1 ACTION Ontario Patient Advocacy Newsletter Generic vs. Brand Names As people living with chronic pain, we often need medications to help manage our pain. With increasing attention on managing the expense of drugs from both public and private insurance plans, there is a focus on using the lowest cost option. Generic medications, which cost less than brand versions, are generally found to be safe and effective, as regulators such as Health Canada require that they be shown to be bioequivalent with brand name drugs before being permitted for use by patients. The standards for bioequivalence in Canada are built upon internationally recognized standards. There must not be more than 20% difference in bioavailability between brand name and generic drug. Bioavailability is a measurement of the rate and extent to which a therapeutically active chemical is absorbed from a drug product into the systemic circulation and becomes available at the site of action (Health Canada). If two drugs are bioequivalent, there is no clinically significant difference in their bioavailability. However, ACTION Ontario physicians stress that there might be differences between generic drugs and brand name drugs despite bioequivalency. These differences may be due to some of the fillers or inactive ingredients of the generic drugs, as these are not mandated to be the same; besides they may be Advocacy Update ACTION Ontario continues its advocacy with the goal of establishing a comprehensive pain strategy in Ontario so that improvements in the diagnosis and treatment for chronic pain patients can be achieved. ACTION Ontario participated in the consultations on the Ontario s Seniors Strategy, so that the needs of the province s seniors who are impacted by chronic pain could be identified and addressed. We were pleased to see one of our key recommendations, in support of the shingles vaccine, was adopted in the seniors strategy report Living Longer, Living Well. Indeed, a public program for the shingles vaccine would provide a significant means of preventing post Optimism and Understanding Creates Hope What Patients Should Know different from manufacturer to manufacturer. Some patients may indeed be intolerant or allergic to the fillers. As well, sometimes small differences in bioequivalence may have a significant impact on the response of the patient to the drug if the therapeutic window is very narrow. If your physician wants you to remain on the brand name drug (and cost is not an issue), he/she should write in the prescription no substitution. Bill Daya, an independent pharmacist and member of ACTION Ontario s board, stresses communication all around between patients and their physicians and pharmacists. Patients need to be vigilant and report any changes in the effect of a drug or any adverse effects they may experience to their physician. For some categories of drugs, such as birth control pills, Daya recommends sticking with the brand original, as even small difference in bioequivalency can have a significant impact on outcome. Many research-based brand name pharmaceutical companies now provide smart cards, which cover the difference in cost between the brand and generic drug, so that patients don t need to switch from a medication that is working for them because cost or insurance coverage necessitates this. Talk to your pharmacist or physician whether such a smart card is available for the medication you are taking. -herpetic neuralgia the serious, lasting pain that shingles can cause. Seniors and chronic pain continues to be a focus of advocacy and awareness activities for ACTION Ontario this year, as the implementation of the seniors strategy is a priority for the provincial government. Along with seniors, other areas of focus include chronic pain and primary care, and the linkages between mental health and addictions and those living with chronic pain. Look to ACTION s advocacy toolkit on our website to help you advocate to your individual MPP for a comprehensive pain strategy for Ontario. Visit: Volume 4 Issue 1 Spring/Summer 2013 Inside this issue: Dear Readers 2 CPS Awards 2 Compensation for Chronic Pain After an Accident B/H Chronic Pain Support Group Part ll Profile Lisa Hooper Massage Therapeutic Therapy Chronic Pain and the Courts The Power of Peer Support Trillium Foundation 7 The Last Word Sleepless Nights, Wasted Days
