INTRODUCTION

Read Dr Shulman's inteview with Willy Noiles, prior to his RIDE TO CONQUER CRPS July 19th.

This page also contains the lectures given by Dr Shulman last year.

MY SUMMER VACATION
in JUNE 2008 PARC PEARL

BY WILLY NOILES

Imagine using your summer vacation to cycle half way across Canada to raise awareness and funds for a disease that many have never heard of. One Toronto area physician will do just that in July when he rides his bicycle from Marathon, Ont. to St. John’s, Nfld. in an effort to raise awareness and research funds for CRPS.
Dr. David Shulman, a specialist in treating chronic pain at the Rothbart Pain Clinic in Toronto as well as being on staff at Markham-Stouffville and Ajax-Pickering Hospitals, will use his three-week summer vacation this year to raise much needed research funds by cycling. “It’s a good way to raise money for awareness and advocacy for CRPS,” he says. In the process he’ll complete a personal goal of cycling from one coast of Canada to the other.
Last summer Shulman cycled from Vancouver, B.C. to Marathon. Along the way he helped raise funds for an environmental awareness group. This summer he intends to complete that journey and help raise funds for CRPS/RSD. “This year I decided to move on to something a little closer to my work and something that needs the support,” Shulman says.
In his busy practice, Shulman treats a number of people with chronic pain, including those with CRPS, “a severely disabling condition” that is marked by a sharp, burning pain “that surpasses almost any other chronic pain condition” in its intensity. Those with CRPS or RSD, as it used to be called, are “perhaps the most challenging of my patients and the most distressed.”
Shulman emphasizes with those affected by CRPS and is well aware of the impact it can have on his patients’ lives and the lives of those around them. At the same time, it’s frustrating for him as a physician because CRPS “is a bit of a mystery.” It can be the result of trauma or no trauma. And while there are treatments that can help alleviate the pain, “we have no cure.”
But there is active research going on at McGill University, led by Dr. Gary Bennett, into CRPS. Half the proceeds from Shulman’s cycling marathon will go towards this research centre. The other half will go towards P.A.R.C. to support its advocacy work. “It’ll be helping P.A.R.C. to function by supporting research and advocacy,” he says.
Realizing the lack of support his patients have was one of the sparks that lit his quest to support CRPS on this summer’s cycling trip. Unlike those with lung cancer, heart disease, MS, AIDS, Lupus or many other diseases, those with CRPS have no large national organization fundraising year-round to find a cure. Shulman says P.A.R.C. helps fill that void.
The main influence that “stimulated and encouraged” Shulman to support CRPS, he says, was Helen Small, the executive director of P.A.R.C. “I took my lead from Helen, from her energy, her ideas and her advocacy for RSD.”
A believer in physical activity, Shulman rides most of the year. He makes a point of cycling to work each day he can. When he is unable to bike to work, he’ll run. He covers a distance of 50 km round trip each day, some days more. To prepare for this trip, he began riding more this spring.
When he rode from Vancouver to Marathon last year he covered about 190 km a day. “I wasn’t pushing it too hard,” he says. His challenge last July was getting through the mountains of British Columbia. The second day “was the hardest day of the trip,” he explains. “I was sore but pushed on and by the third or fourth day was OK.”
In the blog he kept of last year’s trip, on Day 4 (July 6, 2007), he wrote: “My daily distances are limited in B.C. due to the climbs and descents. There are at least two major climbs per day. I love the climbs but hate the descents.” Getting through Alberta’s Crow’s Nest Past, he says, was “quite a climb. The wind was howling.” To top it off, he got a flat tire near the top.
Along for the trip was wife Ahouva, a university professor, who drives the van. Before heading off each day, they would decide upon where to meet up for lunch and off they go, separately. They have cell phones and walkie-talkies (because there’s no cell coverage in some places) in case they need to reach one another. He also carries two bottles of water and a snack with him. Ahouva is “quite gregarious,” he says, and has a good time checking out various artisans along the way. One might think it would be lonely to cycle alone over long distances. Not so, he says. “There’s too much to see to get bored.” And in addition to the scenic views, there are the other cyclists he meets along the way. Some will ride a few miles with him. And some drivers will blow their horn in support.
He cycles about 12 hours a day. Around 7 or 8 p.m. he’ll meet up with Ahouva and they’ll have supper and pack it in for the day. At night they’ll camp or get a motel room.
Unlike last year where he didn’t have to ride through big cities, he’ll have to tackle Ottawa, Montreal and Quebec City this July, which means riding on the highways. He’s currently consulting maps in an effort to avoid the highways as much as he can. His other challenge this year will be the Cabot Trail, which is “quite hilly.”
This year’s Ride for CRPS will kick off Saturday, July 19 in Marathon. During the first week he estimates he’ll travel to Montreal. He’ll make a stop in Montreal at McGill where there are plans to participate in a conference. He hopes to reach Cape Breton by the end of the second week. In Sydney, N.S., he’ll tour Dr. Pollett’s pain clinic. By the end of the final week, he plans to hit St. John’s, where there’ll be a reception. He has 18 days to complete the trip, which he hopes will allow one day to start, one day to return home and hopefully one day to rest in the middle. On the nineteenth day, “I’ve got to get back to the office.”
Sounds like a lot of hard work for a summer vacation. Shulman, however, doesn’t look at it that way. “It’s a great way to see Canada,” he says.
As he counts down the days to his summer vacation, he’s getting inspiration from Troy Grimes, who’ll be running 50 miles from Big Spring to Odessa, Texas to raise awareness and funds for the RSD Association (RSDSA) in the U.S. “He provides a lot of motivation for me.”
By the end of this year’s summer vacation, he hopes to have raised a good deal of awareness and money for RSD as well as promote exercise. “Hopefully it will encourage more physical activity and more awareness of RSD,” Shulman says with hope evident in his voice.

