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The pain had come out of nowhere. At fifty she was a successful woman in a great relationship who swam competitively. She hadn’t experienced any injury, yet the burning, stabbing pain running from the back of her neck to her shoulder was driving her nuts.“I will argue that lack of adequate pain control is one of the most urgent health problems in America.” Judy Foreman
She hadn’t known such pain was even possible. The slightest mistake – the slightest move in the wrong direction – could leave her gasping with pain. Simply changing from a sitting position on the bed to lying down was excruciating.
The good news was that the doctors eventually found something. An MRI found near-herniated discs, spondylolisthesis, bone spurs, and arthritis in her neck. Over-active cervical nerves were causing the trapezius muscle in her left shoulder and neck to spasm and twist her head toward her shoulder. The result was a searing, burning nerve pain that ran from her neck to her shoulder. It felt, she said, like acid was dripping straight onto her nerve.
Her introduction to pain relief in the world of medicine was so shattering that it prompted her to do something she’d never done before - write a book - "A Nation in Pain: Healing Our Biggest Health Problem". I found this comprehensive overview of the problem of pain at eye-opening. Foreman’s ability to present pain in an understandable fashion while doing impressively thorough analyses based on study evidence was impressive.
A Nation in Pain
“... there is an appalling mismatch between what people in pain need and what doctors know.” Judy Foreman
Over 100 million Americans live in chronic pain. Perhaps ten percent of them can’t function because of it. Some are medical professionals whose whose disillusionment with the medical system is, if anything, greater because they expected so much more. One surgeon with shingles tried to cut out a nerve in his back and ended up in the emergency room. Another doctor who developed complex regional pain syndrome (CRPS) had to self-diagnose herself and use patient websites to research treatment options. All were shocked by how little help they received from their colleagues, and how quickly they felt abandoned.
If they’d thought about it, though, they might not have been. They, after all, had learned almost nothing about pain in medical school. One study found that, out of the thousands of hours of instruction, medical students got from 8 to 16 hours on pain. Only four medical schools in the U.S. require a course on pain to be taken at all.
The problem is that pain, for all the well, pain and costs it is responsible for, is almost like an afterthought in the medical field. The National Institutes of Health (NIH) has institutes dedicated to studying almost everything, but none dedicated to chronic pain. With no institutional base of support chronic pain gets about one percent of NIH funding. (Fibromyalgia is considered to be the quintessential pain disorder but receives less funding per patient even than chronic fatigue syndrome).
Since the 3-4,000 pain specialists in the U.S. can’t begin to attend to the millions of people in chronic pain, the burden falls mostly on woefully unprepared primary care doctors. That burden is going to increase dramatically. As our population ages the “pain load” both on the medical establishments and on its citizens is only going to get heavier in the U.S.
Since the path to chronic pain invariable begins with acute pain, it’s vital that doctors treat acute pain appropriately – but only about half of people undergoing surgery feel they get satisfactory pain relief. After suffering a devastating leg injury, one pain doctor got the emergency medical team to shoot him up with far more pain-killing drugs than they would have otherwise.
It turns out that chronic pain -defined as pain lasting three months or longer - is a devilishly tricky subject. Now known to be a disease in its own right, chronic pain produces changes in our nervous and immune systems and in how we feel, think and behave. Many pain syndromes such as fibromyalgia and chronic fatigue syndrome aren’t associated with any obvious, physical injury. Six different parts of the brain contribute to producing pain in a major way (and more are involved) and four different kinds of pain exist.
In chronic pain the nerves become more and responsive to pain signals. Immune cells in the brain called microglial cells pump out cytokines that further sensitize the nerves As many people with FM know if this sensitization becomes severe enough the nerves in the spinal cord will start firing in the absence of any damage to the body at all. Increased levels of a neurotransmitter called glutamate tells nerve cells to flood their surface with NMDA receptors that response to pain signals. In some people the excitatory state brain cells have been put into causes substantial numbers of them to burn out.
Chronic pain, then, results from a wholesale resetting of the central nervous and immune systems; it’s a disease that can touches virtually aspect of our existence.