2 Page 2 Editor s Message Dear Readers, Every issue of attempts to offer pertinent information to our readers, information that can potentially change the lives of chronic pain patients and/or their families. s success is due to the commitment of our contributors. From the expertise of Brenda Hollingsworth, Dr. Angela Mailis-Gagnon, Laura Greer and Sean Kelly to the experiences of Dr. Jim Henry, Glen Hutzul, Lisa Hooper, Mark Lawson and Norah Myers; each article is submitted with a passion and understanding second to none of s readership and I am continually grateful. would like to sincerely congratulate Drs. Angela Mailis- Gagnon, Barry Sessle and Judi Hunter for the recognition they received at the Canadian Pain Society (CPS) Conference held in May. These accomplishments are celebrated in this issue. On a personal note, this year marks the 10 th anniversary since the diagnosis of my Tethered Spinal Cord. Ten years is a long time and many wonderful things have Lucia happened since then. Most important are the recent births of our two beautiful granddaughters Lucia, nine weeks early, and Gwen, two weeks late. Their arrivals have put an entirely new perspective on my life with my husband of 32 years; it s now time to really start thinking about whom we Gwen are and who we want to be in the moment. I don t want to be as busy or distracted this time around as I was when we were raising our own four daughters who were born over a seven year period. To this end I have handed over the Chair of ACTION PNP to Lisa Hooper. Lisa is not only a dear friend but she is also a comrade-in-arms. Her journey and struggles are new and her wounds are fresh. She brings a here and now perspective and passion as I now venture forth on exciting new advocacy projects. Lisa is an amazing leader and person. I know you join me in welcoming her. Don t get me wrong, I ll never be far from ACTION or it s goings on. I will always have my pulse on the ACTION, no pun intended, as long as I m needed and wanted. I am deeply indebted to ACTION. In the five years plus since joining, I ve grown and I am grateful. will always be my home, one of my passions. In this edition, our 10 th (!) we are highlighting the need for the sharing of relevant information. Whether someone s been involved in an accident, is changing medications, looking for pain relief or advocacy tools, it is so important to know that there are people out there that we can communicate with and learn from; that we are not alone in this journey we call pain. Please feel free to share any information relevant to and/or our website at It s always a pleasure to hear from our readers. To all the resource centers and multidisciplinary health teams now receiving, welcome! Readers can join ACTION online at Wishing everyone a safe, healthy and pain free as possible summer. As always (Babcia)Janice Frampton Editor ACTION Ontario Board Members Receive Awards at 2013 Canadian Pain Society Conference Dr. Kenneth Craig, Dr. Angela Mailis-Gagnon, Pulsus President Robert Kalina & VP, Ann LeBlanc Dr. Barry Sessle was given the Outstanding Mentorship Award at the Canadian Pain Society Conference. Dr. Sessle is one of Canada s outstanding pain researchers, but has distinguished himself not only by his research into orofacial pain Dr. Angela Mailis-Gagnon, chair of ACTION Ontario, was selected to receive the Dr. Harold Merskey Award at this year s Canadian Pain Society Conference, held May 8-10 in Winnipeg. This award is given in honour of Dr. Merskey, founding Editor-in- mechanisms and by his service as president of the International Association for the Dr. Barry Sessle Dr. Judy Watt-Watson, President CPS Chief of Pain Research & Management, and is presented yearly to Study of Pain, the International Association for Dental Research, and the Canadian Pain Society, but also a primary author who has made a significant contribution to the by his mentorship of 30 graduate students and 60 field of pain, as demonstrated by the impact of original research published in the journal. postdoctoral fellows and visiting scientists who have gone onto successful careers in pain and sensorimotor research or clinical activities in Canada or other countries. (Continued on page 5)
3 Volume 4 Issue 1 Page 3 Compensation for Chronic Pain After an Accident By: Brenda Hollingsworth If you or a loved one suffers from chronic pain after a motor vehicle accident or a slip and fall accident, you have probably considered a lawsuit for compensation. Increasingly, Ontario courts are awarding damages to accident victims whose primary complaint is pain. However, achieving fair compensation when you do not "look" injured is not always easy. Do I have a Lawsuit? Not every injury gives rise to a claim. In order to succeed, the injured person generally has an obligation to prove "negligence". In other words, can you prove that someone else is responsible for the injury because of something he or she did, or failed to do? In a car accident situation, we look at who caused the accident. If someone ran a red light or rear-ended the vehicle you were driving, it will probably be easy to determine who was at fault. Other cases are less clear. A personal injury lawyer can help you gather the evidence you need to prove liability for the accident. In a slip and fall case, we look at the condition of the floor, sidewalk or roadway where you were walking. Should there have been salt and sand applied? Was there an unreasonably deep pot hole? If