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Medical & Emotional Gaslighting: How to Identify This Damaging Manipulation And Heal From It For Good

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What is Gaslighting?

Gaslighting is a form of manipulation can happen at the doctor’s office, at home, at work, or anywhere else. In order to mess with your confidence, manipulaters play on shame, fear and guilt, until you question everything about yourself. If someone cursed at you, it would be very hurtful. But at least the comment would be knocking on the front door, introducing itself as an insult. Gaslighting, on the other hand, sneaks in through the backdoor. It’s pure manipulation. It’s also emotional abuse.

What is gaslighting?  Psychologists use the term “gaslighting” to refer to a specific type of manipulation. “Gaslighting is a technique that undermines a person’s perception of reality. When someone is gaslighting you, you may second-guess yourself, your memories, and your perceptions. After communicating with the person gaslighting you, you may be left feeling dazed and wondering if there is something wrong with you.”

Gaslighting Technique 1: Shaming

A primary tactic of gaslighting is to make you feel like your emotions and reactions are always somehow wrong. If you try to defend yourself, you are sensitive and/or dramatic. If you try to set boundaries, you are selfish and mean. If you don’t do what is asked of you quickly enough, you are lazy and incompetent. If you go out with friends you are too much of a people pleaser. If you don’t tough it out, you’re weak.

Similarly, this is the doctor telling you that the medical treatment doesn’t work because you’re too emotional, or calling you a head case. Medical gaslighting — “the repeated denial of someone’s reality in an attempt to invalidate or dismiss them — is a form of emotional abuse. When a medical professional leads a person to question their sanity, this can be just as traumatic and abusive.”

Women are often told their severe pain is just “normal period pain,” a weight problem, or something a Tylenol will fix. “Research cited in the Journal of Law, Medicine & Ethics in 2001, for example, indicated that women… are significantly more likely than men to be “undertreated” for pain by doctors.” Medical gaslighting occurs because pain is often dismissed as “all in your head” (being crazy) and caused solely by psychological problems, despite evidence to the contrary. However, it’s clear that stress and mental health challenges can exacerbate pain, which makes it important to address sources of toxic energy in your life, like manipulative behavior by your doctors or loved ones.

Gaslighting criticisms are usually arbitrary, with one thing being fine one week and a crime the next. You have a constant feeling of walking on eggshells, which makes you more vulnerable, and therefore easier to control. To illustrate with an example, when, as a 16 year old, when I sat crying after my grandmother’s death, the gaslight-er said “Are you being melodramatic in order to get attention or something? It’s not like you were even that close her.” It’s so wrong to tell someone their grief is ‘melodrama’, to respond with dismissal instead of comfort. But it is also an insidious way to make the bereaved doubt their own feelings, and wonder if they are being ‘over the top’ and attention-seeking.

In another situation, I asked the manipulat-er for privacy to have a conversation with a visiting friend, devastated after a break-up. Unbeknownst to me, this was interpreted as a hateful request, and, next thing I knew, I found a typed story on my pillow about how I was the world’s meanest mean girl, conspiring with my heartbroken friend to exclude the manipulat-er!

In this loony-tune land you begin to question your initial reactions (“Hell no! I am not like that!). You get worn down until you wonder whether you really are all if these terrible things. Shame is a deep emotion that can be played on effectively.

Gaslighting Technique 2: Isolation and Rejection

Secondly, you have the ‘isolate’ and ‘reject’ manoeuvres. In a medical context, for example, I have had a doctor undermine all other medical advice I had received up till that point: “You can’t trust what that guy says.” And if you assert that the previous treatments were helpful? “That was just in your head.” You start to doubt yourself, the medical team around you, and even what your body is telling you.

In a personal context, the gaslighter tries to intervene in my other close relationships. When I was in my first serious romantic relationship, they insisted my new long-distance boyfriend- he didn’t really love me. When I planned to visit him, the gaslight-er insisted I shouldn’t go. In fact, they threatened, “if you do go, you will be flushing our relationship down the toilet forever.”

Creating doubts about the love of everyone else in your life keeps you dependent on this one person. Threatening abandonment if you don’t comply keeps you in line. A doctor might threaten to cut you off from essential treatments if you don’t endorse their diagnosis or approach. A specialist once told me “It’s fine if you want to question me, I will still allow your treatment to continue- for now.”

