Naltrexone was discovered in Long Island and in recent years it is being used for over 200 conditions, mostly auto-immune diseases and chronic pain. Apparently we make a natural morphine when asleep and if we add a small amount of naltrexone it triples the natural opiate. I have about 400 patients on it. It has little or no side effects, is very cheap and is non-addictive. See www.lowdosenaltrexone.org and recent research at www.ldnscience.org
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The Alexander Technique is an excellent approach for helping children with chronic pain. This process of psychophysical re-education, established by F. Matthias Alexander more than a century ago, is a safe and gentle means of teaching children that they have control over what’s happening in their bodies.
Instruction in the Alexander Technique (AT) offers youth of all ages strategies to counter fear and anxiety that may be present in anticipation of not only movement and exercise but also academic and social situations. AT is an embodied approach for developing self awareness and efficacy when responding to both external and internal stimuli that interfere with emotional and physical well-being.
My child lives with chronic pain caused by nerve damage due to chemotherapy. We have worked with some of the people mentioned in this article, and are grateful for their and others' help. While I agree with almost all of this piece, referring to physical exercise as "sports" to fit a catchy phrase does a great disservice to all those kids (and anyone) who works hard on physical activity but does not "play" a sport. Is yoga a sport? Walking on a treadmill? Doing PT and pushing beyond it? Could we just be a little less normative, please--for the sake of helping those in pain--my child has never liked sports much, and if managing chronic pain included SPORTS rather than physical exercise, he might have said no thanks.
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Doctors often assume that all ongoing pain is just the result of an overactive nervous system. As someone born with a disability who had lived in pain my entire life I can tell you that is not true and ignoring my pain and not thinking about it just led to a lot more pain. Yes I have ongoing pain but I also have ongoing damage to my body every single day, mostly from medical interventions done to me without my consent as a child. I was in pain all the time as a kid and I was still as active as possible and pushed myself very hard. Being active was not helpful. Not thinking about it was not helpful. Seeing therapists was not helpful. You can see in my MRIs the deterioriation of my bones. I am still told my many to just meditate or try yoga or biofeedback. Been there, done that, doesn't work for me. What works is responsibly taken pain medication and *decreasing* my activity. It took me almost 20 years to do that. If I had had pain medication and not pushed myself so hard as a kid I would probably have been much happier and be much better off now.
Yes some kids may have been sensitized to pain from a relatively minor issue and could benefit from techniques to learn to cope with that. Often the pain is a sign of an underlying issue that needs actual treatment not time with a psychologist. I have spoken to many people who've attended pain clinics where they are forced into therapy and taken off all pain meds. None of them ever felt any better for it.
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I see this more and more in my practice. Good article and more supports and devices are needed.
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It's upsetting that so much pain, especially the "neurologic pain" referenced as most prevalent, is CAUSED by underlying common, stealth vector-borne NEUROLOGIC infections such as Lyme and Bartonella, yet this is not addressed by the article or most physicians. A quick search on PubMed turns up over 300 studies that ref neurologic sx's and Lyme.
https://www.ncbi.nlm.nih.gov/pubmed/?term=neurologic+borrelia
GET TO THE ROOT AND GET RID OF PAIN FOR MANY KIDS AND ADULTS. Joint, muscular, GI, head pain and anxiety/ depression/ OCD are COMMON in Lyme, and Lyme and other TBDs are COMMON. Doctors are not seeing what's in front of them, are often uncurious, dismissive and dogmatic, and are prone to shutting down patients who challenge them with data in favor of shutting down symptoms with non-curative pills.
The field of medicine needs an overhaul and it should begin with properly ruling out infections before Rx'ing (often, longterm) psych drugs, immunosuppressants, and needless psychotherapy.
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@LusMa
I not sure what you mean by "neurologic pain" but I can tell you that in over 85% of cases of back pain and headaches, the two most common types of chronic pain, no one on the face of the earth knows what the cause of them is.
Yes, certain forms of infection can cause chronic pain and should be ruled out, but among cases of chronic pain they are pretty rare causes of the pain. Furthermore, virtually all those with infections have other signs and symptoms or a history consistent with infections.
And if anyone discovered the cause of most cases of chronic pain, you can bet it wouldn't be in some unnoticed article but on the front page of every newspaper in the country.
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@Steve The "neurologic pain" I referenced was a direct quote from the article. Headaches and back pain are high on the list of complaints for Lyme and other TBD sx's, and Lyme and TBD are high on the list of common infections that are frequently missed by doctors.