so, we may be able to establish negligence. How Much is My Case Worth? This is a very important question for most accident victims. However, it is a difficult question to answer early after the accident. This is especially true for chronic pain sufferers. To assess the value of your pain and suffering damages, your personal injury lawyer will look closely at the impact of your injury on your activities of daily living. Someone who is unable to work, or works less than before the accident, will receive more for pain and suffering than someone who can return to work. Reductions in your leisure and housekeeping activities will be taken into account. The Court looks closely at the before and after picture to assess the value of your case. Be aware of your past medical history and acknowledge it. Again, credibility is key for this invisible injury. Special Considerations For Pain Cases Unlike the accident victim with a fracture that shows up on an x-ray, the chronic pain victim has the added burden of proving the very existence of an injury on top of everything else. You can improve your ability to prove that you suffer from chronic pain using the following tips: *Be consistent when you report your pain to medical professionals. Always identify all of the locations of pain, even if you feel your doctor is in a rush or does not want to hear it. *Learn to describe your pain and what triggers it. Is it sharp? Dull? Throbbing? Intermittent or constant? Does it hurt more in the morning or at night? Being able to paint a picture is likely to garner more understanding from the judge or jury. *Follow the recommendations of your health care professionals whenever possible. It is much easier to prove you are in pain if you are actively following your doctor's advice. *Don't ever exaggerate your symptoms or capacity. Your credibility matters more in a chronic pain case than in a fracture case. The judge or jury has to believe your account for you to be compensated. If you are "caught" in an exaggeration, your case will be compromised. *Try to do as much as you can. Typically a judge or jury will be more sympathetic to the injured person who tries to get out of the house, volunteer or do rehab, than the person who stays at home. Obviously, your ability to get out of the house will depend on your individual level of injury. *Be aware of your past medical history and acknowledge it. Again, credibility is key for this invisible injury. You do not want to inadvertently deny a past history of headaches or lower back pain that is documented in your pre-accident medical records. Previous medical conditions usually only negatively impact a chronic pain case if the plaintiff denies their existence. How do I Start? As soon as possible after your accident, keep track of your expenses, rehabilitation appointments, police and insurance information. Once you are able to do so, you or a family member should contact a personal injury lawyer for a free consultation. Most lawyers will give you an assessment of your case and will let you know if you have a reasonable chance for success with no obligation. You should not let lack of funds deter you from seeking fair compensation. Most reputable personal injury lawyers in Ontario offer contingency agreements. That means you do not pay legal fees unless you get a settlement or judgment. Finally, do not delay. Brenda Hollingsworth Without the help of a lawyer, important evidence can be lost forever. Just as importantly, there are tight timelines for giving notice or filing a claim that you could miss if you do not get legal advice. Brenda Hollingsworth is a personal injury lawyer in Ottawa, Ontario. She has handled hundreds of chronic pain cases. To reach Brenda call or visit
4 Page 4 Burlington/Hamilton Chronic Pain Support Group Part ll By: Dr. Jim Henry (continued from Vol 3 Issue 3, Fall 2012) Several have found value in expressing or describing one s pain by writing a story about pain, whether their own story or that of another. Some have found value through writing a poem. Some have found this through art. As a result, extra sessions have been included on Saturday mornings. These include painting expression sessions, exercise sessions and meditation sessions. These have been arranged on specified weeks during the year. Surprisingly, attendance has been good and spirits high. People have brought their favourite music to play while they paint and some have even danced to the music. With music in the background, muffins and croissants with coffee/tea and colours on the canvass, the atmosphere is uplifting. Besides holding art sessions as an aid in coping with pain, the artwork has been amazingly expressive and was considered good enough for an exhibition at the Joseph Brant Hospital for a month. In addition, several paintings were combined into Expressions of Pain Through Art, a 2011 calendar. This calendar was developed for the purpose of public