The Meaning of Pain
Any suggestion that we might be inadvertently adding to our pain is upsetting. Why would anyone want to add to their pain? The answer is that no one consciously wants to but that our brain is structured makes it almost inevitable. Judy Foreman reacted with anger when first her doctor and then her psychiatrist boyfriend suggested that a little behavioral modification could help.
She wasn’t the cause of her pain, her pain, she said, was in her neck not in her mind. It turns out that chronic pain is such a fundamental process that it affects everything from her brain to her neck to her behavior and while behavioral modification didn’t cure her it did help.
The truth is that an emotional response comes baked in with pain in humans. The part of the brain (the anterior cingulate) that processes pain signals also happens to regulate our emotions. Pain - the fundamental sensation that it is – not surprisingly has a strong emotional component and learning how to deal with that component successfully can be quite helpful. (A recent study found that a chemical induces both anxiety and neuropathic pain). It can make the difference between really suffering with pain or just having it without the emotional turmoil it often brings.
(Our minds work in ways in which makes chronic pain particularly problematic. We determine how to act in a situation by comparing out current situation with situations similar to it that have happened in the past. If you've been ill long enough that your past is probably so filled with pain that virtually every situation will be anticipated to be a recipe pain inducing. That’s a recipe for hunkering down and not doing anything. That’s a good idea if you have an acute injury but as we’ll see maybe not a good idea for chronic pain.)
Negative emotions (anger, frustration, upset, fear, etc.), of course, are a natural outcome of being in pain. The problem is that study after study has shown that negative emotions tend to increase ones pain level while positive emotions (hope, love, joy, gratitude) reduce it.
It makes sense. If all you can see is darkness ahead, you'll be depressed AND you'll be in more pain. If you see a positive future ahead, though, you'll probably be in less pain. Nobody is saying this is easy, by the way - but it does work.
(Psychiatrists - ever eager to see, well, psychiatry at work, posited for years that depression probably preceded chronic pain; i.e. a person started experiencing pain, got depressed and it was the depression that pushed them into the chronic pain state. It’s true that depression increases pain but depression is now thought to result from being in pain. Some antidepressants can be helpful in reducing both depression and pain. In fact, some antidepressants can help people in pain who are not depressed.)
The idea that the placebo wears off over time is a myth as well. It can last as long as any drug.
The placebo effect - which posits a reasonable future is possible- obviously won’t work when another major pain pitfall – catastrophizing - which reasons that life is intolerable and will remain that way – is going full bore. Judy Foreman was doing great at the time she got ill; she was healthy, she was successful, she was in a good relationship, but she acknowledged that once her pain got started that even she became a world-class catastrophizer.
It turns out that it doesn’t take a mood disorder for a person to be a good catastrophizer. Simply putting a human being in chronic pain is a pretty good recipe for catastrophizing. If you happen to be female, that helps as well. (For some reason (perhaps evolutionary?) women tend to catastrophize more. In fact, some evidence suggests that women's increased pain sensitivity is in part due to their tendency to catastrophize more.
- Do you catastrophize? Check out a Pain Catastrophizing Scale here
Judy Foreman ended up taking a pretty typical mind/body approach to her pain; first she learned how the pain pathways in the brain work, then she practiced relaxation techniques (see "The Relaxation Response" by Herbert Benson), learned how to pace, made sure that she pampered herself and did things that brought her joy, and used CBT to change her negative thoughts to neutral or even positive ones. (She noted that gains from CBT tended to modest and didn't apply to everyone. A meta-analysis indicated that it provided significant gains to 1/3rd - 1/7th of pain patients).
The Opioid Wars
In "The Opioid Wars I and II" Foreman takes on a crisis the medical profession is generating all on its own. First, she related the horrifying story a former football player whose unrelenting head pain resulted in the loss of his career, his house, his car, his sense of himself as a father and provider and finally his dignity and self-respect. He said he felt like his head would explode. Labeled by his doctors as a drug abuser, he enrolled in a drug abuse program that made no difference. Despondent he tried several times to kill himself. Finally he happened upon a doctor whose subsequent tests found two aneurysms in his brain that were causing his head pain.