If we had good testing, or if doctors had a better understanding of these illnesses and how to properly clinically dx them, perhaps they would be recognized and treated more often. It is not correct that "virtually all those with infections have other signs and symptoms or a history consistent with infections." In some cases, of course, that's true. Yet headaches and/or body pain can be, and often are, the only symptoms of these stealth infections.
There is a long history of ignorance, denial and suppression about the truth of TBD. Pharma would lose billions on immunosuppressants, psych drugs, and yes, pain mgmt, if the truth were revealed. Look at the biggest advertiser for big media and you'll see why "every newspaper in the country" isn't covering this.
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@Steve From the horses's mouth...No $ in cures! Lots of $ in chronic illness: https://www.cnbc.com/2018/04/11/goldman-asks-is-curing-patients-a-sustainable-business-model.html
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We are successfully treating children and teens with chronic nerve pain using Calmare scrambler therapy. Patient outcomes (pain reduction) has been remarkable, particularly helping stricken patients regain mobility and resume normal lives. Scrambler therapy has no side effects, is painless and cleared by the FDA. And few know this therapy is available. https://calmaretherapynj.com/treatment-specialties/pediatric-chronic-pain/
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I am a therapist and I think the concept of the 4 S's is great. Returning to life seems vitally important. I work long term in psychotherapy with adults who often felt that being in pain was (often unconsciously) the most gratifying way they could obtain care from parents as a child. For them, the ongoing pattern of pain and the meaning one has to pain and the effects of secondary gain are real and can in my experience, have lasting effects on how they come to view themselves and relationships with other people. It is complicated and I am not suggesting this is true in all cases but when one starts to strongly identify as someone who needs care and perhaps more importantlyn receives it best when in pain.. powerful patterns can be laid down that are difficult to let go of in adulthood. I think addressing ways to have children learn how to cope while emphasizing a return to normal life if possible is useful. It may not be possible for all, but for some it can be potentially life changing. When pain becomes chronic early on and is linked to one's identity, it is very hard to let go of. My patients will often comment that it was real pain of course, but it was tethered to more complicated dynamics beyond the physical.
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There's a test called ACES designed to find the causes of young people's stress because early stress can delay and stop the important neurons from developing the body/ brain networks. in order for full physical and mental health to prosper, these neuron networks must function.
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@Ms
I think your bias towards assuming most people have a psychological basis for pain is damaging. Over the last decades I say 6 different therapists. Only was was competent in pain and disability. One, like you, told me I had adopted an identity as a sick person because I was seeking treatment for my well established medical condition. Another told me I should not have a test done because I needed to learn to "sit with my anxiety". I had the test done and it turns out I had a precancerous condition. If I had listened to the mental health counselor my specialist said they was a 50% chance I would have ended up with advanced cancer and died. I now have to have life ling monitoring but will hopefully avoid my grandfather's fate of dying painfully from advanced cancer. I ended up needing therapy to cope with the trauma from other therapists who spent their sessions making me doubt myself. I used to want to be a therapist. I spent two years as a volunteer crisis counselor but after the widespread incompetency I saw when seeking help I have a hard time imagining being part of such a profession. My experiences are not isolated. Mental health therapists need to realize that not everything is a mental health problem. We may seek support because of the disruption pain has caused us buy that does not mean our pain is psychological.
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@JJ I am sorry you had to go through this. When I referred to working with a person with an "identity" as a sick person I was not referring to persons seeking a rule out or a medical treatment for a possible medical illness. I was referring for example, to more long term, pervasive dynamics in their relationships to other people, often family members or friends and the complicated ways they implicitly and explicitly convey a mix of great need, (including emotional) and high expectation of others to make them feel better while holding themselves to a much lower standard of self care. Or in another example, struggling to name and cope with their own complex emotions, instead being more comfortable in the world of physical sensations, eg making emotions concrete. This does not sound like what you were experiencing.
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Patients with chronic pain are whole people, not hurting body parts. The interdisciplinary approach to chronic pain in the article works, and restores kids and young adults to normal or near-normal lives. If anyone tells you they have something that will cure a problem that has been present for months to years by the weekend - RUN! That is a person trying to sell you something or get you/your child hooked on something. Care providers who really care about you or your child will take time to explain why the interdisciplinary approach is important, and will not shy away from the truth: getting better from chronic pain is hard, takes work, and needs commitment. But they also will form a team to stand by you/your child.
