Tag: #chronicpain

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

‘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.

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

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

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

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

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

The Attitude of Gratitude

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

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

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

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

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

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

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

Too Much News is Bad News: Headline Stress Disorder

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

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

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

Media Diet: How to Navigate Social Media During Stressful Times

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

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

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

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

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

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

 

Say It Out Loud: Black, Chronically Ill, Disabled Lives Matter

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Copy of Collective Chronic Wisdon (1)

When I started this blog, the purpose was to share my illness journey. As a reader of  chronic illness blogs and social media accounts, I had found my own experiences validated and understood, and I wanted to pay that forward to others. I hope that readers here feel encouraged and supported to better navigate the challenges of living with illness, perhaps through finding a new perspective, or a practical strategy in one of my posts. I strive to balance a realistic look at the difficulties we face with the hope that it is possible to find greater wellbeing despite illness. But if I want everyone who finds their way here to feel that way, I have to be explicit about equality: Black lives matter. Indigenous lives matter. The lives of people of colour matter.

As a patient advocate, I have written about how ableism puts unfair barriers in place to prevent people with illnesses from participating fully in society. I have talked about how women are often disbelieved and dismissed by the medical establishment. But I have failed to write about how black people, indigenous people, and people of colour are at a greater risk of developing pain and illness, and undertreated for their conditions, compared to white people. And my silence is a message. Because, to not say anything when people are literally screaming for their lives is to say a lot.

On top of ableism and sexism, black women with illness face racism (women of colour, and indigenous women do too). This impacts their medical treatment:

“This study provides evidence that false beliefs about biological differences between blacks and whites continue to shape the way we perceive and treat black people—they are associated with racial disparities in pain assessment and treatment recommendations. Black Americans are systematically undertreated for pain relative to white Americans (Hoffman, 2016).”

In fact, the stress of experiencing racism can predispose black women to chronic disease. Professor Amani Allen at UC Berkeley says:

“Racial discrimination has many faces. It is not being able to hail a cab, getting poor service in stores and restaurants, being treated unfairly at work, being treated unfairly by police and law enforcement and being followed around in stores because of racial stereotypes. 

We found that experiencing racial discrimination repeatedly can create a state of biological imbalance that leaves certain groups of people more susceptible to chronic disease (Berkely News, 2016).”

I realize that I have to do better and ensure I include racism when I write about the barriers and challenges of accessing treatment and fully participating in society, otherwise I erase the experiences of black women as well as all women of colour who live with illness. I have to unlearn my own internalized racism and privilege.

At the end of the day, it’s more important to hear the words of women who are black, indigenous, and of colour than to hear my words on the subject. I’d like to point you to just a few of the many black bloggers and social media influencers you should follow who share their journeys living with illness and disability:

> @MsMoReal (Twitter) Free Spirit. Blogger. Lover of slurpees, trap music + the color orange. I have #myastheniagravis so I blog about that. #MGwarrior #spoonie #chronicillness  Blog is at ‘Is Was Will Be’ 

>@Imani_Barbarin (Twitter) she/her Black girl magic+disabled pride |MA Global Comms | my thoughts | #DisTheOscars + #AbledsAreWeird #ThingsDisabledPeopleKnow Blogs at Crutches and Spice 

>@ohheyteigh  (Twitter) who is the creator of @BlackDisability  and the Black Disability Collective on Facebook. @mnwfpc sweetheart #BlackDisabledLivesMatter

>@DawnMGibson  (Twitter) Founder of #BlerdChat + #SpoonieChat, #Paleo #GlutenFree #FoodSafety #Spondylitis #Arthritis

>@Tinu (Twitter) Founder #EverywhereAccessible. Black. Disabled. Writer. @HotMommasProj Fellow. #MySpoons #ChronicPain #cancer Typos? #BrainFog!