In childhood, a parallel would be to threaten a child that, if they don’t behave, they will be left behind alone in the park, and then turn and walk away from them. Fear is a crucial part of the gaslighting trifecta. After all, evolutionarily, being abandoned by your clan was an existential threat, and that’s still how it feels today. You’ll do almost anything to prevent that outcome.

Gaslighting Technique 3: Guilt Trip

I had an excruciating nerve block procedure done last summer. At one point, I was in so much pain that I cried out and said “This is too much.” The doctor stopped and said, “I’m not even doing anything right now. What do you want from me? I already got you everything you claimed you needed to be comfortable, the head rest, and the extra pillows.” Implication: you are being a difficult patient; your “needs” are over the top, and requests for help are crazy. No compassion, no communication. (TW- threats of suicide in paragraph below).

Having a loved one call you to say “I’m just letting you know that I’m going to kill myself, not that you would care” is an emotional gut punch. When this happened to me, I was initially overwhelmed with panic for the safety of this individual (in fact it triggered my very first panic attack). This is an extreme example, but it highlights very clearly the art of the guilt trip.  This person had cast themselves as a victim (driven to suicide), and myself as the perpetrator (by a heartless ice queen), when actually it was the other way around. I realized years later that my love for this individual had been weaponized against me.

A more humdrum example was getting “You didn’t load the dishwasher, so you must hate me’. Your initial reaction is to run towards this person to try and prove your loyalty and affection (“No, of course I love you! I’m so sorry, I’ll load the dishwasher right now!). Over time, you take it into your soul that you are cold-hearted, and unloving, since this is apparently how you make your loved ones feel. And that’s what they want, because now you are hooked by your own guilt and desire to try to secure the relationship. 

Healing From Gaslighting

The rational tools of relationship problem solving – compromise, taking cooling off time outs, or agreeing to disagree, just don’t work in this environment. Everything becomes twisted. You start a conversation about how communication needs to change and end up reassuring the other person that you do love them and will try to visit more. Facts are cross-examined: “Get your story straight!” Efforts to clarify are diverted by provocative or hurtful comments to bait you off course. Up is down and left is right. Every encounter will be subject to revisionist history, and there will be no ‘agree to disagree’.

Ultimately, you have to give up on coming to a shared understanding. Often, trying to win the argument and prove your point is futile. You have to believe in yourself first and foremost. So what can do if you think you are being gaslighted?

Be self-compassionate. Give yourself the love and security that you long for. In any situation, ask “what would I tell my best friend if they were in this position?” and then tell that to yourself. Practice loving kindness meditation.

You have the power to say you don’t want to continue a conversation, and get up to leave. You have the power to say no, to whatever is being asked of you. When you start to feel confused, or uncertain, it’s likely the gaslighting is underway. This is a good time to change the subject, say no, or just go.

It’s important to keep track of the patterns in these relationships. Keep a journal, voice notes, or tell a close friend. You may notice that gaslighting increases when you gain a little bit of independence or assert yourself. Since these episodes will be revised out of the official account kept by your gaslight-er, it’s very helpful to have your own record. This helps you stay firmly planted in reality and not get twisted around in future encounters.

Finally, talk to a therapist! It does wonders for your ability to see through manipulation and empower and protect yourself.

How To Respond To Gaslighting

When it comes to what you can say when you sense gaslighting, here are a few recommendations:

“I notice you don’t accept my viewpoint on this as being equally valid to yours. Please don’t dismiss my interpretation like that; I’m not imagining things.”

“You clearly feel strongly about this, as do I. My emotions are my emotions, and I don’t need to justify them.”

“I respect your right to have your own perspective. Please grant me the same. I think we need to agree to disagree on this.”

“We both deserve to be treated respectfully. Since that isn’t happening, I am going to take a break from this conversation.”

“I’m not going to respond to that.”

“Like I told you, I’m not going to discuss this topic again. I need to go.”

And then leave. Protect Your Heart. You deserve it.

