By Bob Aronson
Chronic pain is of major interest to me because I suffer from it and have been denied treatment as well. I have an established record as a sufferer and one who has tried a wide range of alternatives to the “controlled substances” the medical profession is so reluctant to prescribe. I understand that we have a serious addiction problem in this country and that a very tiny minority of physicians over-prescribe controlled substances like Vicodin and Oxycodone.
I also understand that the U.S. Food and Drug Administration (FDA) and the Drug Enforcement Administration (DEA) are cracking down hard on this activity but in the process are intimidating the entire medical profession in order to rout out the few who recklessly dispense narcotics to nearly anyone who wants them. I know from first-hand experience and from the testimony of others that many physicians are so intimidated they refuse to prescribe pain killing narcotics to anyone. I get all that and outline it in detail in this post.
Conversely, I believe that physicians have a unique opportunity and even an ethical responsibility to act as patient advocates rather than to retreat under fire and refuse treatment to those with legitimate pain issues. The oath that says, “First, do no harm,” is broken any time relief is available but refused not because there is evidence that the patient is being dishonest but because the physician fears investigation. That to me is unconscionable and a terrible disservice to patients. Too many doctors at too many institutions have been intimidated by the threat of investigation and it is patients in pain who suffer as a result.
The publication, Scientific American says this of chronic pain: “Anyone living with chronic pain knows that it amounts to much more than an unpleasant bodily sensation. Fuzzy thinking, faulty memory, anxiety and depression often accompany long-term pain, suggesting that the condition is more of a whole-brain disorder than simply pain signaling gone haywire. New research from Northwestern University reveals a possible cause: an impaired hippocampus, a region critical for learning, memory and emotional processing (you can read more by clicking on this link) http://www.scientificamerican.com/article.cfm?id=how-chronic-pain-affects-memory-mood
While chronic pain is a recognized medical condition that often can only be treated with controlled substances it is becoming more and more difficult to find physicians who will prescribe them. The reasons? Abuse, misuse, suicides, crime, greed and among physicians fear and intimidation.On October 24, 2013 this headline greeted readers when they picked up their morning paper; FDA Crackdowns on Painkiller DrugsThe move was prompted by one drug in particular — Hydrocodone otherwise known as Vicodin the highly addictive painkiller that has grown into the most widely prescribed drug in the U.S.
In a major policy shift, the agency said in an online notice that hydrocodone containing drugs should be subject to the same restrictions as other narcotic drugs like oxycodone and morphine. What this means is that the regulating agencies first made it difficult to get the major pain killers and now are restricting lesser ones as well. The question is where will it stop and how will chronic pain sufferers be affected? History tells us that actions like this will cause fewer prescriptions to be written but that many patients who legitimately need these drugs will be caught up in the dragnet and lose their relief.The latest move comes more than a decade after the Drug Enforcement Administration first asked the FDA to reclassify hydrocodone so that it would be subject to the same restrictions as other addictive painkilling drugs. . Florida is or was at the epicenter of an explosion in narcotics prescriptions written by unscrupulous physicians who provided narcotics to almost anyone for exorbitant prices. Pharmacies were caught playing the game with these docs and while the action by the feds reduced the number of pill mills, it also caused great agony for those who suffer from chronic pain and could no longer get relief. (
I will return to the legal and ethical conundrums faced by physicians and pharmacists shortly but let’s step back for just a moment or two to look at the human side. The millions of people who suffer from chronic pain and who depend on controlled substances to provide them with some semblance of human life…and I’m one of them.
The American Pain Foundation says that chronic pain is a complex condition that affects almost 50 million Americans. Even after decades of research, chronic pain remains poorly understood and hard to control.