>@Keah_Maria  (Twitter) Writer/Author.Bi Icon. l created #disabledandcute

>@breenikki  (Twitter) Writer. Married. Mama. Believer. Beatface. Teacher. AutoImmune + Chronic Illness + Chronic Pain. A taker of Polonius’ advice to Laertes. Blogs at Cynical Ingenue

In addition, here are 9 Powerful Black Female Voices to follow who are educators, speakers, and activists that are facilitating important discussions on anti-racism, diversity, and inclusion to motivate people to change their beliefs and address issues of race and racism to resist and dismantle oppression.

Sources: 

Hoffman Kelly et al. Proc Natl Acad Sci U S A. 2016 Apr 19; 113(16): 4296–4301.

Berkely News (2018) https://news.berkeley.edu/2018/10/05/racial-discrimination-linked-to-higher-risk-of-chronic-illness-in-african-american-women/

 

Getting the Picture Across: Improve How You Talk About, and Think About, Chronic Pain Using Insights From Art Therapy

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Talking pain is hard (a number out of 10 doesn’t really say much!) Learn how to harness the power of images to communicate about your pain more effectively, to reduce pain through visualization strategies, and to express yourself emotionally and intuitively about the experience of living with pain using art therapy insights.

Getting the Picture Across: Let's Talk About How We Talk (and Think) About Chronic Pain

It‘s almost funny that the single word pain is supposed to mean all of the different sensations you feel when you live with a chronic pain condition. The numbering system out of 10 doesn’t capture chronic pain very well. Are we adding all the pains up and finding an average, or talking about one painful area at a time?. Beyond the intensity of pain, what about the quality of the pain? Often, I find it hard to describe in words how different ‘pains’ physically feel, especially to someone who does not have chronic pain. Sometimes a metaphorical image captures it best.

Images can elicit a very physical response, bypassing the analytical parts of your brain. If I describe the sensation of a dentist drill, whirring away, drilling a hole deep into my spinal column, how do you feel? In contrast, imagine I describe being in a forest, with sunshine streaming through the leaves and dappling the forest floor – do you feel more relaxed? That’s the power of our imagination to affect thoughts and feelings.

Visual Metaphors Can Improve Communication By Evoking Empathy Mirror Neurons

Visual metaphors are better able to evoke understanding and empathy in others than other means of communicating (G. D. Schott). If I tell you about a large needle being slowly inserted into my eyeball, your reaction is likely to cringe, grimace and/or squint your eyes.

When you hear someone describe an image of something happening to them, your brain will “mirror” that experience – you imagine what it would literally feel like for the same thing to happen to you. In fact, we have neural pathways, called mirror neurons, devoted to empathizing with other people this way: “both mirror neuron and alternative neural networks are likely to be enlisted in the empathetic response to images of pain” (G. D. Schott). Using visual metaphors can help you to describe your pain better to your doctors and your family and friends. Here are some common images and metaphors for chronic pain to consider using.

Nerve pain brings to mind intensity, heat and electricity. My sciatic pain can feel like a zap of electricity – a sudden, searing, mini-bolt of lightning. Pain is often compared to a burning or searing fire. Describing a sharp stabbing feeling, like a hot knife, can really help to get the picture of how your pain feels across.

Muscle pain might be best described as a tool-kit wielded by a sadistic handyman. The drilling in my head referred from spasmed neck muscles, the throbbing ache in my SI joint like a hammer pounding down on the spot. It’s also common to describe pain as a tormenting animal, clawing, tugging or squeezing the painful area of the body.

Deep, internal pain can feel like the pressure of a bowling ball, or worse, an anvil, suddenly teleported pressing down on the painful area. Some tools from the sadist’s toolkit might join the party, like pliers pinching or an ache that feels like a vice grip being tightened.

Take a deep breath after reading those descriptions. They can be stressful to contemplate, because it may bring to mind all the different pains you feel at once, and/or activate your mirror neurons so that you’re imagining many types of pain at once. Luckily, the power of visualization can be used not just to describe pain, but to reduce it as well.

