Thursday December 17, 2009
Reaction to Our Show on Chronic Pain
We’ve had quite a response to our show on chronic pain. Not surprisingly, we received quite a few emails from people for whom bodily pain is a daily occurrence.
Ian MacKinnon from Nova Scotia sent us this email:
“You show on chronic Pain almost made me cry. It took almost a year of living with severe pain and seeing a pain specialist to motivate my GP to give me pain killing drugs like Gabapentin and Percocet. I got side affects but not much pain killing. Then, my GP referred me to a methadone clinic and that doctor gave me the ability to live with my body. I am not sure how much more I could have tolerated. Currently, my pain is at a level I can deal with, and I have a MAJOR supportive family. I am disabled and I have heard "you don't look desabled" so many times. We all suffer in silence.”
We received this email from Joanne Bury of Redbridge, Ontario:
“I listened very intently to your programme today on chronic pain. I live with chronic pain and have for many years. I have Fibromyalgia - pain and fatigue have ruled my life for the past 20 years. I have been unable to work since 1993 and spent until 2003 raising my two daughters on Ontario Disability Support Program Income Support (ODSP). Now I get by on less than $900 a month disability pension with the CPP. I have always felt that my pain and my poverty were intertwined. I am in pain everyday. I walk; I go to Yoga once a week, yet the pain never goes away. Doctors do not like patients like me because things don't change and I am always in pain. I feel for anyone in pain, but I especially feel for those like me who also are poor. It just magnifies everything.”
Joanne, you’ve reminded us that chronic pain takes a staggering economic toll on society and on individuals. In my opinion, the lack of ready access to effective treatments and multidisciplinary pain clinics is not only mean-spirited; it’s also shortsighted in a financial sense. Studies show that the longer pain lasts, the less likely pain sufferers will be able to return to work, and the more likely the pain will affect the patient’s quality of life.
Erin Walsh of Ottawa made this important point:
“I enjoyed your recent show on chronic pain. I do feel, however, that you focused on patients who had chronic pain as a result of injury, and neglected to mention patients who have pain conditions that don’t come from injuries, such as patients with neuralgia. We're not often seen as having a real problem, especially since our pain isn't always ongoing. I once had a friend who is a doctor dismiss my diagnosis of neuralgia by saying I had tension headaches. I don't know if I've ever had a tension headache, but I know that over the counter cures tend to work for that, yet do not work on my neuralgia. An attack usually results in a week of unimaginable scalp pain, many areas of my head being sensitive to the touch, and the stabbing pain in the back of my head several times a minute for those seven days."
Sorry, Erin. We weren’t trying to suggest that chronic pain always begins with an injury or surgery. I’ve seen many patients with chronic pain that has no obivouis cause.
We also heard from families of pain sufferers. Darlene Brownell writes:
“I just had to write and say thanks for your show today. My mother also suffers from chronic pain, has been for close to 10 years and is on some very heavy narcotics. As I am young and healthy I find it difficult to understand her situation sometimes. After hearing others on your show today describe very similar situations it really helped me find more compassion again for her and her situation. I would very much like to learn more about this topic and if there is any possible solution out there. If there is anything you can recommend that would be greatly appreciated.”
Darlene, we've gathered some useful web sites at the end of this blog posting.
On the other side of the gurney, we heard from the people who care for patients with chronic pain. Matt Graham of Canmore, Alberta, writes:
“Thanks for this program. I think you nailed the complexity of the problem of chronic pain and also the growing powder keg which is opioid (narcotic) prescribing. I heard a little bit of the idea that there are alternative approaches beyond medicine to coping with pain. I work in an interdisciplinary pain clinic that has two programs. One is a return-to-work program where clients get education and training in changing their perceptions about their pain while trying to develop the physical strength to return to work. Pam Squires made some good comments about training clients to think about returning to some kind of meaningful functioning rather tahn eliminating their pain. The other program is to help clients whose narcotic use has not led to discernable improvement in their quality of life. To determine the extent narcotics are benefiting, patients are tapered off narcotics while measuring how well patients function without them. Then, they are reintroduced if doing so improves their ability to function. It's a very hard work but I am regularly blown away when people are able to develop skills and mindsets to cope with the suffering related to pain and how this then leads to a sense of confidence and skillfulness to cope day to day.”
