Friday, June 14, 2024

Personal Stories About Tackling Chronic Pain With Courage And Determination

From the physical aspects of pain to its mental components, to the social parts of one’s life that chronic pain affects, everyone’s experiences with chronic pain are different. Chronic pain is a very personal and individual experience. 

I have rheumatoid arthritis (RA) and experienced chronic pain for years, living with varying levels of daily physical pain in my hands, wrists and feet. The intensity depended on the time of day (it was much worse in the afternoons when my hands and feet would throb; sometimes it felt like my wrists were on fire) and with changing weather. (I was a walking barometer!) The pain was exhausting: Coping mentally and physically was a chore. Over-the-counter medications didn’t alleviate the discomfort, and only after working with my rheumatologist to control my RA symptoms did my pain dissipate. Today I’m in remission and exceptionally lucky to rarely experience pain, but I vividly remember those days. 

Chronic pain is recognized as its own disease and may be the result of a chronic disease or acute pain that has developed into chronic pain. For the most part, it’s invisible, which makes it harder for others to understand what you’re going through; this is part of what contributes to its stigma and isolation. Chronic pain permeates all of your life, affecting health, relationships, jobs, the ability to participate in and contribute to society and more. 

Treatment of chronic pain is as personal as chronic pain itself. For many of us, finding effective treatment(s) takes time and trial and error. What works for one person may not work for another. Most people combine several approaches, including, but not limited to, pharmaceutical therapies, acupuncture or massage, mindfulness meditation, cognitive behavioural therapy and medical cannabis. 

Comeback highlights inspiring stories of aging, recovery and people building new and rewarding lives in the face of health challenges. By profiling individuals who live with daily chronic pain, we hope you can learn from their experiences and be empowered to find the right solutions should you, or someone you love, live with chronic pain. 

Advocating for others: Linda Wilhelm

Linda Wilhelm, who has lived with chronic pain for close to 40 years, turned her condition into a calling. Today, she’s a well-known advocate for Canadians who live with chronic disease and pain.

Wilhelm, 60, was diagnosed with (RA) in 1983. She was a young mother who had just given birth to her second child when the persistent and overwhelming pain in her left ankle and right elbow prompted her to seek a diagnosis. 

Initially, Wilhelm’s RA affected only two of her joints. Those joints were often painful and inflamed as her own immune system attacked and attempted to destroy them, as though they were foreign to her body. She experienced a short remission while pregnant with her third child, but after giving birth in 1987, her RA returned, this time aggressively attacking all of her joints except her left elbow and her right ankle. Imagine every joint in your body, but two, screaming with pain. 

At the time, there were few effective treatments and the disease had years to progress, irreversibly damaging her joints and laying the foundation for the pain she still deals with today. 

Like many, Wilhelm was terrified of becoming dependent on pain medication, seeing it as a weakness rather than a solution: “I resisted for many years but finally, in order to be a decent parent [to my three young children], I had to do something to manage the daily pain.” 

And so began Wilhelm’s efforts to find treatment solutions so that she could embrace her life.

Wilhelm and her family have lived across Canada and in the US; today, home is Midland King’s County in rural New Brunswick. Over the decades, she has tried many therapies to manage her RA and pain: She is constantly aware that what works today might not work tomorrow. Like many living with chronic pain, she has sometimes felt left to her own devices. However, she always keeps open the lines of communication, working closely with her family physician and rheumatologists to find new treatments (this includes 14 surgeries, either to replace or to fuse joints). 

Wilhelm now has a comprehensive toolkit that includes activity and exercise (a daily walk or a swim, as well as playing with and caring for her six grandchildren); pharmaceutical therapies (in 1999, she fought hard to be one of the first people in Canada to receive a biologic drug, and employs a variety of pain medications, including opioids); as well as acupuncture, massage, meditation, physiotherapy and music. 

She tailors her approach to her symptoms and daily situation. She has also recently transitioned to public from private insurance following her husband’s retirement.

At this point, she has the experience to know which methods or treatments will help, which she needs to advocate for and which is most appropriate in the moment and in the longer term (for example, when going on vacation).

Although the unpredictability of her RA symptoms meant she was unable to manage paid work, Wilhelm embraced volunteerism and advocacy: “Pain can be isolating, so it is important to stay active and social, which can be difficult when you are tired just from dealing with it day to day.” 

Wilhelm is president of the Canadian Arthritis Patient Alliance; a patient partner in the Chronic Pain Network; a member of the Drug Safety and Effectiveness Network; and a participant in various Health Canada expert advisory committees. 

She uses her voice to ensure that policy makers understand the isolating reality of living with chronic pain. If she has one piece of advice for others in this situation, it’s to be diligent in seeking solutions: “You know your health needs, and you need to speak up when they are not being met. There is no one simple, quick fix for chronic pain.”

Pain and persistence: Laurie MacEachern

Laurie MacEachern’s decades-long effort to manage chronic pain is a story of trial and error that has involved everything from alcohol to opioids, and today has her in the garden growing her own medical cannabis. 

The 61-year-old, who resides in a village between Ottawa and Cornwall, has lived with severe idiopathic neuropathy for about 25 years. Her symptoms started with constant numbness in her feet and escalated.

“It felt like my feet were always burning, always in pain. The pain changes all of the time – sometimes it feels like the bottom of my feet are being stabbed, are on fire or are being pelted with sleet.” 

MacEachern has seen numerous specialists, undergone countless tests, and knows only that her nerve pain likely results from an undiagnosed autoimmune disease (she also has fibromyalgia and irritable bowel syndrome). 

For nearly two decades, she tried to dull the pain with alcohol and over-the-counter medications, managing to continue at a job she loved in process engineering and data architecture. 

However, symptoms progressed to her calves, hands and arms, and by 2005 she says her “pain got to a point where I needed medication, and everything went horribly off the rails.” Dependent on multiple prescription medications, including opioids, she says the next two years were “absurd, almost like being semi-comatose.” 

Unable to function cognitively at the level needed simply to compose an email, she left her job and went on disability.

At the end of 2006, en route to the required bi-weekly appointment with her GP to renew her pain medication prescriptions, MacEachern had what she calls a “lucid moment, where I decided I needed to find help and I Googled ‘pain clinic.’” 

During her first appointment, she heard about medical cannabis being used to treat neuropathy pain. It was a breakthrough moment. 

The Montreal clinic’s psychological services also offered her a much-needed outlet to talk about her pain and valuable coping mechanisms. “Now, instead of my pain being in the same room as me, it’s down the hall, around the corner and locked up in its own room. It’s always there, but I’m not thinking about it. I can ignore it and I can function again.”

Initially, MacEachern obtained medical cannabis from the Montreal Compassion Club, then from dispensaries. In 2011, she applied for and was granted a licence to grow cannabis for her own medical purposes.

Today, she’s not taking any pharmaceuticals for chronic pain, and generally sees her GP once a year to help with the paperwork for her licence to grow.

MacEachern is open about her cannabis garden and use, which includes homemade butters, oils and balms. She likes being able to change what she takes and when, according to her pain level.

She encourages those living with chronic pain to talk to healthcare providers about medical cannabis, but recognizes that not everyone is comfortable with this option. That’s why, in an effort to help others and to counter the stigma, MacEachern speaks openly about her own experience and has participated in meetings with the House of Commons Standing Committee on Health in Ottawa. 

MacEachern acknowledges that medical cannabis isn’t right for everyone. However, she also knows how personal chronic pain is, and that it’s crucial for people to explore all their options. 

Chronic pain connections

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