Use The Power Of Your Imagination To Manage Your Pain

Visualizing can be a potent way to ease pain and shift attention. Imagining a soothing, or more positive mental picture can significantly lower levels of the stress hormone cortisol. When you enter a relaxed state, your brain releases endorphins, which are natural pain-relieving biochemicals. Using your imagination is a helpful way to distract from focusing on pain, which is likely another reason that visualization can help to manage pain. Numerous studies have demonstrated that guided imagery reduces pain and improve physical function.

Guided imagery often involves visualizing tranquil natural settings, like walking on the beach or in a garden. The visualization should incorporate all of your sense. For example, a beach visualization would include the mental image of a beach, but also the sound of the surf and the cry of seagulls, the smell of salt air, the feeling of sand under your feet – you get the idea. There are many websites, CDs and apps that provide sessions you can listen to if you’re interested in using this technique.

Another technique involves reframing your original visual pain metaphor or replacing it with a pain reduction visual metaphor. For example, if you feel like your pain sensation is like being pricked by hot needle, then you reframe visual to be a cold needle. After concentrating on that, you can imagine the needle itself becoming soft, like a string of spaghetti.

Guided visualization to soothe pain involves minimizing, distancing or numbing the pain sensation. You can imagine the warm oil being poured over tight muscles, for example, or ice freezing out burning sensations. The secret to success with any visualization technique is practice and repetition – it becomes more effective the more you do it.

A Picture Is Worth 1000 Words: Express Yourself Using Art Therapy

Envisioning pain can also go past physical sensations into describing how the pain impacts your life. If I was going to draw a picture of my fibromyalgia, it would be like a cage. I often feel trapped within limitations of what I’m able to do for the pain flares and I have to stop. Chronic pain can feel like an alarm that is always blaring – like trying to work through a fire drill. I would probably use colours like red and orange or grey and black to describe The ‘feel’ of pain.

Not surprisingly, exercises that get you to draw your pain/health condition are also helpful to relieve stress. “Expressing oneself through [art] makes our thoughts, feelings and ideas tangible and communicates what we sometimes cannot see through words alone” (Psychology Today). Creative expression is quite healing, even if it’s limited to abstract doodles or colourings. Drawings and collages can also picture positive images that evoke well-being.

What is a visual metaphor for your pain? If you had to draw an image of your chronic pain condition, what would it look like?

Resources

Psychology Today (Picture Of Health: An Art Therapy Guide) https://www.psychologytoday.com/ca/blog/arts-and-health/201703/drawing-picture-health-art-therapy-guide

Arthritis (Guided Imagery For Arthritis) https://www.arthritis.org/health-wellness/treatment/complementary-therapies/natural-therapies/guided-imagery-for-arthritis-pain

Calgary Neuropathy Association (Visualization And Pain Management For Neuropathy) https://calgaryneuropathy.com/visualization-pain-management/

Brain (G. D. Schott: Pictures Of Pain And Their Contribution To The Neuroscience Of Empathy) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4408436/

Empowering People Living With Chronic Pain Through Pain-Neuroscience Education

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I’m excited to share a guest post by Ann-Marie D’Arcy-Sharpe, a freelance writer and blogger who lives with chronic pain. She writes for Pathways Pain Relief, a chronic pain relief app and blog, which is created by pain patients and backed by the latest pain science. I definitely learned a new thing or two by reading her article, so I hope you do too! 

Empowering People Living With Chronic Pain Through Pain-Neuroscience Education

Chronic pain affects a vast proportion of the population. A 2019 study from the Journal of Pain states that, “Chronic musculoskeletal pain (CMP) affects about 20% of the population in western countries, causing suffering, disability, and a significant loss of quality of life”. Not only does chronic pain affect many people’s lives, it also takes up a great deal of health resources and accounts for many people being out of work. 

For a long time, those with chronic pain have received little in the way of effective treatment options. Thankfully, the face of modern day pain treatment is changing. Pain-neuroscience education (PNE) has become a cornerstone of chronic pain treatment. Understanding the science of chronic pain can be a powerful tool to empower people in pain to retrain their brain away from pain. Having people living with chronic pain understand that the brain produces all pain, and that it’s neuroplastic, helps to instil the confidence that pain is changeable.