We also received a great deal of advice from people who have found relief.
Deborah King writes:
“I had a long experience with chronic pain in my sternum (breast bone) after an acute chest infection, followed by pleurisy and then costochondritis. My family doctor wanted me to take pills for this. I did try one prescription and was terribly ill for days. I happened to be driving by a doctor’s office in my town and saw a sign for an acupuncturist. I was desperate, so I made an appointment to at least discuss my pain issues. It was my luck to begin treatment with a skilled doctor. He was a trained medical doctor in China, but did not retrain for Canada. He practiced acupuncture, herbal medicine and Chinese massage here. I put my trust in him because I had no other alternative. I became pain free and was able to return to work full time. I am a high school teacher and continue to work without difficulty. I can even work in the garden, etc. like I used to. As I listened to your program, I thought it would be helpful for doctors and patients to try other alternatives. I also wondered why medical professionals don't talk to each other at conferences so they can share their successes. When I asked my doctor about this, he said that Western doctors don't believe in his kind of medicine. It saved me from going over the edge."
Deborah, acupuncture has a fairly well established place in the arsenal of treatments for chronic pain in Western medicine. The Acupuncture Foundation of Canada Institute (AFCI) provides accredited teaching of acupuncture to health professionals. I’ve taken one course with AFCI. To your larger point, health professionals who see and treat lots of patients with chronic pain do tend to share ideas on the latest treatments.
Next year, the International Association for the Study of Pain (IASP) is holding the 13th World Congress on Pain in Montreal. This is the largest gathering of experts from around the world on the treatment of pain. The conference runs from August 29 until September 2, 2010.
And finally, we’ve had some additional comments on spinal cord stimulation, the electrical current that Adrienne Luksic uses to control pain caused by nerve damage that resulted from breast cancer treatment.
Catherine Dunne of Toronto sent us this email:
“I wanted to comment on the women who has found pain relief from her implantable spinal cord stimulator. She may very well have a unit made by Medtronic which is the company I work for, although not in our neuro division. Neurostimulators are an approved modality of therapy for pain management. However, despite these technologies being approved by Health Canada they are not universally available to patients. The government refuses to fully fund the technology and thus each patient must submit to a 'compassionate request' to government for the device and I can assure you the process is awash in red tape and the patient is not always granted approval. I recently met a patient who has suffered from debilitating back pain for many years and was in essence rendered incapacitated by the large doses of pain meds he needed just to be able to get out of bed. He was unable to get a pain pump funded, and when he offered to pay for it himself (he was a man of means), he was refused because doing so was counter to the Canada Health Act! This is the staggering inanity of bureacratic hippocracy that is our so-called socialized health care envrironment. It would appear that the gov't would prefer that you stay on addictive drugs and then put you on the disability payroll instead of returning you to full life working and paying taxes I say it's time for 2 tiered health care; not that such a system doesn't already exist in this country."
There are three vendors of spinal cord stimulators. They include Medtronic, Boston Scientific Neuromodulation and St. Jude Medical. Other sources of information include the Canadian Neuromodulation Society and the Canadian Pain Society. I’m a member of the latter organization.
Again, we aren't endorsing any of these treatments. Judge them on their merits and make up your own mind.
For more information, check this out.
Previous Comments (2)
Thanks for the show on chronic pain. Here are some of my observations: Re: health care professionals
On visits I have made to physicians I am always asked to describe the pain "on a scale of 1 - 10 with 10 being the worst pain you've ever felt" . . . I'm not sure why health care professionals want this information. Is there some "magic number" that I could provide that would mean the pain is serious?