awareness of this invisible disease, and was sold at cost at the latest IASP Congress on Pain in Montreal. One of the members of the group discovered that she had artistic talent and has now become professional, selling her art and also painting on commission by request. Enjoyment in paintings and the benefits are obvious from the following spontaneous comments from some of those who have expressed pain through painting: "To uncover and portray pain is most personal. Acknowledgement is the quiet emotion with one strong tear observing the pain within. Close friends recognize and others become sensitive to this vulnerable pain. Emotional and physical pain hurts. Love keeps me bustling forward." WS "This is the tree that represents life, happiness and part of spring that gives me hope. The little orange colour is my pain around my body all day long. Painting helps me to ignore that suffering and pain" MR Thinking and sitting down painting is fun and peaceful journey. This process puts me at ease and give me a positive state of mind" AL "When I do painting I find that I lose myself. For those brief moments I do not think of pain. I focus on colours and the colours alone. I forget my ailments and create." CM Those who write their own stories do so not only for their own feeling of expression but also for the purpose of advancing the cause. The prospect of giving pain a voice and giving pain a face (our motto) with their story gives a motive and an incentive to write. This project is continuing. Support Group Picnic The support group is funded through the Ontario Pain Foundation, a not-for-profit organization incorporated in the Province of Ontario with Dr. Yashpal. Funds are raised through educational events and fundraising events. For example, each year a day-long continuing medical education course is held, attended mainly by local family physicians and numbering 89 to 100 participants. A fundraising event was held that was attended by over 60 people from the public. Another was a Middle Eastern evening with dinner and entertainment. Funds raised are directed toward the Burlington/Hamilton Chronic Pain Support Group and also to promote the Niagara Region Chronic Pain Support Group and one in Guelph. Dr. Yashpal and I provide our efforts as a community service. For example, in the month of June, 2012, a gala event/meeting was held with the St. Catherine s group, supported by Ontario Pain Foundation. On a warm beautiful summer Saturday afternoon, over 50 people attended the meeting to hear presentations, had fun and had tears while describing their frustrations with the system, enjoying raffles and door prizes, and bringing smiles to their faces! The regular meetings cost around $300 to 400 per month with some extra expense during the summer excursions, Pain Awareness Week and at Christmas time in addition to the extra classes scheduled sporadically during the year. Basically in six or seven thousand dollars, a support group can run for a year with a meeting each month as well as extra activities. On reflection, it amazes us that among the millions of dollars floating for pain projects there are practically NO FUNDS to run a reasonable support group in the community. It has been proven that to do so requires as little as six to seven thousand dollars a year. In these times, when Pain Pundits talk about patient Empowerment, there are hardly any funds available for such an endeavour. There are minimal funds for our Burlington/Hamilton group and funds for Guelph group meetings have been exhausted. Only sporadic finances are available for the Ontario Pain Foundation to support the Niagara group. The consequence is that the meetings in Guelph had to be suspended, and the Niagara group suffers from having only a limited number of programmes due to lack of funds. As researchers, we are surprised that there are no initiatives to investigate peer support groups for chronic pain, to develop models, to create implementation strategies, to measure outcomes and benefit, and to generate knowledge of how such support groups can have a positive effect on individuals, on families, on the healthcare system and on the economy. We may have come a long way, but we have a long way to go. In the end, it is the trust we have gained over the years from the people living with pain and the empowerment that they feel from learning and educational activities, which keeps our support group strong for now. For more information please
