By Sherene Chen-See
Do you live with pain associated with multiple sclerosis (MS)? Then you have a good idea of the physical and mental health challenges that come with pain. You’re not alone – half of all people living with MS experience pain.
To highlight International Pain Awareness Month, we’ve asked three experts – Dr. Jacqueline Kraushaar and Dr. Shane Wunder, both of University of Saskatchewan, and Dr. Robert Simpson of Toronto Rehabilitation Institute – to offer some insights about chronic pain and mental health in the MS community.
What is chronic pain?
“Pain is usually described as chronic when it lasts more than three months,” said Drs. Kraushaar and Wunder. “It may occur without a known cause, or last longer than expected after an injury has healed. Pain is a personal experience which is influenced by biological, psychological, and social factors.”
“MS itself can cause pain; physical symptoms of MS such as weakness or poor balance can impact your posture, and the way you move your body or your activity level may contribute to musculoskeletal pain”, they explained.
In addition, “people with MS are at higher risk for certain painful conditions, such as trigeminal neuralgia and migraine,” said Dr. Simpson.
Neuropathic pain, which is typically associated with the central nervous system, is often described as burning, tingling, or shooting pain, and is more frequent among people with MS. This is in contrast to non-neurogenic or ‘nociceptive’ pain, which is typically associated with tissue damage.
Beyond the pain scale
“The simple 0-10 pain scale is not a reliable rating of someone’s pain on its own,” said Drs. Kraushaar and Wunder. “We often forget how severe our pain initially was, and this skews the numbers when thinking back.”
For these reasons, many chronic pain questionnaires and medical histories that healthcare providers collect focus on the type, quality, duration, and aggravating and alleviating factors of pain rather than just the intensity. The best measure for how pain impacts someone is how it affects their day-to-day function.
“Healthcare providers also need to remember to ask about pain in a sensitive, non-judgemental manner, and be guided by the patient as to how best to respond,” said Dr. Simpson.
Prepare for a discussion about pain before your next doctor’s appointment, record a detailed history of your pain so that you can discuss it accurately. Note what circumstances trigger your pain, if any — for example, do you experience flare ups after certain activities? Bring a list describing all your pain symptoms. Rate your pain on a scale of zero to ten and note what activities, time of day, and any other possible contributing factors that affect your pain. Know what medications you are taking and any possible side effects they may have.
Find more advice on communicating about pain with your healthcare team on page 22 of the ‘Managing Pain & Sleep Issues in Multiple Sclerosis’ guide. The document provides additional information on pain management and treatment in MS.
Impact of chronic pain on mental health
“Your pain experience is multi-dimensional and can include feelings of sadness, anxiety, or fear,” said Drs. Kraushaar and Wunder. “Pain can make you more irritable and more likely to decrease your social contact with your family and friends. It can impair your ability to work or do daily activities, such as housework. Pain can also affect your sleep.”
Does pain impact your sleep? Learn more about how to limit sleep disturbances and get the most out of your shut eye.
“All of these changes can contribute to worsening of pain overall, and the chronic pain cycle can continue to feed itself”, they added.
We know that people with MS are at increased risk for depression and living with pain can bring on or worsen depression symptoms. For this reason, it is important to recognize and treat the psychological factors associated with pain in MS as early as possible. Increased support from loved ones, the community and healthcare team are key components of managing pain in MS.
Managing chronic pain
Management strategies ideally incorporate a holistic approach – looking at a person’s pain experience from a physical, cognitive, emotional, and spiritual perspective. Ultimately, the management of pain should be individually tailored.
Options for pain management include behavioural pain management programming, stress reduction and relaxation strategies, regular and varied exercise, healthy lifestyle choices (e.g., diet, sleep), medication(s), and [non-medicinal strategies], said Dr. Simpson.
Taking care of your mental health
“Addressing the mental health consequences of chronic pain is a key component of [pain] management and has been shown to be even more effective than medications,” said Drs. Kraushaar and Wunder.
“Mindfulness-based activities and cognitive behavioural therapy (CBT) are both great options for this.”
According to the Centre for Addiction and Mental Health, CBT is a structured, goal-oriented type of psychotherapy where one learns to identify and change one’s thoughts, attitudes and beliefs.“Education is key; healthcare providers can share information and resources to support [mental health] and living well with chronic pain,” indicated Dr. Simpson.
There is also a strong association between benefits to mental health and regular physical activity.
Maintaining an active lifestyle
“The chronic pain cycle builds on itself: pain can cause you to be less active because it hurts to move but being less active [leads to] deconditioning (loss of muscle mass and heart/lung health),” explained Drs. Kraushaar and Wunder. “If you are more deconditioned, it takes more effort to do the same activities you did previously, which can trigger more pain and cause you to avoid even more activities as a result.”
“The best way to combat this is to stay as active as possible,” they continued. “Low impact activities such as walking, cycling, aquacise, or yoga are great places to start. Gradually incorporate a little more activity each week to help you improve your physical health and chronic pain.”
Complementary and alternative approaches
Complementary and alternative approaches can be helpful in the management of pain. These include application of heat or cold, transcutaneous electrical nerve stimulation (TENS), stretching, massage, acupuncture, or chiropractic therapy, to name a few, said Drs. Kraushaar and Wunder.
Medications
“Several medications have good quality evidence for effectiveness, but also come with cautions as they can affect other common symptoms of MS, such as fatigue and cognitive difficulties”, said Dr. Simpson.
Before beginning a discussion of appropriate medications to manage pain with your healthcare team, it is important to identify the type of pain you experience and its persistence.
“In the past, people often thought that medications should make them completely pain-free”, said Drs. Kraushaar and Wunder. “This led to over-prescribing of medications which had the potential to lead to addiction [such as opioids], often because the expectations for treatment were not clear from the beginning.”
“We now know that opioid medications should not be a first step in managing chronic pain,” they continued. “Although we may not be able to take away a person’s pain completely, we can use a goal-based approach to help reduce pain symptoms and improve quality of life.”
“For those patients with chronic pain who require opiates, it is important to acknowledge the stigma around use of these medications, which can have a negative impact on patients’ wellbeing and ability to access healthcare”, said Dr. Simpson. These patients deserve the same support and encouragement as other people living with chronic pain.
A final word
If you live with chronic pain, help is available. Management of chronic pain can be complex and may involve a combination of several strategies discussed in this article. If you experience chronic pain, you may benefit from visiting one of the many specialized pain clinics across the country. (Find the one close to you here.) If you live with pain as a result of MS, talk to your healthcare team to learn about pain management strategies available to you, so you can live life to its fullest.
Great article. I think another thing to consider in pain surveys or attempting to measure pain on a scale is that many people with chronic pain don’t even remember what pain free feels like. When at least some pain is your normal, I think you score pain lower.
Well said! These researchers call it chronic pain but for those who live with it every day see it as the norm. I’ve found that article after article discusses the issues but when the barer brings it to the table society just shrugs it off with comments “you look well” or “you wear it well”. I’ve been told I’m faking MS and the best one was “you need to stop using MS as a crutch – get over it”.
On my pain scale it’s measured by the verbal factor – if I say owe it’s a 10 – end of gauging.
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