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But therein lies the problem. Pediatric pain clinics struggle because the doctors and nurses, psychologist and physical therapists take the time, usually lots of it. Taking time with patients does not reimburse the same way procedures do, so most pediatric pain clinics lose money - thus, many hospitals do not support them much. Medicaids from out of state in our region refuse to pay for pediatric pain psychology, because they claim such services are available in their states - which is false. Pharmaceutical companies find ways to avoid studying medications in children because there is no market.
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The article provides great factual information, but we need to do better, and not let hospitals and insurance companies place profits over the well-being of our kids.
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@KG
Unfortunately what you describe is also true of pain programs for adults. Although every major study of which I am aware has highlighted the importance of providing psychologically based interventions for the treatment of chronic pain, most pain centers, including those at leading hospitals, focus almost entirely on procedures such as nerve blocks because they make money and docs can do a lot quickly. Of course, studies have shown that most of the people who receive them don't benefit from them. But hey, do you want medicine to be practiced according to what's best for patients or for the wallets of doctors.
Our 6yo boy was found to suffer from a painful, degenerative hip condition. It was very far along when diagnosed, and my son must have been in tremendous pain for up to 18 months prior, we now know. When we discussed it a year later, pain fully, constantly controlled, he asked, "Mom, what was that pain? I thought I had to hide it." I cried. It explained so much about his behavior and demeanor in those 18 months. Now we all know better.
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I tried many psychological based treatments for chronic pain. None of them really worked, all they really help with is ignoring pain, which often fails due to fatigue or illness.
My big issue with this, especially when treating children, is the one-size-fits-all mentality that pervades pain treatment of any kind. If, like me, a child gets no benefit from psychological treatments, they may be made to feel as if they have failed, when in fact it's the treatment which has failed for them personally. Even worse is if the treating physician has failed to diagnose a condition to explain the pain, which is just as easily a failure of the physician as it is for the patient to be psychosomatic. (When I was a teenage girl, many doctors thought all menstrual cramps were hysterical.)
It's the same as assuming anyone who takes narcotic pain meds for chronic pain is going to become an addict, or that the risk is too great to prescribe to any patient. Just not true.
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@rbytem
As most patients who undergo surgery for low back pain not only don't receive any benefit from them but also often are worsened by them, I would assume that you also have a similar view about them.
As to those patients who take opioids for chronic pain, the issue is that we have no good predictive factors, apart from a past history of substance abuse, for predicting who will abuse them. And if you believe this rarely if ever happens to those without such a history, studies have shown it is probably as many as 25% of people with chronic pain treated with opioids for extended periods.
As an ex patient who suffered of extreme chronic pain for over 2 years after a surgery I have studied the issue ever since. To just think that the amount of pain that I've been through can be felt by anyone else breaks my heart, but that a kid can suffer that way is almost unbearable to accept. That said, as an ex patient, I have severe critics on how many doctors and specialists place the "psychological" card on the conversation. Usually it is used for 2 main things: discredit the patient claims or to present it as a replacement to a complete lack of knowledge of why the pain is there. When people don't have a clue about what's going on they throw it back on the patients lap and say "Maybe it's psychological". From my experience what really works is a combination of 3 things: investigation, right drugs and physiotherapy. In the majority of cases there is something wrong in the patients body, not in his mind or his behavior. People want so hard to believe that if you "want hard", if you do not "focus"on the pain and if you avoid the medication that could actually bring you some relief everything will go away by itself, then it doesn't and guess what? It's your fault. I wish I could believe the Ted talkers, but for many people pain is no "illusion", it is just harsh reality. Today I no longer suffer of debilitating pain, I take mild pills when it happens and I no longer have to go to physiotherapy, but without those 3 things combined I would have never overcome the situation.
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Being a chronic pain patient myself (for the past 19 years) I'm somewhat suspicious of terms like “guided imagery, mindfulness and biofeedback” and physicians who claim that chronic pain “is hurtful but not harmful.”
Unrelieved chronic pain does actual physical damage to the brain, often disrupting the ability to function normally. In children, the consequences can be life altering – and not in a good way.
The Drug Enforcement Agency has threatened the American medical community with arrest and prosecution if they prescribe what is considered “too many” opioids, a nebulous number that apparently depends on the arresting agent's opinion rather than hard science. The result has become millions of people living with untreated agony from incurable physical conditions. This is presented as the solution to thousands of overdose deaths caused by illegal narcotics, primarily fentanyl imported from China.