5 Volume 4 Issue 1 Page 5 Profile Lisa Hooper The rolling car that hit Lisa Hooper while taking a picture in Lily Dale New York during an impromptu vacation to celebrate her 40th birthday in July 2007 did more than just shatter her left tibia and fibula, it shattered life as she knew it. After being transported to Brooks Memorial Hospital in Dunkirk New York Ms. Hooper convinced the doctors that she had to return home to the Aurora area for surgery on her complex tib/fib fracture in order to be near her disabled son Peter who suffers with Smith-Magenis Syndrome, (SMS) a genetic developmental disorder. Once home, the single mother of two boys embarked on a five year medical/legal journey that changed her forever. Prior to her accident Lisa lived a fast paced multi-tasking life as an Executive Coordinator /HR for Liteline Corporation, a family owned company and loved her job. Having been married and divorced at an early age she now dedicated her life not only to family and job but also taking time to advocate on behalf of those pushed to the side by our society due to their special needs, especially her son Peter. My life wasn't balanced before the accident, she acknowledges. Traumatic situations teach us things. Nobody ever died wishing they d completed that last project or finished the dishes. Following numerous surgeries and various treatments and therapy Lisa s pain and symptoms remained. Having more questions than answers made her more determined to seek a diagnosis. She was told she suffered from arthritic changes as a result of the accident. She became depressed and constantly wondered why she wasn t getting any better. She described herself as feeling like a fly hitting the windscreen, always trying to get up but always ending up on your butt. In late 2008 Lisa was eventually diagnosed with Chronic Regional Pain Syndrome (CRPSII) by Dr. Cameron from the Holland Orthopaedic and Arthritic Clinic at Sunnybrook Hospital. It was Dr. Cameron who referred Lisa to Dr. Angela Mailis-Gagnon for a medical/legal consultation in March After being sent for a battery of as yet unperformed diagnostic tests including an EMG, Bone Scan and MRI Lisa s neuropathic pain and severe arthritis were finally diagnosed almost two years after her accident when she became a patient of Dr. Mailis-Gagnon s in June CPS AWARDS Everyone Having swum against the current for so long, having a diagnosis meant Lisa no longer had to feel isolated and alone, she also realized she did not have to live by her prognosis. understands what pain is but few understand the concept of pain that never goes away. "Knowledge is wealth to pain patients, she says. Everyone understands what pain is but few understand the concept of pain that never goes away. I have learnt to appreciate simplicity, create balance, better manage my health and realize the most important things in life are free and should not be taken for granted". Lisa joined the ACTION PNP Steering Committee in February 2009 as a way of advocating on behalf of others. Also, since she was now unable to be part of the workforce, the flexible volunteer work gave her a sense of purpose again. I wouldn t have been able to learn what I ve learned here from other pain patients anywhere else. As the new Chair of ACTION PNP Lisa is promoting the role of Peer Support for pain patients. She was very discouraged by the severe lack of knowledge and disregard displayed for pain patients by some of the medical professionals she encountered on her journey and believes this area is one that must be further explored. Whether out of fear or ignorance, so many doctors don t value that what they write directly affects the financial, emotional and physical well-being of a patient during a court case, WSIB and Insurance claims. There must be more education for Medical Professionals on the treatment, diagnosis, affects and management of chronic and critical pain patients. Thank you Lisa, this is a sentiment we all must support as chronic pain patients. Our very futures depend on it. ACTION PNP Chair, Lisa Hooper (Continued from page 2) Toronto, annually involving over 800 students from medicine, dentistry, Dr. Judith Hunter was given the Excellence in Interprofessional Education Award at the Canadian Pain Society Conference. For nursing, physical therapy, occupational therapy and pharmacy, which laid this award, Judi was recognized by her colleagues in the Canadian the foundation for interprofessional Pain Society for her long interest in developing and evaluating the pain care. This award is presented effectiveness of interprofessional pain education. Judi was chair of the Interfaculty Pain Curriculum for seven years at the University of by Purdue Pharmaceuticals. Kathryn Raymond, Purdue Dr. Judi Hunter, Dr. Judy Watt-Watson
