen to music without a paid subscription. I also like Jango, which has custom radio stations you can stream based on artists that you like (and promises only one audio ad per day).

Learn Something New

Can we be honest about something for a minute? I’m a complete nerd. But I’ve also discovered that most people have at least one topic that makes them geek out! Learning is good for brain health and it can also boost feelings of well-being and self-esteem.

There are many ways to learn new things from the comfort of your home. One of the most rewarding options that I have found is to watch free online video courses from sites like Open Learn, edX, Coursera. Whether you are interested in art or archaeology, math or music, there are thousands of options to explore. Sites like Open Culture provide listings that link to hundreds of courses so that you can choose what interests you most.

I recently discovered the world of podcasts, which has quickly become a staple activity that I turn to on high-pain days. The great part about audio is that you can lie down and rest in the most comfortable position you can find while you learn. The variety of podcasts out there is almost overwhelming, and there really is something for everyone, whether you are a news junkie, sports fanatic, gossip addict, policy wonk or anything else!

Transport Yourself to Another World

Who doesn’t love a good story? Nobody, that’s who! Books, TV shows and movies are all obvious forms of distraction for people living with chronic pain. While you probably already have thought of these options, I want to share a few tips from my own experience that may give you some new ideas to try.

Actually reading a book may be a challenge, depending on your chronic pain condition. Whether physically holding the book is painful, or reading the words on the page causes fatigue or headache, a paperback may not always be practical. Enter the amazing world of audiobooks! A great performance by a talented narrator can really bring a book to life. Lying down and getting carried away in a new story is one of the best low-key activities I have found.

Your local library may have an online audiobook library where you can temporarily download free audiobooks from a digital content service, without having to check them out from a local branch. LibriVoxi s a free, legal, online audiobook streaming service with hundreds of classic books (no longer copyrighted), read by volunteers. Audible and similar companies sell audiobooks from their large online libraries, which you can download or play using their app (but these subscriptions are pricey).

Binge-watching is a tried-and-true method for getting through a bad pain episode. Many people with chronic pain literally ‘Netflix and chill’! Unless you’ve been living under a rock, you already know about Netflix and all the other streaming services. However, like audiobooks, these services can get expensive. Did you know that there are a number of free (legal) streaming services like Popcornflix that offer public domain films (classics), independent and foreign films, and even recent features, as well as a number of documentaries?  Sites like Pluto TV also offer an array of live tv options. My public library has a partnership with Kanopy, which offers 8 free videos per month of everything from Great Courses lectures to Oscar nominated films. Your library may offer a similar service!

Resources

Science Daily (Pain relief through distraction: It’s not all in your head)

Science Daily (Listening To Music Can Reduce Chronic Pain And Depression By Up To A Quarter)