PNE is often part of chronic pain treatments such as physiotherapy, cognitive behavioural therapy (CBT)  and other psychological treatments. This form of education teaches those in pain about the science of acute and chronic pain, so they can have a clearer understanding of pain moving forward. Often metaphors and stories are used to help people in chronic pain relate the science to their own lives and provide a deeper understanding. 

This study explains that PNE, “incorporates the multidimensionality of a pain experience and helps patients reconceptualise pain through understanding the multiple neurophysiological, neurobiological, sociological and physical components that may be involved in their individual pain experience.”

At Pathways (our pain therapy app), we found the best results by starting our program with PNE. Those in pain often tell us that understanding the science behind their pain was key to their recovery. Understanding that pain doesn’t equal damage, and that our brain and body learns pain, helped them to change their perspective on pain, as well as strategies to deal with it.

A 2019 study on PNE states that, “The use of pain neuroscience education (PNE) has been shown to be effective in reducing pain, improving function and lowering fear and catastrophization.”

The way those living with chronic perceive pain has a significant impact on pain levels. This study clearly states that, “Pain is complex and it is well established that various cognitions and beliefs impact a patient’s overall pain experience”. 

Giving people living with pain hope and the ability to see why and how treatments work can lead to more positive, adaptive perceptions of pain and the pain experience. This in turn reduces symptoms and encourages more adaptive coping strategies. People are far more likely to really engage in their treatment when they have this basis of understanding to work from.

Often people in pain experience deconditioning from lack of activity. This can contribute to pain levels and make daily activities harder. With more positive perceptions of their pain and the understanding that engaging in activity is not going to harm them, people can start to recondition their bodies. As muscles become stronger and the body becomes fitter, pain is reduced. 

Once fear is tackled with knowledge, the stress that accompanies chronic pain can be reduced. This in turn helps to break the stress and pain cycle. Since stress worsens chronic pain, this is actively helping to reduce symptoms and enabling patients to feel more in control of their lives. 

Through PNE people in pain are made aware of the difference between maladaptive and adaptive coping strategies and learn that their behaviours directly influence their symptoms. They can come to understand the need to implement more adaptive behaviours and can feel more motivated to do so. Given that so many people with chronic pain feel powerless, understanding that they have more control over their pain levels than they may have thought can be incredibly liberating.

Giving people a sense of hope that their symptoms can improve is a vital and significant part of pain treatment. It’s so important that PNE is part of pain treatment moving forward to set people living with chronic pain up for success! When there are effective treatments available, nobody should be left in chronic pain without hope. 

References

Galán-Martín, M.A., Montero-Cuadrado, F., Lluch-Girbes, E. et al. Pain neuroscience education and physical exercise for patients with chronic spinal pain in primary healthcare: a randomised trial protocol. BMC Musculoskelet Disord 20, 505 (2019). https://doi.org/10.1186/s12891-019-2889-1

 

Louw, A., Puentedura, E. J., Diener, I., Zimney, K. J., & Cox, T. (2019). Pain neuroscience education: Which pain neuroscience education metaphor worked best?. The South African journal of physiotherapy, 75(1), 1329. https://doi.org/10.4102/sajp.v75i1.1329

 

Adriaan Louw & Emilio J Puentedura, (2014), Therapeutic Neuroscience Education, Pain, Physiotherapy and the Pain Neuromatrix. International Journal of Health Sciences, September 2014, Vol. 2, No. 3, pp. 33-45. DOI: 10.15640/ijhs.v2n3a4

Bio: I’m Ann-Marie D’Arcy-Sharpe. I am 33 years old and work as a freelance writer and blogger. I live with bipolar disorder, fibromyalgia and arthritis.

I write for Pathways Pain Relief, a chronic pain relief app and blog. The app is created by pain patients and backed by the latest pain science. We use mind body therapies to help pain patients achieve natural, long lasting pain relief.