6 Page 6 Massage Therapeutic Therapy By: Norah Myers I have managed chronic back pain for just over four years. I have been going for regular massage therapy for about five and a half years to help reduce the tightness and spasticity in my body that is associated with my physical disability. When I began to experience pain every day, the massage therapy took on new meaning. I asked my therapist Anna to pay specific attention to the place on my back that always hurt, and her touch relieved the pain. When I first started having massages, my therapist Melissa told me, You know how when you bang your elbow on something, your first impulse is to rub [your elbow]? It s because rubbing it counters the pain sensation. She was right. The massages I have received have been through physiotherapy clinics and pilates studios and usually have a stronger emphasis on rehabilitation than relaxation. The therapists I have seen have been trained to provide both kinds of massage, and each complement the other very well. I typically ask for relaxation treatment after a particularly tough pilates class, a stressful day, or when my back pain bites me hard. I have therapeutic deep tissue massages most of the time, which include work that can at times cause discomfort (even when the effects are very soothing). Managing pain and being in pain is stressful and exhausting. The psychological anxiety that accompanies physical agony can worsen the pain. Massage is extremely beneficial in addressing the emotional burden that accompanies pain because it relaxes a patient mentally and physically. It releases anxiety, tension, and stress. I have cried right through two-hour massages and laughed for ten minutes straight while receiving abdominal treatment. Massage, in this way, is similar to bikram yoga. No one can hide from hot yoga: it plainly and truthfully shows a person his or her strengths and weaknesses and sooner or later releases the pent -up emotions he or she tries to repress or suppress. I often come into massage therapy appointments determined to be quiet, private, and closed. I wind up leaving the therapy appointments completely depleted from crying, floating with peaceful energy, or giggling like a little girl. The same is true of bikram yoga. Massage is beneficial for anyone. Treatment should not be limited to those with disabilities, illnesses, pain, or stress. Massage comes in many forms and is adapted to suit every patient s individual needs and preferences. A therapist will always ask me what I would like addressed, where I am experiencing pain, and what I would like her to avoid. During my most recent appointment, I asked my therapist to soothe stress-related chest pain (in addition to treating my back and legs). She also adjusted her pressure on my adductors when she could see and feel that the treatment made me a little bit uncomfortable. There are times when massages feel gross. There are times when massages hurt. There are times when my body fights against the therapy. There are times when I have booked a massage and I do not want to be touched. There are times when my energy clashes with the therapist s energy. The highs and lows quite utterly are worth it. If I did not have access to regular massage therapy, my body would be tighter and weaker. My chronic pain would be worse and even more present than it is. I would also carry around a lot more negativity: worry, resentment, stress, and unhappiness. Massage is not an indulgence. It s a holistic form of self care that promotes happiness and healing. Chronic Pain and the Courts Clearer Skies Ahead? For many patients suffering from chronic pain, the physical pain can represent merely the beginning. Navigating myriad bureaucracies or legal proceedings can compound an already difficult journey for many pain patients. As ACTION Ontario works to provide self-management strategies for patients while advocating for a comprehensive pain strategy in the province of Ontario the organization is also cognizant of the immense burden filing multiple benefit claims can have on patients. Pain can be challenging enough, without the added anxiety. Recent court decisions can give hope to an easier (legal) path for those suffering from neuropathic pain. Late last year, the Ontario Court of Appeal overturned a lower court ruling that would have severely restricted benefits awarded to victims of serious accidents. The Court had been asked to examine the case of a woman whose pain had significantly impaired her ability to act as a caregiver, to work and to attend to her own basic personal care needs. Despite clear evidence and the opinion of a medical examiner, the woman s insurer had rejected her application, indicating that her pain may not be sufficient to be recognized as catastrophic impairment. Ruling in favor of the accident victim suffering from chronic pain, the Court of Appeal set a clear precedent that will support those looking to have debilitating chronic pain established as sufficient cause for catastrophic impairment. It appears that the legal system is catching up with the realities affecting chronic pain patients across the province; remember to familiarize yourself with the options available if you are facing issues with an insurance company. In the same way resources exist to help you manage chronic pain, you are also not alone in navigating the bureaucracy associated with having your pain recognized. Reach out to ACTION Ontario and be sure to sign up for our newsletter for more information on support services available.