Chronic pain can be severe, so severe it has driven some to take their own lives. It is a major problem and often even the most potent of pain killers has only a minimal effect. Here’s how two patients describe their daily battle with chronic pain.“It feels as though someone has stuck a white hot poker into the bones at the top of my spine and the base of my neck. The pain radiates to both shoulders and down my back. I cannot stand without help and cannot sit in any one position for very long. Turning my head is too painful to even contemplate. Like a master torturer the pain seems to know just where to attack next to make me confess and confess I would – to anything at all if it would just go away for a few minutes.” That’s the testimony of a Frank R. a Michigan man suffering from chronic pain brought on by osteoarthritis. In the state of Virginia Mary T. says this. “It is my lower back and both of my legs. The pain is not intense it is beyond that and it is unrelenting. Sometimes I am so tired out from battling pain all night I will just sit and cry but the pain monster takes no pity. I cannot walk without support, so now I have a cane which helps me get around but the pain doesn’t want me to walk and has begun attacking the arm and hand I use to hold the cane. Death would be a relief; I can’t go on living like this.”
Frank and Mary are fairly typical chronic pain sufferers. Both take narcotics to manage the pain neither gets much relief anymore because of building high tolerances for opiates. Both have tried almost everything modern medicine has to offer and narcotics are all that is left to help them but because tolerances go up, one is forced to take more and more of the narcotic until finally the pain subsides – it doesn’t go away it just backs off for a while but the massive doses of narcotics can leave the patient in an almost Zombie like state, unable to concentrate or focus on any task and sleepy, so sleepy that some days patients don’t bother to get out of bed. The result is that while the pain may be minimized so is the patient’s quality of life.
A survey by the American Academy of Pain Medicine found that even comprehensive treatment with painkilling prescription drugs helps, on average, only about 58% of people with chronic pain.
What causes chronic pain, and what can you do about it?
Some cases of chronic pain can be traced to a specific injury that has long since healed. Other cases have no apparent cause — no prior injury and an absence of underlying tissue damage. However, many cases of chronic pain are related to these conditions:
Treating your underlying condition is important. But often that does not resolve the pain issue. Increasingly, doctors consider chronic pain a condition of its own, requiring pain treatment that addresses the patient’s physical and psychological health.
Chronic pain can leave a person almost unable to function and the medical profession doesn’t seem to know what to do about it because they are getting mixed messages from state and federal governments.
On one hand government says, ”Treat the patient, give them what they need to manage pain,” and on the other the Feds in particular are saying, “There are too many greedy quacks out there handing out narcotics like Pez dispensers and it has to stop.” Here’s why:
Earlier this year the Centers for Disease Control and Prevention reported that prescription painkiller overdose deaths among women increased about fivefold between 1999 and 2010. Among men, such deaths rose about 3.5-fold. The rise in both death rates is closely tied to a boom in the overall use of prescribed painkillers.
The result is that many major medical centers are playing it safe and prescribing narcotics for short term relief following surgeries and a few other specific situations like terminal cancer victims but otherwise are telling patients to see their primary physician for pain relief. The reason cited by many medical centers is that the laws are incredibly complex and therefore vague. For example, here’s just a short section of New York law (you can read all of it here http://www.medscape.com/resource/opioid/opioid-newyork )License. Only practitioners who are properly licensed and registered may issue a prescription for a controlled substance. Section 80.64 contains the full information about who may issue controlled substances. Purpose of a Prescription. A prescription is the instrument to legalize an ultimate user’s possession of a controlled substance. To be effective then, a controlled substance prescription should be issued for legitimate medical purposes only. Section 80.65 contains the full text. Initial and Corresponding Responsibilities: Prescriber and Pharmacist. The responsibility for the proper prescribing and dispensing of controlled substances is on the physician, dentist, podiatrist, veterinarian, or other authorized practitioner, but a corresponding liability rests with the pharmacist who fills the prescription. A practitioner cannot supply prescriptions to maintain an addict or habitual user of controlled substances. There are some exceptions and practitioners should read the New York law very carefully. An order purporting to be a prescription issued to an addict or habitual user of controlled substances not in the course of professional treatment but for the purpose of providing the user with narcotics or other controlled substances sufficient to keep him or her comfortable by maintaining his or her customary use is not a prescription within the meaning of New York law. It is no wonder physicians are reluctant to prescribe opiates, they fear losing their licenses. In the preceding paragraph physicians are told they cannot provide controlled substances to addicts or habitual users but many people with chronic pain ARE habitual users and they may be addicted as well, and the New York law could easily be interpreted to read that prescribing controlled substances to chronic pain sufferers is a violation of the law. In a document with the unwieldy title of; Use, Abuse, Misuses, and Disposal of Prescription Pain Medication Time Tool Clinical Reference, The American College of Preventive Medicine (ACPM) states its position on the patient’s right to pain relief very clearly but the issue gets clouded in the “Challenges” section. It is easy to see why many physicians find it easier to “pass the buck” by saying, “See your primary care physician for narcotics,” or, “See a physician who specializes in pain for treatment with controlled substances (for the full transcript and more click on this link: http://www.acpm.org/?UseAbuseRxClinRef
Some physicians are so nervous about prescribing painkillers that they just flat out refuse to do so. I had it happen to me at of all places a well-known pain clinic. These physicians fail to recognize chronic pain for what it is and want to find the underlying condition that causes the pain but the fact is the pain is the underlying condition.J. Donald Schumacher President and CEO of the National Hospice and Palliative Care Organization says, “According to a recent report from the Institute of Medicine, chronic pain itself can be the problem. Such pain can cause changes in the nervous system that worsen over time — even after the original source of the pain has gone away.