A list of international emergency and suicide hotlines:https://www.opencounseling.com/suicide-hotlines

‘Psychology Not Pills’: The Truth Behind Recent Headlines Claiming That ‘Therapy Can Nix Chronic Pain’

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The health headlines were all abuzz this week about a new study on chronic pain out of Boulder, Colorado. The headline for the article I first read was: ‘How therapy, not pills, can nix chronic pain.‘ As a patient, and a health writer, I’m frustrated to read headlines that perpetuate a narrative that chronic pain is a psychological problem that is “all in the head.” However, I resolved to stay open to the conclusions drawn from the study.

What did the study actually say?

Pain Reprocessing Therapy (PRT) claims to shift your beliefs about the cause and threat value of chronic pain, by framing pain as a “false alarm” rather than something dangerous. By helping patients to reconceptualize their pain as a “reversible, brain-generated phenomenon,” not ongoing physical damage, the study authors concluded that PRT provides significant, durable pain relief.

A small sample of 151 individuals with low-moderate back pain were divided into three groups: a treatment group, a placebo group, and a group who received the “usual care” for back pain. The treatment group received eight one-hour sessions of a new type of therapy called Pain Reprocessing Therapy (PRT) over four-weeks. All three groups reported their pain levels at the end of the study. In addition, the researchers used fMRI imaging to determine if the therapy had changed brain activity in participants when they evoked back pain in the laboratory.

In the treatment group, 66% of participants reported being pain-free or nearly pain-free at the end of the study, compared to 20% of participants in the placebo group, and 10% in the usual care group. Even one year later, fMRI imaging showed that participants in the treatment group had a lower prefrontal cortex response to evoked back pain than the other two groups, although the meaning of this finding was unclear.

What does this study not say?

The study proves that, in a small sample of people with mild back pain, PRT reduced pain. It opens the door to further investigation on how pain perceptions held by individuals with low back pain affect pain intensity, and how learning to reappraise pain sensations as safe may help reduce pain levels. However, this is a far cry from the ‘revolution in how we understand and treat all forms of chronic pain’ that articles reporting on the study proclaim! We would need a sample size of thousands, in different settings, to confirm the findings that PRT can reduce mild low back pain. Furthermore, it is impossible to draw conclusions about how PRT would work for people with different pain conditions, like fibromyalgia, until a study is repeated in those populations.

Psychology and Pain

In some cases, chronic pain is a disorder of the pain processing system itself: sensitized nerve endings send pain signals, which are prioritized and amplified in the spinal cord, and finally interpreted as a significant, dangerous threat in the brain. Rather than “all in the head”, we can consider this type of pain to be “all in the brain and central nervous system” (far less catchy, I’m afraid). This is in contrast to conditions like arthritis, which are caused by inflammation in physical tissues like joints.

To my knowledge, no research exists showing a mechanism of action for how thoughts and emotions of the mind can control or terminate central nervous system neurons firing pain signals. The authors of this PRT study argue that other psychological pain interventions, like cognitive behavioural therapy or mindfulness, teach patients to improve their daily functioning despite pain, by learning to be less reactive to pain signals. In contrast, Pain Reprocessing Therapy, apparently teaches conscious strategies to reduce and down-regulate pain signals directly. This study shows a correlation (PRT correlates with pain reduction), and the brain imaging results were inconclusive. That is a far cry from proof of the researchers’ theory about how PRT works, showing  direct causal evidence that RPT dials down pain signals.

There are limitations to the role the brain plays in perpetuating chronic pain. For example, fibromyalgia, was, up until recently, thought to have been 100% caused by central nervous system sensitization. However, now a new body research shows fibromyalgia is also a disease of the body, including small fiber neuropathy, and immune dysregulation. Therefore, I think the claim that pain is an entirely “reversible brain-generated phenomenon” is a stretch too far.

In the past, claims that pain conditions were psychological in origin were used to discredit and disbelieve patients, particularly women.  Even though the “all in your head” narrative has been weaponized to discredit pain patients, we have to stay open to the possibility that PRT may be one tool, among many, in a chronic pain management toolkit. None of these treatments, like psychology or medication, need to be ‘either/or’. Responsible health writing plays a role in shaping these narratives.

The health headline for a medical news website stated ‘Psychology, not Pills Provide Long-lasting Pain Relief’, setting it up as one or the other, whereas the research article had the much tamer name `Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial` (albeit, in a psychiatry journal). As someone with a health condition, it’s important to notice the bias in reporting, and how that shapes the headline and article. For example, I found a reasonable headline reporting on the PRT study which says “Chronic pain treatment should include psychological interventions.” For tips on how to find credible health information, and avoid misinformation and conflicts of interest, these are some helpful tips.