7 Volume 4 Issue 1 Page 7 Profile Glen Hutzul How Peer Support Saved My Life and Gave Me A Future By: Glen Hutzul Some background: I ve lived with severe chronic pain on a daily basis for over 11 years due to a work related accident. As a result my injuries were treated through Workman s Safety and Insurance Board (WSIB) as well as by my family doctor. I am classified as having a Chronic Pain Disability (CPD) because my condition impairs my ability to function with respect to daily activities at both home and work. With medication prescribed by my family doctor and, eventually, the specialist at a Pain Clinic the pain was reduced enough that I able to stop my nightly ritual of bargaining; I would be willing to die if sleep would come and my pain would go away. The WSIB required me to attend a Functional Restoration Program where I learned new, less painful techniques for such basics, such as showering, toweling myself dry and even how to put away my dishes. A Pain Management Program showed me how different techniques could prevent pain from either occurring or increasing. I learned how narcotic medications could become more effective when combined with physical exercise; how various relaxation techniques can reduce the sensation of pain; that hypnosis, performed either by myself or someone else, could help to induce sleep in spite of flaring nerve pain. All of these Programs were valuable but one of the most beneficial was Peer Support. As part of the Functional Restoration Team that provided my diagnosis of CPD I worked with a Behaviour Therapist who had herself experienced severe chronic pain. She asked me what I wanted to do for the rest of my life. I don t recall her exact words but they amounted to this: do I want to look forward to the future or do I want to look back on my life? That question stopped me in my tracks. She said that if I kept looking back I will continue regretting all that I had lost. As I looked around at the other members of the group, I saw that they were angry, depressed and, in some cases, in denial of the seriousness of their injuries. I later learned that these emotions are some of the Stages of Grief and are to be expected from people who have suffered a serious trauma such as the onset of chronic pain. My injury and resulting pain had robbed me of many things: my house, my job as a tradesman, half my income, my garden, and my vacations in cottage country, even some of my friends. Others were dictating what would happen to me! Losing control of my ACTION Ontario receives grant from the Trillium Foundation ACTION Ontario and its patient group PNP were successfully awarded a grant from the Ontario Trillium Foundation to support the development of a chronic pain peer support program. ACTION PNP is partnering with the Dufferin Area Family Health Team to develop and pilot this initiative. life, I began to lose hope that I would ever regain control of my life. However, that question remained: what do I want to do: will I look forward or will I look back? I knew that I didn t want a life that was filled with nothing but regret for what I had lost. I didn t want to live my life feeling such negative emotions. I no longer wanted to feel burdened by depression and constant pain. I liked living and I wanted to look forward to it again, to laugh and to sing. I had to change! Responding to a suggestion from a pain physician, I started a Chronic Pain Support Group, along with several others, as facilitator. For many of the participants, including me, this group was our only social outlet for the month, especially for those of us who were no longer employed. Sometimes, pain patients can become isolated and withdrawn retreating like wounded animals to avoid contact with those around us. Our abled bodied friends don t and can t understand why we are always sick or cancelling at the last minute because they can t understand how absolutely debilitating it is to wake up every morning in chronic pain. Nor would we want them to understand. In Pain Support Groups, we accepted that all members have chronic pain so that was our starting point each month. We understood and accepted if someone nodded off because of their medication or began to cry because their pain became too much. We accepted each other at face value, no explanation required. Through this Peer Support Group, we shared successes and learned of alternative therapies and complimentary practices for pain management. We also learned about financial resources and legal services which many of us desperately needed. These new possibilities helped to restore hope to many of us. Overall well -being increased for many members. Pain matters less when one believes that life is getting better! Glen Hutzul Peer Support does not benefit everyone equally. Some are stuck in denial, anger or depression. They need professional assistance to accept that chronic pain may remain their companion. Thanks to the Ontario Trillium Foundation for supporting this worthwhile initiative aimed at connecting veteran pain patients and sharing experiences with those who are newer to living with this with this chronic condition.
