Ask the Experts: Aches and Pains
An estimated 1 in 5 Canadians suffers from chronic pain due to illness or injury -- and that number is likely higher among people living with HIV. Three experts give their best advice on how to cope with persistent pain.
Living with HIV since 2003
I've had pain throughout my body for more than a decade. When it started I would wake up doubled over in pain. I also have numbness in my feet, legs and arms; sometimes it feels like my feet are between someone's teeth. I haven't been given a diagnosis for most of my pain but an X-ray confirmed that I have arthritis in in my knee. At 71, I am the oldest in my HIV support group and seem to be the only one living with chronic pain. Is it due to the HIV, my HIV meds or aging? No one knows for sure.
The pain affects my activities but it hasn't stopped me from being active. I used to walk for miles; now I walk just a couple of blocks at a time with my Nordic walking sticks. I used to dance -- the mambo, cha-cha, paso doble, tango. Unfortunately, I can't dance anymore.
My doctor suggested I take up swimming, so now I swim for an hour every other day. It works beautifully: Swimming improves the pain, diminishes the tingling in my feet and reduces the swelling in my knee by 50 percent. My clothing now fits more loosely, too, which is a bonus. And because I have less pain, I sleep much better.
I think that my pig-headedness helps me. I won't give up. If I'm getting a pot or pan out of a low drawer and I'm unable to get up, I say to myself, "You son of a gun, you better follow this woman," and then I pull myself back up. My advice to others is, if you don't have a pig head, borrow one!
As people living with HIV, our bodies don't always respond well to stress. So, having fun and laughing are important, too. I'll watch standup comedians for hours on end and laugh until my ribs ache.
I'm not complaining. There are people my age who don't have HIV and are living in nursing homes. I live independently, I have four volunteer jobs and I have season tickets to Regina's Globe Theatre. I share my horror story with nurses and whomever I'm invited to share with. It can be tough and sometimes I feel like quitting the fight but I count my blessings. I still enjoy life to the fullest surrounded by my family and friends.
Most of my acupuncture clients who are HIV positive come to me for chronic pain. Many are dealing with neurological pain, which typically takes the form of numbness or a burning sensation in the hands and feet, or chronic headaches.
Long-term pain not only hurts you physically but it also drains the body's resources and can be exhausting. These problems are compounded by the fact that pain is invisible and most people don't talk about what they're going through, so they don't get a lot of sympathy because others don't realize that they're hurting. This can be isolating and demoralizing. That's the harsh reality of living with chronic pain.
As a practitioner of Traditional Chinese Medicine (TCM includes acupuncture as well as herbs, massage and other therapies), I believe in the presence of chi (energy flow) and I look at why a patient's chi is less than ideal. Pain and other symptoms can be alleviated when a person's chi is balanced and moving more strongly through the body. If I can balance a person's chi and get it moving more smoothly and strongly through the body, I can alleviate their symptoms.
When treating a new client, I start by taking a detailed account of their overall health, past and present. I take their pulse and examine their tongue. Based on this, I deduce how their body is functioning and how well their chi is flowing -- where it is strong and where it's weak or poorly regulated. Then I select acupuncture points that will help rectify the situation. Once I've placed needles, I like to leave them there for at least 20 minutes. However, some people with chronic pain can't comfortably sit or lay still for that long, so the treatment is adapted to each individual.
One of my goals is to reduce a person's need for pain medication, as many people with HIV are already taking other meds. If I can control their pain with acupuncture, they can stop taking prescription and over-the-counter pain control drugs, which is good for the body and the pocketbook!
Everyone wants to know how long it will take for the pain to go away. We've all heard stories of people who experience dramatic gains immediately, but, unfortunately, that is not the norm. Alleviating a person's symptoms is typically a process, not an event.
Most of the people who come to see me have already struggled with their pain for months, years, even decades. I can often get a person to a point where they no longer need to take pain medication and they see me only about four times a year. It takes time to get there, but it can certainly be done.
Infectious diseases specialist
Hotel Dieu Hospital
In my clinical HIV experience, pain often relates to a prior injury or osteoarthritis. While peripheral neuropathy can be debilitatingly painful for many people, for some people painful peripheral neuropathy appears to "burn out" and does not require pain therapy.
Chronic pain can put stress on all aspects of a person's life -- your activities, spirit and mood, your relationships and ability to work. Unfortunately, there's no easy fix. A thorough evaluation of the type of pain and, if possible, what's causing it is a critical component of managing it. The pain management strategy should be guided by whether the source of the pain is from a cancer (malignant) or not (non-malignant).
Although medical treatments, such as over-the-counter and prescription medications, can be valuable for managing pain and minimizing the impact it has on your life, they may not be the most important part. Robust coping skills and mind-body techniques can make a big difference. The people I've met who are best able to cope with pain work hard to minimize its impact on their day-to-day lives. In many instances, this means modifying one's expectations and actively pursuing activities that bring a sense of well-being, whether it's exercising or making music or engaging socially -- whatever works for you. There are also peer support programs that can help break a person's sense of isolation and connect them to resources and tools that help them cope while trying to live life as fully as possible.
A number of clinicians believe in the power of mindfulness as an important component of an effective strategy. Mindfulness teaches you to become conscious of what you're thinking and feeling in the present moment without judging it. The theory is that this might interrupt feelings of stress, anxiety and depression that can exacerbate pain. I believe that practicing mindfulness is most effective when combined with other strategies, such as physical therapy.
For people who have addictions, managing the addiction and dealing with underlying mental health issues with the help of a knowledgeable expert is also critical. That's because underlying mental health issues can heighten pain and vice versa, creating a vicious circle.
Finally, I caution patients against the long-term use of narcotics -- such as oxycodone (OxyContin, also in Percocet), Tylenol 3 and 4, Demerol -- and against increasing their dose, as these drugs can cause serious side effects and be extremely addictive.
Where Does It Hurt?
Keeping a pain diary can help you track your symptoms and how you're feeling day to day. Where is the pain? How bad is it? How is it affecting your mood, sleep and activities? What brings you relief? What makes it worse? This can help you and your healthcare providers monitor your pain and notice any patterns.
For a listing of pain clinics in Canada, visit The Canadian Pain Coalition at canadianpaincoalition.ca