Ashar YK, Gordon A, Schubiner H, et al. Effect of Pain Reprocessing Therapy vs Placebo and Usual Care for Patients With Chronic Back Pain: A Randomized Clinical Trial. JAMA Psychiatry. Published online September 29, 2021. doi:10.1001/jamapsychiatry.2021.2669

Full-Spectrum Effect: New Study Shows Cannabis Terpenes Provide Pain Relief Alongside THC

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A new study shows that terpenes, which cause that skunky cannabis smell, might be good for pain relief. The pungent smell and taste of cannabis is caused by aromatic compounds called terpenes (essential oils are also rich in terpenes, which causes their unique scents). Terpenes are distinct from cannabinoid compounds like THC or CBD. Researchers at the University of Arizona Health Sciences studied the pain relieving effect of 4 cannabis terpenes, used individually, and in combination with a synthetic cannabinoid agonist, which stimulates the body’s natural cannabinoid receptors.

This study found that when the terpenes were given along with the synthetic cannabinoid agonist, they amplified its pain relieving effect. Scientists were interested in the hypothesis of an entourage effect, which suggests that terpenes work synergistically with cannabinoids like THC and CBD to boost the pain relieving efficacy of cannabis. Cannabinoids bind to cannabinoid receptors, which stimulate nerve signals, that in turn trigger physiological changes, including dialing down pain sensitivity.

Interestingly, when the terpenes were isolated and given individually, they mimicked the effect of cannabinoids! All four terpenes activated cannabinoid receptors, which usually bind to THC. In fact, other plant compounds have been found to act on cannabinoid receptors, and these compounds are said to be cannabimimetic. “Cannabimimetic [compounds], can… play a role in immune-mediated inflammatory and infectious diseases, neuroinflammatory, neurological, and neurodegenerative diseases, as well as in cancer, and autoimmunity.”**

This recent study adds support to the entourage effect theory. It builds on previous research, which has has shown that terpenes also have anti-inflammatory properties. If you use cannabis for pain, look for “full spectrum” extracts, oils, edibles or vape cartridges because these include terpenes. Sometimes terpenes are removed from extracts to eliminate the skunky aroma/taste. Of course, if you smoke or use a vaporizer, the original bud is naturally full-spectrum.

Reference:

LaVigne, J.E., et al. (2021) Cannabis sativa terpenes are cannabimimetic and selectively enhance cannabinoid activity. Scientific Reports.

*https://www.news-medical.net/amp/news/20210714/Research-finds-Cannabis-terpenes-as-a-promising-new-target-for-pain-therapies.aspx

**https://doi.org/10.3390/molecules25071567

What I Wish I’d Known About Flares and Hormones: How Tracking Your Period Can Reduce Pain, Strains, and Injuries

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Muscle and joint pain are a debilitating part of chronic illnesses like fibromyalgia, arthritis, and M.E., among others. Ridiculously ordinary activities can trigger muscle and joint strains and injuries in people with chronic illness, but have no effect on healthy individuals. I recently went to physiotherapy with neck and upper back pain. I could feel the ropey muscle spasm and trigger knots causing the pain, which just wasn’t resolving. My physiotherapist asked whether I had been taking any hormones, and I was surprised by the question, because it just so happened that I was. I decided to do some research, and what I found frustrated me. How was it that after years of seeing doctors and researching online, no one had explained the connection between the menstrual cycle and muscular pain to me? This is the beginning of a series on hormones and flare ups that I hope will make this information, buried in scientific journals, more widely available.

We know that, in general, women experience significantly more pain and injury than men, particularly mid-menstrual cycle, around the time of ovulation, when estrogen is high. One study found that the risk of muscle and tendon injury in women athletes is almost twice as high around ovulation than at other times in the menstrual cycle.[1] These injuries included “muscle ruptures, tears, strains, and cramps, as well as tendon injuries and ruptures.”[2] Other studies have shown that women experience more anterior (front) knee pain, ACL injuries (torn knee ligaments), and plantar fasciitis foot pain around ovulation.[3]

But why?