Because many doctors are not properly trained in the study of chronic pain, patients often suffer unnecessarily. One study of nursing home residents with chronic pain found that 44 percent were not getting any treatment at all.
In some cases, the need for pain treatment may not be obvious. Older patients, especially those with dementia, often struggle to communicate their needs.
Yet according to a report from the Hartford Institute of Geriatric Nursing at New York University, the burden to communicate with patients who may be in pain does not rest with the patients. Clinicians must take on that duty. They can do so by learning to identify non-verbal behaviors, such as “agitation, restlessness, aggression, and combativeness,” which “are often an expression of unmet needs.”
Old age must not become an excuse for the failure to pursue effective treatment for pain.
Of course, patients must assume some responsibility for treating their pain, too. Approximately 50 percent of patients do not take their medication as prescribed. Many mistakenly wait for pain to recur before administering another dose. Such on-again, off-again treatment just results in cycles of pain — rather than preventing it altogether by maintaining adequate levels of medication in the bloodstream.”
Schumacher also believes this, “Whatever the condition causing the pain, the person best equipped to take the lead in finding the proper treatment is the sufferer. People know their own bodies, and they can judge when medications are inducing unwanted side-effects.
No one deserves to be incapacitated by chronic pain. The means to alleviate it are available. All that’s required is the will to find the right treatment.”
So what else can patients do to get relief when the system seems obsessed with denying it?In a Web MD Story, Rollin M. Gallagher, MD, MPH, director of pain management at the Philadelphia VA Medical Center said, “Today’s pain specialists understand how the sensation of pain occurs — how the nervous system, including the spinal cord, interacts with the brain to create that sensation. Insights into the neurotransmitter system — the chemical messengers that pass nerve signals — have opened the door for important new modes of chronic pain relief, he explains. In recent years, scientists have learned how to manipulate those chemical messengers to change the way they interact with the brain’s signals. That’s led to use of antidepressants and other drugs that work with specific brain chemicals that affect emotions, and help with perception of pain. We now have a whole new host of medications that are very effective for chronic pain relief,” Gallagher tells WebMD. http://www.webmd.com/pain-management/features/chronic-pain-relief-new-treatments
In November of 2011 Medtronic Corporation the manufacturer of a wide variety of medical devices announced a new treatment for chronic pain. In a news release the Minnesota corporation said, “The U.S. Food and Drug Administration (FDA) has approved AdaptiveStim™ with RestoreSensor™ neurostimulation system, the first and only chronic pain treatment that harnesses motion sensor technology found in smart phones and computer gaming systems to provide effective pain relief and convenience by automatically adapting stimulation levels to the needs of people with chronic back and/or leg pain.