That story highlights the two opioid epidemics Foreman believes exist; the one you hear about in the news - the abuse of opioid drugs by people - and the epidemic of untreated pain caused in part by the restrictions put on opioid use.
Foreman, argues, though, that the problem has been overblown. Yes, it's true that over 15,000 opioid-related deaths occur every year but so do 443,000 smoking related and 80,000 alcohol related deaths. Simple over the counter anti-inflammatory drugs (NSAIDS) are linked to 7-10,000 deaths every year.
Some doctors believe the regulatory agencies have gone too far. Dr. Charles Lapp recently penned an editorial accusing the authorities of creating a policy that will inevitably result in leaving some patients in horrific pain.
Despite the fact that one study found that doctors face very, very, (very) little risk of being sanctioned (only 700 out of 750,000 were in one year), one prominently featured story in the media of a doctor - by all rights a good doctor - who went to prison, then successfully appealed, then was sent back to prison, and is now apparently out, scared the heck out of doctors. (Talk about catastrophism.) They've reacted to the new regulations with extreme caution; some are not willing to prescribe opioids at all. Others cut off their patients in pain at the first hint of what they believe is drug-seeking behavior.
Fibromyalgia has its own opioid trials. It took just one 2007 34-person (unreplicated) study which found a reduction in opioid receptors to generate the apparently widespread idea that opioids don't work in fibromyalgia. Contrast that study finding, though, to a recent patient survey which found opioids to be far more effective in reducing pain in FM than the three FDA approved drugs for the disease.
In the end Foreman makes it clear that there are no easy answers to the opioid issue. Opioids can and have caused harm. While the risk of addiction appears to have greatly over stated it can be nightmarish when it occurs. (It turns out that screening people for other kinds of addiction greatly reduces rates of opioid addiction. On the other hand, studies suggest that many people on opioids under-medicate themselves. Interestingly, people in the most pain - who take the highest doses of opioids - are at the highest risk of addiction.
Another chapter goes deep into using naloxone and other drugs to overcome opiate addiction, and a fine-tuned way of rotating opioids to reduce tolerance and increase their effectiveness.
The Immune Angle
Foreman focused on a hot topic - the glial cells - in the immune chapter. When any of a number of substances called "alarmins" land on a glial cell, the cells pump out pro-inflammatory cytokines that send the pain producing pathways leading to the brain into a tizzy. A variety of substances may be able to calm these glial cells and the pain producing pathways down but the road to a glial cell inhibiting drug has been rocky. One drug, propentofylline, which had successfully blocked glial cell activity and reduced pain in rodents, provided a sobering lesson in how different animals are from humans. Despite years of study in rodents propentofylline failed to reduce pain in a 12 million dollar trial in humans. Researchers concluded that glial cells in the humans and rodents simply work differently.
Ibudilast is another promising glial cell inhibitor. It's reduced pain in several rodent studies, and "freezing behavior" in rats with traumatic brain injury. It failed to produce results in a medication overuse headache trial but is currently undergoing clinical trials in migraine, multiple sclerosis and addiction.
Foreman comes down hard on the federal government's designation of cannabis as a Schedule I substance: an addictive plant with no medical value. The federal designation aside, it appears that we’re evolutionarily adapted to use cannabis to reduce pain and to relax; our cells contain more endocannabanoid receptors than just about any others.
In fact, some research suggests that people with low endocannabanoid levels may be more susceptible to anxiety and pain and diseases such fibromyalgia, migraine and irritable bowel syndrome. (Given that it's perhaps no surprise that medical marijuana has taken top place in several fibromyalgia surveys. Nothing - including low dose naltrexone - has come close to being as effective. ) Studies suggesting that cannabis may be the most effective in the most difficult kind of pain to treat - chronic pain - cry out for greatly expanded research.
The Schedule I designation, however, which requires that researchers get approval from three different agencies, has made it virtually impossible to effectively study cannabis in the U.S. Despite organizations such as the American Academy of Family Physicians and the American Public Health Association supporting the use of medical marijuana, that federal government renewed cannabis's Schedule I designation this year. The good news, though, is that the feds, finally acknowledged the plant's potential and greatly expanded access researchers access to it.