The surprising answer may lie in the impact of ovarian hormones like estrogen. During ovulation, when estrogen peaks, the elasticity of ligaments, tendons, and muscular tissue increases, heightening the risk of strain, pain, and injury.[4]

Estrogen & Your Monthly Cycle: Back to Health Class

Estrogen is a sex hormone most well-known for regulating the menstrual cycle, although it also has many other functions in the body too. Hormones enable communication between different parts of the body.  When hormones are released, they work like keys that fit into receptors on cells, activating or deactivating specific functions.

Let’s go back to high school health class. Your menstrual cycle begins on the first day of your period. Once your period is over, the ovaries begin to produce eggs in small sacs called follicles. The first part of your period, called the follicular phase, lasts about two weeks on average. Estrogen is released from your ovaries, and this stimulates the lining of the uterus to thicken. Estrogen peaks at the end of the follicular phase, triggering a process that results in ovulation, when one mature egg bursts through its follicle.

During the second half of your cycle, called the luteal phase, which lasts about two weeks, estrogen levels are much lower. If the egg does not become fertilized, then this eventually triggers the uterine lining to shed, which is the beginning of your next period, and the start of a new cycle.

The bottom line – estrogen rises during the first half of your cycle, peaking prior to ovulation, and then falls in the second half of your cycle.

Estrogen, Muscles And Connective Tissue

But estrogen also plays an important role in other parts of the body, including connective tissue like muscles, ligaments, fascia, and tendons. The latest research shows that there are estrogen receptors on these connective tissues.[5] Rising or falling estrogen levels communicate messages to these tissues, triggering changes in their form and function.

During ovulation, when estrogen peaks, the elasticity of ligaments, tendons, and muscular tissue increases.[6] This is also true in pregnancy, when the elasticity of your connective tissues increase in order to expand and make space for a growing fetus.[7] When the connective tissue becomes more elastic, it makes joints like the knee, SI joint, and ankle unstable, increasing the risk for injury.[8]

In contrast, when estrogen levels are low, immediately before and during your period (late luteal and early follicular phase), connective tissues become stiffer and more rigid. In turn, joints are stabilized, reducing the risk for injury. Researchers suggest that some biomechanical pain may improve when estrogen is low and connective tissues are less elastic, stabilizing joints .[9] Women who take the pill appear to have fewer injuries, and more consistent pain levels because their hormones do not fluctuate to the same degree.[10]

 Fascia, which is a network of connective tissue made mostly of collagen, encases muscles, organs, nerves, and blood vessels, holding them in place. We know that inflammation of the fascia surrounding muscle tissue may drive fibromyalgia pain,[11] and also, possibly, myofascial (muscle and fascial) pain in other chronic illnesses. Fascia also contains estrogen receptors.

When estrogen is high, the consistency of the fascial collagen changes, becoming more elastic, and stiffens when estrogen is low.[12] Researchers explain that “hormonal imbalance damages myfascial tissue, leading to drastic changes in its constitution in collagen and elastic fibers, and thus modifying its biomechanical properties.”[13]  In other words, hormone imbalances may play a role in chronic pain in muscles and connective tissue. It is possible that imbalances in hormones like estrogen may contribute to myofascial pain and injury in women with fibromyalgia and other illnesses. More research is needed to determine the effect of hormone imbalances on myofascial pain.

But even if you do not have a hormone imbalance, the increased elasticity of your muscles and connective tissues mid-cycle can increase your flares.

Track Your Period To Reduce Your Strains, Pains, and Injuries

Tracking your period may help you to understand how your cycle impacts flares of muscle and joint pain, strain, and injury. Over the course of several months, you may notice that your bad knee, low back ache, foot pain, wrist pain and other overuse strains, which chronic illness amplifies, cluster around ovulation. If true, avoiding significant activities around this time, or pacing yourself more, could help to reduce pain related to strains, overuse, hypermobility, poor posture, and injury (biomechanical pain)..

A few days after you ovulate may be the perfect time for a physiotherapy (physical therapy) appointment or massage, to treat ovultion related flares. Since knowledge is power, the more you can learn about which variables most affect your pain and strain levels can put you in the driver’s seat for managing more effectively. Tracking your period and ovulation might be the first step.