The news release went on to say, “Data from the U.S. RestoreSensor clinical trial demonstrate that the AdaptiveStim with RestoreSensor neurostimulator provides effective pain relief and convenience. At the end of the study, 86.5 percent of study participants with chronic pain, who were included in an intent-to-treat analysis (n=74), experienced somewhat better or much better pain relief with no loss of convenience, or somewhat more or much more convenience with no loss of pain relief, when the device’s AdaptiveStim technology was turned on, compared to a control period when the participants manually adjusted neurostimulation settings using a patient programmer. With AdaptiveStim, study participants reported functional improvements, including improved comfort during position changes (80.3 percent).”
Not to be outdone, Boston Scientific is also in the chronic pain management business On April 12 of this year they announced, “Boston Scientific Corporation (NYSE: BSX) has received approval by the U.S. Food and Drug Administration and is beginning a limited launch of the Precision Spectra Spinal Cord Stimulator (SCS) System. The Precision Spectra System is the world’s first and only SCS system with Illumina 3D™ software and 32 contacts, and is designed to provide improved pain relief to a wide range of patients who suffer from chronic pain.
The news release added, “The Precision Spectra System represents a paradigm shift in spinal cord stimulation,” said Giancarlo Barolat, M.D., medical director of Barolat Neuroscience in Denver. “The Illumina 3D Software is the first SCS programming technology based on advanced anatomical and scientific principles. When combined with 32 contacts and four lead ports—twice that of any other SCS system—the Precision Spectra technology gives physicians more flexibility to customize therapy for patients.”
Medications for Treating Pain http://www.livestrong.org/we-can-help/preparing-yourself/finding-a-counselor/
Cancer pain is often treated with one or more medications. If you have concerns about taking certain medication, discuss this with your health care provider and pharmacist. Ask about long-term medication usage and side effects, such as allergies, constipation, sedation, memory impairment or other reactions.
Complementary Pain Relief Options
Complementary (also called alternative or holistic medicine) treatments include massage, acupuncture, meditation, biofeedback or hypnosis. For some types of pain, heating pads, hot or cold packs and massage may be soothing and can help to reduce pain.
A health care provider may recommend counseling to help a patient cope with their pain or other distressing symptoms. Stress can make pain worse. It can also lessen the effect of pain management medications.
To learn more about these types of therapies, contact the National Cancer Institute. Talk with your health care team if you are interested in adding a complementary method of treatment. Let them know about supplements and herbs you want to try. Some types of complementary treatments can interfere with treatments prescribed by your provider.
Stem Cell Therapy
While there is a great deal of anecdotal evidence that stem cell therapy has beneficial applications there is little real medical evidence and many researchers, physicians and regulators still view much of stem cell therapy as modern day quackery.
I know you can find many people who have had stem cell therapy and swear by it but to the medical community that is still anecdotal evidence unsupported by clinical studies and therefore “iffy” or even dangerous. It is important to note that even among physicians who are among the most trusted members of our society, there are those whose greed supersedes professional ethics. These charlatans prey on a trusting public and can do more harm than good. An example is the FDA and DEA crackdown on hundreds of physicians who indiscriminately prescribe controlled substances to anyone who wants them. The best advice always is, “Buyer beware!”
In researching the subject for this blog I was struck again and again by conflicting opinions which convinced me that it is nearly impossible for a lay person like me to sort out the science from the pseudo-science and offer sound advice. I am simply not qualified to do so which means the burden falls back on the reader and depends on the illness in question, its severity and what has been done to treat it in the past.
I can only suggest this. There are claims being made by clinics all over the world about successful stem cell therapies covering everything from bad knees to multiple sclerosis. If you are seeking such therapy start out by talking to your primary care physician and getting his/her advice. If still not satisfied look for a respected specialist in the field at a major medical center and finally if you still need more information, look up a highly respected medical school that also does research into stem cell therapy and inquire with them about your concerns. I would avoid calling the stem cell clinics that sell the treatment because there is no way you will get an objective response from them.