The extensive chapter on medical marijuana, which covers the THC/CBD question, the possible risks involved and more is worth the price of the book alone.
Finally, Foreman looks at other options for pain relief including electrical stimulation devices such as TENS units, spinal cord stimulation, transcranial magnetic stimulation, injections (nerve blocks, steroids, botox, trigger-point) nerve ablation, surgery and emerging pain drugs (resolvin, adenosine) as well as the pluses and minuses of NSAIDS. Anticonvulsants and antidepressant are, surprisingly, given short shrift given how commonly they are used in FM to treat pain. Pain pumps are dealt with quickly as well.
She covers complementary and alternative medicine options including acupuncture, massage, energy healing, cranial sacral therapy, chiropractic, diet and vitamins. The section on acupuncture is superbly done as Foreman follows the twists and turns of research findings on this option.
Some emerging options - perhaps not well-known at the time of the book's publication - such as ion channel blocking drugs, low dose naltrexone and vagus nerve stimulation - are not or are barely covered. Diet is given short shrift as well.
Exercise- "The Real Magic Bullet"
Foreman can't say enough about exercise. With her bone spurs, her degenerating and out of position vertebrae, and the inflamed small nerves in her neck sending her into unbearable pain (10 out of 10 at the slightest wrong move, Foreman seemed like the last candidate for exercise. Her participation at the
Spine Center’s Spine Rehabilitation Program (otherwise known as the New England Baptist boot camp) changed her view of both exercise and pain.
The program uses "intensive exercise" to rehabilitate patients with spinal problems. Its creed is that pain does not equal tissue damage; in fact, Foreman quotes Rainville stating that "there is no scientific evidence that activity and exercises are harmful, or that pain-inducing activity must be avoided" in his spine patients.
Foreman cites study after study indicating that at the very least exercise provides some benefit and sometimes quite a bit of benefit in diseases like fibromyalgia, arthritis and chronic low back pain.
This is despite the fact that people in chronic pain avoid exercise for a reason - it hurts when you move. Too much rest, however, leads to deconditioning and weakened muscles. Judy Foreman credits much her recovery from her intense neck pain - she's back swimming, kayaking and hitting the gym again - to her participation in the boot camp and the work of her physical therapist.
Foreman's neck, by the way, still has bone spurs and vertebrae problems - she's just not in pain anymore.
It should be noted that Foreman's neck pain is different from the kind of widespread pain seen in FM. While many studies in fibromyalgia have shown exercise to be helpful in fibromyalgia, the exercise used in the studies tends to be pretty mild.
Pain remains a costly and poorly treated problem. Foreman argues that the U.S. has a moral obligation to better fund pain research, and that the failure to find ways to better treat pain could constitute “torture by omission”. Inadequate pain care one activist believes constitutes “cruel, degrading and inhuman treatment”. Foreman is not saying that other diseases are less important than pain; she is saying that not giving the chronic pain epidemic in the U.S. its due is morally and perhaps even legally wrong.
The federal response to the IOM report’s staggering findings of pain in the U.S. appears to have consisted of an agreement to tracking pain research funding and creating two committees with miniscule budgets and no authority. The fact that single most expensive “disease” in the U.S. does not have an Institute or even a Center devoted to its study at the NIH is beyond weird. The NIH is composed of 27 Institutes and Centers including Institutes on the Eye, Aging, Alcohol Abuse, Biomedical Engineering, Childhood Health, Deafness, Drug Abuse, Environmental Health, Minority Health, Nursing Research, etc. – but no Institute on Pain.
People in pain have to take responsibility for their inaction as well. A White House Petition to implement a National Pain Strategy collared an embarrassing 11,000 of the needed 100,000 signatures to have the White House respond. Just this month, on the other hand, a petition asking the DEA to reconsider its designation of Kratom as an illegal substance quickly reached 132,000 signatures.
That demonstrated that the need is out there but the political will to take on chronic pain as a stand alone issue is not. Until the pain community comes together like the AIDS groups did and the chronic fatigue syndrome (ME/CFS) community is starting to, the changes needed may not occur.
- Check Out Health Rising's Pain Resource section