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RIDE MESSAGES

DR SHULMAN ON CHRONIC PAIN

NOV 10, 2007.

(excerpt ©PARC PEARL Dec. 2007)

INTRODUCTION

We were fortunate to have Dr David Shulman come to talk about chronic pain for National Pain Awareness Week Nov 4-10,2007. He is a busy chronic pain doctor at Rothbart Pain Clinic in Toronto and two area hospitals.

CHRONIC PAIN

Pain is a personal experience and is very subjective. No one but you can feel your pain. Pain is whatever the sufferer says it is. Chronic pain is defined as pain for more than 3 months.
The gate control theory proposed by Melzack and Wall in the 70’s states that the large fibers inhibit the small fibers transmission of pain. Capsaicin is a good example of heat which competes with the pain signals to “drown them out.”

"Chronic pain is 'pain that has outlived its usefulness' and the 'pain signals become embedded in the cells in the nervous system so that the pain is hardwired in the body'. Cells change their anatomy and this is known as 'neural plasticity.'

An IPSOS Reid 2001 poll determined that chronic pain is the most common chronic illness with 30% of the population having pain each day. By comparison, another common illness is high blood pressure which affects 27%.
Pain is far reaching in its complex effects: financial problems, legal problems, emotional mental and relationship and family issues. Chronic pain patients are also more prone to infections.

There is no single way to test for chronic pain. The doctor simply asks if you have pain. A functional MRI (fMRI), not in general use, shows that the brain lights up in the cortex of a person in pain.
People in pain look differently; one lady was smiling while another looked very stressed and sad. There are many faces of pain.
In the IPSOS REID poll, 1 in 15 patients were receiving treatment for their chronic pain.

The audience shared experiences with many non-pharmacological or alternative treatments:

• Exercise
• TENS
• Acupuncture
• Laser therapy
• Physiotherapy
• Manipulation e.g. chiropractic
• Psychotherapy
• Thermal therapy
• Massage
• Traction
• Special shoes
• Cognitive behaviour therapy
• Hypnosis
• Biofeedback
• Hyperbaric oxygen therapy
• Isometrics, stretching

MEDICATIONS

Medications are given for mild moderate and severe pain. For mild pain, NSAIDS, aspirin and Celebrex were used while for moderate pain one used Tylenol 3, Tramacet, Percocet and Percodan which are short acting pain medications. Severe pain was the domain of narcotics, methadone, Fentanyl and other slow release medications or patches.
We discussed generic vs. brand names, the use of methadone and the controversial marijuana use vs. cannabinoids.
Opposing views were evident. The doctor advocated cannabinoids because they were a standardized dose of THC. A vocal patient who had a permit from Health Canada to grow and smoke marijuana for his own use, advocated marijuana because it was the only thing that helped his pain. Cannabinoid drugs included Cessamet, Sativex (nasal spray) and Marinol. Sativex was most useful for CRPS pain.

Special thanks to Dr Shulman for a comprehensive, interactive presentation. All of our questions were answered throughout the lecture and we thoroughly enjoyed his spontaneous humour.

June 2, 2007.

"CLEARING THE HURDLES"

(excerpt ©PARC PEARL JUNE 2007)

For our spring event on June 2, we were fortunate to have Dr David Shulman speak about CRPS at our annual seminar in Toronto. His deadly accurate portrayal of a person in pain who has to clear four hurdles, gives a voice to what we all face as CRPS and chronic pain patients.

FACES OF PAIN: The presentation began with the face of chronic pain—a man looking dazed and confused followed by a woman smiling. Each person is different.

HURDLE #1: “You don't look sick!”

This is the comment often heard from friends and family.

CLEARING HURDLE #1: Educate the professionals, work through patient advocacy groups and make yourself heard. Patients are the best advocates of what it is like to live in pain. Contact CRPS groups like PARC.

Have we improved our management of chronic non-cancer pain?

PAIN SURVEYS

A comparison between 2001 and 2004 surveys measuring physicians attitudes towards chronic pain:
“Pain causes needless suffering”: in 2001 67% and in 2004 72% agreed.
“Pain causes economic loss”: 13% agreed and in 2004 37% agreed.
“Doctors would prescribe opioids”: in 2001 30% and in 2004 51% did.
Patients attitudes to chronic pain have also improved: in 2001 31% took prescription drugs and in 2004, 49% did.

HURDLE #2: I believe you have chronic pain. Learn to live with it.”

• fatigue
• sleep disturbances
• functional ability is decreased
• low self-esteem
• loss of work
• family disruptions.
• change in relationships
• sexual dysfunction
• anxiety
• panic disorder
• social isolation
• depression
• thoughts of suicide.

CLEARING HURDLE #2:

“Intentionally leaving a patient in pain is a breach of fundamental human rights. It is also medical negligence and unprofessional conduct.”

Margaret Somerville, Professor of Law, Prof. Faculty of Medicine,

Founding Director McGill Centre for Medicine, Ethics and Law.

"This is a right for every person in pain; insist on your rights.

Stand up for yourself and ask for what you need,"

says Dr Shulman.

HURDLE #3: We don't know why you have chronic pain,

so we can’t do anything for you.”

Is this true? Can we overcome this hurdle?

HURDLE #4:”Even with a diagnosis, there is no treatment, so what is the point?”

Is this correct or can jump this hurdle as well?
Yes there is treatment and hope.

We thank Dr Shulman for his finely crafted, interactive presentation in which he encouraged dialogue with patients and promoted a greater understanding of CRPS and pain.

PARC NOTE: More on this presentation on our DVD which will be available with the RIDE TO CONQUER CRPS ! Contact us!