Better questions would be: Does the pain interfere with your daily activities? Does the pain interfere with your work or social life? Do you frequently lose sleep because of the pain?
And regarding pain that keeps you awake at night . Health care professionals seem to lump all issues regarding sleeplessness together. Lack of sleep due to pain is an entirely different issue.
A big part of managing chronic pain is keeping your mind strong and what I think of as "going toe to toe" with the pain. When you lack sleep this is really tough to accomplish. It's a bigger issue than just insomnia.
What works for me:
Don't think about what life was like before pain. Try to accept what is and go on from there.
If you feel you are less able to cope after attending a health care professional than you were before you attended one, stop attending that health care professional. I know this seems like a "no brainer" but it was a tough one for me to accept!
Be grateful for the lessons that pain has taught . . .
- I have a far higher tolerance for pain now. A recent kidney stone didn't phase me at all.
- I used to be concerned about the possibility of all sorts of health issues the media and others warn us about - cancer, H1N1 etc. I was such a "compliant patient", really just a worrier! Chronic pain has helped me take charge of my own life and recognize the limits of "modern medicine".
-If I have a day, an hour, or even 5 minutes when the pain is less I truly enjoy it! (although I am still grumpy and whiny as anything when the pain is what I call "skritchy" - my husband is a saint)
Again thanks for the show. Hope you have a Merry Christmas!Robin Endsin, December 18, 2009 11:04 AM
I eagerly listen to your show every week but this weeks topic affects me every day. I was 31 when I was diagnosed with Ankylosing Spondylitis. The pain that I have experienced from this disease has taken so much from me, I lost my career as an R.N., I lost my ability to lead a normal life. I have not worked for 8 years and my pain has been the same since it started. I have been on many drugs over the years with minimal results. I have tried every TNF blocker there is and they did not do anything for me either. My current medicine routine has me on large doses of Oxycontin which helps me function and keep me off the couch. I also cannot get off Prednisone because of the pain it causes me. I have this wonderful disease as a side effect of my Crohns disease. My Crohns disease is well controlled but my pain is not.
I am currently enrolled in the pain clinic in Winnipeg, again with minimal results. I have known about the several implants that have helped many people with their pain and I can only dream of waking up one day and being pain free.
My children were very young when I was diagnosed and it saddens me that they do not know what I was like before this awful disease took hold of my life. I am honest with my children about my diseases and they help out very well but it still makes me very sad when my 12 year old daughter has to tie my boot laces for me because I cannot get down there to do it most days. This upsets me the most when my children are affected by this disease as well. They should have a healthy mom not a sick one.They deserve better. My son, who is now 10 has one wish for me and it has not changed over the years, he wants me to be able to chase him. Pretty simple dream but it is one that I cannot fulfill.
There is only one good thing that has come out of this and I see it as the most important one, is that I have been home with my kids for 8 years now, just like a stay at home mom and the time that I have had with them to be there all the time is absolutely priceless.
I still have hope that one day I will have less pain but it is getting harder and harder to go on like this, everything that I do is a chore and I am so tired of being sick and tired. My dream is to wake up and not still be exhausted.
The fatigue and the constant pain are in control of my life, not me.
I would love the chance to try one of the implants that have changed others lives but do not know where to go. The doctor that I see at the pain clinic is not fond of them but I see it as a chance to be free from this pain.
Just one more thing, I want to thank you for taking the time to talk about these two horrible words, chronic pain,and you were bang on when you stated that not many doctor's know what to do about it. I have been treated as a drug seeker and an addict but all I want is to be, not free of pain but to be able to live a more normal life.
Thanks again, Dr. Goldman for caring about those who suffer, it means a great deal to have someone understand what I am going through.
Darlene MartelleDarlene Martelle, December 19, 2009 11:42 AM