There are many period tracker apps that can help you to log your cycle. To work out the length of your menstrual cycle, record the first day you start bleeding (first day of your period). This is day 1. The last day of your cycle is the day before your next period begins. Pinpointing ovulation is a bit harder. If your average menstrual cycle is 28 days, you ovulate around day 14. But this varies significantly from woman to woman and even cycle to cycle.

You can use an ovulation calculator like this one to roughly figure out when you ovulate, which is usually 14 days before your period begins. Recording body changes, like temperature, that fluctuate through the month, can be used to predict ovulation. Or, you can purchase ovulation predictor kits at the drugstore that include urine test sticks to pinpoint ovulation. Learning more about your body and how it works is an empowering step women can take to manage their health.

Works Cited

Fede, C. e. (2019). Sensitivity of fasciae to sex hormone levels. PLoS One , 14 (9).

Liptan, G. e. (2010). Fascia: a missing link in our understanding of the pathology of fibromyalgia. Journal of Bodywork Movement Therapy , 14 (one), 3 – 12.

Marcus, J. (2021, April 5). How tracking your period can lower your injury risk. Retrieved April 20, 2021, from Runners World: https://www.runnersworld.com/health-injuries/a35994126/period-tracker-for-runners/

Petrofsky, J. (2016, April). Influence of estrogen on the plantar fascia. Retrieved April 24, 2021, from Lower Extremity Review: https://lermagazine.com/article/influence-of-estrogen-on-the-plantar-fascia#.YIb71wXgmGI.mailto

[1] (Marcus, 2021)

[2] (Marcus, 2021)

[3] (Petrofsky, 2016)

[4] (Fede, 2019) (Petrofsky, 2016)

[5] (Fede, 2019)

[6] (Fede, 2019) (Petrofsky, 2016)

[7] (Fede, 2019)

[8] (Petrofsky, 2016)

[9] (Fede, 2019)

[10] (Petrofsky, 2016)

[11] (Liptan, 2010)

[12] (Fede, 2019)

[13] (Fede, 2019, p. 8)

‘Twitchy Zombie’: An Incomplete List of the Many Varieties of Fibro Fatigue

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Fibro fatigue comes in different flavours. Like a wine taster, you become an expert at distinguishing all of the varieties of fatigue flavours. Who knew there were so many? Today, for example, I’m feeling like I pulled an all-nighter and had 5 shots of espresso. All I want to do is lie down and rest, but my body is practically vibrating, it’s so wired. I call it “Twitchy Zombie” fatigue.

Then there is the “Molasses Wader” fatigue flavour. You know, that feeling when every thought and every action feels like it requires the effort you would need to wade chest-deep in thick, syrupy mollasses? You can only function in slow-mo, but everyone else is zipping along on fast forward. Your brain just can’t keep up.

Other times, your brain slows, your breathing deepens, and you drift off to slee- Not so fast! Pain, like a rope tying your boat to the shore, keeps you tethered to wakefulness. You drift out to the outer reaches of consciousness, but can’t make it to dreamland. Often labelled painsomnia, I think of this as the “Hounds of Hell” fatigue flavour, where you are chained like a dog to your own wakeful pain hell-scape.

Another common fatigue is what I call “Nighttime Ninja.” You wake up and your body aches and you feel like you ran a marathon, then partied all night. Or, are secretly a night ninja. But definitely not like you slept restfully on a soft mattress under a cozy comforter.

What’s your fatigue flavour today?

#Fibro #ChronicPain #NEISvoid

How To Find Meaning Again When Chronic Pain Upends Your Life

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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. Why is something sustaining, nourishing, enjoyable? That’s what I had to ask myself in order to find meaning again. I came back to the saying, “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.

Before fibro, travelling was one of my favorite activities. 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? Can you broaden your horizons from home? Yes! By learning something new. On the traveling theme, free virtual live tours from local guides in English in Heygo are a lovely way to spend an hour. Time that feels spent on rewarding things makes it meaningful.

Learning via podcasts and audiobooks during my enforced rests turn a limitation into an adventure. I’ve found I enjoy 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.

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, which is what I believed at 20. But in learning to be mindful and still, I’ve found how much I missed before in my search for New Experiences, 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. 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 passive 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

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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

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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)

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

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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!)

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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