You can download our app here: https://www.pathways.health/

 

Coping With Uncertainty: Going Where the Flow of Your Chronic Illness Takes You

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Unfortunately, illness takes away much of our control over our own lives. But there is a blueprint for coping with life’s fundamental unpredictability. Putting the anxieties and unknowns of life under the heading ‘Future Events I Cannot Control’ helps to keep me sane, especially in the face of scary symptoms.

Coping With Uncertainty:

Spring lends itself to new beginnings, from planning spring cleaning, to starting up projects, to contemplating healthier choices.

When you live with chronic pain, it’s easy to decide on a new initiative, but difficult to actually accomplish it. The unpredictable and overwhelming nature of fibromyalgia and chronic illness symptoms mean that completing something isn’t only a matter of motivation and effort. Unfortunately, illness takes away much of our control over our own lives. This leads to feeling powerless, which is hard to live with. You have to go with the flow of your illness, wherever it takes you.

It can help to take the long view on the uncertainty of life. As they say, “humans plan, and God laughs.” All people have to contend with the fact that they cannot control the future. This truth may be more visible in the lives of people with chronic illness, but it applies to everyone. Striving and straining to attain the impossible — control of the future– can be an exhausting and defeating waste of mental and emotional effort.

I recently developed a mysterious knee pain, and my knee becomes red and swollen sometimes. This has significantly limited my ability to walk and drive, and do basic daily  activities. While I wait on multiple referrals to specialists, I have to live without knowing whether I will I have to permanently live with this new disability. Unknowns like this are scary, and naturally produce worry and anxiety. At times like this, I come back to the Serenity Prayer: “grant me the serenity to accept the things I cannot change, the courage to change the things I can , and the wisdom to know the difference.” Beyond containing a universal truth, I think that this prayer offers a blueprint for coping with life’s fundamental unpredictability.

During a period of heightened uncertainty, it’s useful to mentally review the worries that arise, and divide them into two categories: things you can change, and things you can’t control. For the first category, put the analytical, problem-solving part of your brain to work coming up with strategies and  to-do lists. In the case of my knee, that has included day-to-day coping strategies to make myself more comfortable. For example, I bought a chair for the shower to make washing easier.  I looked up ways to make at-home ice packs using water and rubbing alcohol in Ziploc bags so that I can ice my leg frequently to keep the swelling down. I’ve been keeping careful track of my daily steps so that I don’t go beyond what I can handle. While these proactive steps don’t address the fundamental question about what will happen in the future, they do make me feel more in control of the present. It isn’t easy to do something that makes me feel more disabled than a month ago, like sitting in the shower, but I’m doing what I can, and that feels much better than doing nothing.

So what about the second category — the things we cannot change? Sometimes the simple act of acknowledging  that there are things beyond our control can be a relief. When worry and apprehension take over your mental attention, they’re often based on the assumption that you have the ability to change external circumstances. Setting that burden down can be freeing. Of course this doesn’t mean that you stop caring about outcomes. It’s a fallacy to say that choosing to live in the present without always being preoccupied by future worries means that you don’t care about what will happen.

Putting the anxieties and unknowns of life under the heading ‘Future Events I Cannot Control’ helps to keep me sane, especially in the face of scary symptoms. My Grandmother used to say that “we’ll cross that bridge when we get there.” The older I get, the more I realize the wisdom of that saying. As mindfulness practitioners like to remind us, we only ever live in the present moment, not in the future, or the past. The visual of a mountain, sitting still and unmoveable in the face of all weather and seasons, is sometimes used in meditation because it captures the spirit of being grounded in the present. There are different practices that can help us to cultivate equanimity in the face of uncertainty, such as mindfulness, cognitive behavioural therapy, or prayer. The gist of these comes down to being self-aware about what we mentally focus on, and deciding whether the issue is something we can change or something we cannot control. We need to do what we can to address the things within our power, and let go or surrender what we cannot (over and over again, sometimes). In the long-term, I don’t know what will happen regarding my knee. Right now, I think I will go get another ice-pack and start thinking about what to make for dinner.

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