8 Page 8 The Last Word Sleepless Nights, Wasted Days By: Dr. Angela Mailis-Gagnon Ms. AF was a 54-year-old woman who came to see me with complaints of electric shock-like pain in her leg after a leg fracture she suffered during a fall. My physical examination and different types of tests I ordered convinced me that the cause of her pain was a damaged nerve at the site of her ankle after her fracture had healed. Injury to nerves after some kind of trauma (a fracture or damage of muscles and ligaments) occurs infrequently, but when it does, it's a very difficult, usually life-long problem. Besides her pain, her worst problem was immense fatigue and daytime sleepiness. She could not keep her eyes open during the day as she said. She could fall asleep watching TV, reading a book or even talking to someone. She was afraid to drive as she felt drowsy behind the wheel. It was not hard to figure out the problem; her neuropathic leg pain was severely interrupting her sleep. While she would go to bed early, she would have a hard time falling asleep and even harder time remaining asleep. She would then be up hour after hour rubbing the leg, taking pain medications and watching TV to forget the pain. Exhaustion would finally get the better of her, she would collapse in bed for a couple of hours and then be up again in the morning, feeling as tired as she was before she went to bed. She had accumulated a huge sleep deficit over the many months of her affliction. After a couple of weeks of bad sleep, she would crash and sleep the sleep of death as she put it for nearly 18 hours. The story was then repeated again and again. Sleep is a natural state that recurs regularly, and it is necessary for survival, with the person, or animal, in a state of partial or total unconsciousness. In sleep sensory stimuli are blocked and activity of muscles is suspended. Sleep helps conserve energy by decreasing metabolism by 5 10%. During sleep numerous functions are accomplished such as memory consolidation (making permanent what was learnt in the awake state), while it enhances growth and rejuvenates the immune, nervous, skeletal and muscular systems. All mammals (breast feeding animals), all birds, and many reptiles, amphibians, and fish sleep. When we are awake the brain oscillates with fast waves called alpha, and is fully active. These oscillations are picked up during an electroencephalogram (EEG), during which electrodes are attached at specific points on the surface of the skull. Sleep is divided into two broad categories: rapid eye movement (REM) and non-rapid eye movement (NREM or non-rem) sleep. The American Academy of Sleep Medicine further divides NREM into three stages: N1, N2, and N3. NREM stage 1: The sleep is light as this is a stage between sleep and wakefulness (light sleep). The person becomes drowsy. The brain oscillates with slow waves (4-7 Hz or cycles per second) and the muscles are active. At this stage stimuli of low intensity can wake up the person. Pain itself can disrupt our sleep as it activates brain areas responsible for our awake state and dampens areas responsible for initiation and maintenance of sleep. It may impair healing leading directly to further pain NREM stage 3: This is truly the stage of deep sleep. The body s metabolism slows down, and sleep is dominated by very slow waves called delta (0.5-4 Hz or c/sec). It promotes immune function and secretion of growth hormone. Many environmental stimuli fail to produce any reactions. REM: Rapid eye movement sleep is also paradoxical sleep because although the sleeper shows fast EEG waves similar to a waking state, most muscles are paralyzed and it is harder to wake up than at any other sleep stage. Most dreams we can remember occur at Dr. Angela Mailis-Gagnon this stage. Brain activity is very high with brain oxygen consumption even greater than when the sleeper is awake. This stage of sleep is necessary for consolidation of memory (what we have learnt in our awake stage), and for regulation of mood (the way one feels). REM sleep accounts for 20-25% of total sleep, and occurs approximately every 90 minutes. Pain by itself can disrupt our sleep, as it activates brain areas responsible for our awake state and dampens areas responsible for initiation and maintenance of sleep. It may impair healing leading directly to further pain, affects central nervous system areas responsible for the way we cope with pain experiences, and consumes mental energy that is normally devoted to attention and concentration. Research has shown that patients with unremitting pain have impaired driving as much as those with alcohol blood level concentration of 0.08% (Veldhuijzen et al, Pain, 2006;122:28-35). Ms. AF was unable to reach the deep stage of sleep which is restorative and in general what we call sleep architecture was all messed up. So, how did I address Ms. AF s neuropathic leg pain? She was already taking strong painkillers to no avail, but what I added was a particular drug that works on injured nerves by dampening the abnormal firing that caused the electric shock-like pains to her leg (pregabalin). This same drug has been shown to have a specific effect on sleep as well. So with one shot I was aiming at two birds. I was right. When Ms. AF came to see me two months later, she was a happier person and looked quite refreshed. Her pain had improved considerably and so had her sleep. She now experienced fewer awakenings, much less fatigue, reduced daytime sleepiness and remarkable improvement in the quality of her life. Next time you or a loved one suffers from unremitting pain and sleep problems, bring this to the attention of your doctor. Addressing pain first may indeed improve your sleep quality. NREM stage 2: In this stage of deeper sleep, it is harder to awaken the sleeper. Conscious awareness of the environment is gone, activity of the muscles decreases and faster waves (theta waves Hz or c/sec) appear. Angela Mailis Gagnon, MD, MSc, FRCPC(PhysMed) Director, Comprehensive Pain Program, Senior Investigator, Krembil Neuroscience Centre Toronto Western Hospital, Chair ACTION Ontario is a publication of ACTION Ontario. All materials are the intellectual property of ACTION Ontario and cannot be reproduced without the expressed consent of ACTION Ontario.