In December of 2012 I published a blog on the issue of stem cell therapy titled Stem Cell Therapy – Some Truth, lots of Snake Oil. http://bobsnewheart.wordpress.com/2012/12/03/stem-cell-therapy-some-truth-lots-of-snake-oil/
I spent a considerable amount of time researching the issue before posting and little has changed since then. If Stem Cell therapy is a consideration for you please read it and click on the many links I have provided. They may not give you the answers you want but they will give you objective and accurate information. Ultimately the decision is yours and yours alone. The U.S. Food and Drug Administration (FDA) is still struggling with the stem cell issue and until they can sort it all out I would proceed with great caution.
As you can gather, there’s a lot of confusion and misleading information about stem cell therapy because research is really in its infancy. The International Society for Stem Cell Research (ISSCR) has a lot of information about stem cells and lists 10 things you should know about the subject on this link http://www.closerlookatstemcells.org/Top_10_Stem_Cell_Treatment_Facts.html
Here is just one of the ten.
4. Just because people say stem cells helped them doesn’t mean they did.
There are three main reasons why a person might feel better that are unrelated to the actual stem cell treatment: the ‘placebo effect’, accompanying treatments, and natural fluctuations of the disease or condition.
The intense desire or belief that a treatment will work can cause a person to feel like it has and to even experience positive physical changes, such as improved movement or less pain. This phenomenon is called the placebo effect. Even having a positive conversation with a doctor can cause a person to feel improvement. Likewise, other techniques offered along with stem cell treatment—such as changes to diet, relaxation, physical therapy, medication, etc.—may make a person feel better in a way that is unrelated to the stem cells. Also, the severity of symptoms of many conditions can change over time, resulting in either temporary improvement or decline, which can complicate the interpretation of the effectiveness of treatments.
These factors are so widespread that without testing in a controlled clinical study, where a group that receives a treatment is carefully compared against a group that does not receive this treatment, it is very difficult to determine the real effect of any therapy. Be wary of clinics that measure or advertise their results primarily through patient testimonials.
ISSCR offers a great deal more information on stem cell research and therapy on their home site at http://www.closerlookatstemcells.org/
Finally, Forbes magazine, admittedly very conservative in its approach to almost anything, ran this story about stem cells here’s an excerpt and a link. http://www.forbes.com/sites/gerganakoleva/2012/02/19/stem-cells-fda-and-the-edge-of-science-three-expert-viewpoints/
“The question for us as a society is when something done at the edge of clinical care becomes something we want to study,” Scott observed. “My feeling is that in many cases clinics are scrambling to get approval, but don’t have the gravitas that the clinical literature provides that would give comfort to a regulatory agency or even an advisory board to say ‘go ahead and do it.’ So until we have a better idea of what the adverse effects would be, these things are moving too quickly.”
Other Pain Treatment Options
Biofeedback is a method that uses the mind to help with pain. Breathing exercises, relaxation techniques, yoga, tai chi, qigong, visualization, meditation or guided imagery exercises may also be effective. Sometimes, talking with friends, laughing or listening to music can offer a helpful distraction from pain.
For severe pain, a technique called a nerve block is sometimes considered. This procedure may involve injecting a substance directly into or around a nerve or around the spinal cord. These procedures block damaged nerves from sending pain signals to the brain so that the pain will not be felt. Nerve blocks may work to control pain for people who have advanced cancer or very painful nerve conditions. However, there can be serious complications associated with these procedures.
Talk with your health care provider about the benefits and risks before any treatment to decide what is best for your situation. Every survivor responds differently to pain management strategies. Open communication with your health care team can help you decide together what will work best to manage your pain.
After considerable research Bob’s Newheart has come to the conclusion that while there are forces at play that would deny patients relief from chronic pain, there is also help available. Unfortunately the medical profession is more a part of the problem than the solution despite its protestations to the contrary. For any doctor to deny relief to a patient with legitimate pain is to us a violation of their oath.
Chronic pain is a medical reality that affects not only the body but the emotional stability of the patient as well. Any patient who says, “I cannot go on living like this,” and is denied relief for fear of being investigated is in desperate straits. When my pain specialist said to me, “I can’t give you narcotics, see your primary,” he was not only lying he was telling me he didn’t’ care about my pain.
Narcotics or controlled substances aren’t always the proper treatment but neither is denying these drugs to people who are in legitimate pain.-0-
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