Anti-depressants, mind games and outright 'woo' are a poor substitute for opioids, which rarely cause addiction when used solely to treat pain. Is it really preferable that children scream with the misery of damaged bodies than even one recreational drug user have access to prescription opioids?
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Your assumption that opioids are the “correct” medication for the treatment of chronic pain is unfounded. There is absolutely no evidence that these meds are effective at treating chronic pain any better than other existing alternatives.
Giving opioids to kids/adults (outside of a brief well monitored posted period, perhaps) has, however, been proven, beyond the shadow of a doubt to result in massive risks of addiction, overdose and death.
There are simply NO well trained physicians (who don’t take money from industry) who routinely prescribe opioids for chronic Noncancer Pain. And it’s not cause they’re afraid. It’s because they see that these meds are 99% risk and 1% benefit.
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I suffered from long term pain in my neck, shoulder, and hip --all interconnected from an injury. Biofeedback was the magic bullet. It does not merely ease the pain. Yes, it is a relaxation technique, but when practiced consistently, it actually rewires the brain pathways to ease "engraved spasm". You use biofeedback to train the brain rain to release tension permanently. You can use biofeedback to achieve a "new normal" of relaxed muscles. This is all without medication. For me, it gave me back my life.
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@Bob Please let us know your medical background and specialized training in pain management.
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OHSU is an extremely poor source for "scientific" information on chronic pain.
They advocate the use of Reiki, acupuncture, and prayer in lieu of established medical practice.
Their doctors advocate for their religious beliefs over the welfare of their patients in pretty much the *exact* footsteps of Mother Teresa.
One of their doctors told me I needed to embrace my suffering as it would bring me closer to Jesus.
I'm all for limiting the use of narcotics in the management of acute pain and mild chronic pain.
Though when it comes to terminal disease the advocacy against the use of opiates is ultimately criminal.
If a patient is left with a choice between suicide and a narcotic, they should be given the choice of taking the narcotic. If a patient's pain itself is malignant ... that patient should be offered an alternative to suicide.
OHSU doctors have taken a position of no narcotics .. no matter the scenario ... and unless they managed to borrow some of Jesus' magic and can channel it with their Reiki treatments ... they've killed patients as a result.
We look at cases like Mother Teresa with complete and utter disgust, but for some reason when it comes to Americans facing the same circumstances we ignore them to die at the hands of "doctors" advocating the same religious dogma.
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It needs to reiterated that even when pain is due to a psychological problem it is just as real as if it is due to a physical one. Furthermore, most cases of chronic pain involve both physical and psychological factors and both must be addressed.
As to psychological treatments for chronic pain, in fact studies have shown they are more effective for pain secondary to physical problems than to psychological ones.
Finally, the article notes the tragedy of children and their parents going from doctor to doctor, often undergoing unnecessary tests and treatments that do nothing but make them less trusting of future interactions with medical professionals and increase the size of the wallets of the doctors they have already seen. This is also true of adults with chronic pain.
I am a pain management physician and it amazes how many people with chronic pain think that there is a physician somewhere with a magic cure for it and they just have to find him. I always explain to them that if such a cure existed it would be on the front page of every newspaper and be the lead story on every TV network in the country and probably most of the rest of the world as in medicine anyone who makes a new discovery wants to announce it as quickly as possible to get full credit for it.
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@Steve, some time ago I saw a pain management doc like you who took away my hope and left me in tears. Told me to accept my fate and take Lyrica and get fat. Luckily I have continued to advocate for myself and persevere, and have now found doctors who are willing to help and seek answers with me. Readers, they're out there. Don't listen to Steve. Keep looking. There is hope and help.
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@NYer
Either you misunderstood what the doctor was telling you or you had a lousy doctor.
What the doctor may have told you is that there is usually no cure for chronic pain and that what needs to be done is to maximize the level of patients' functioning. And that requires that the patients do most of the work. You may not want to hear this, but this is the truth.
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@Steve
I spent years doing all of the work. Reading medical journals and bring them to physicians because very few are willing to take the time to research my very rare condition. Once I was yelled at because a doctor did not understand the medical terms I was using. I had to dumb them down for him. I have spent almost 30 years in and out of PT. When I was a child there was some benefit but as an adult with the extent of damage I have now PT has only ever been harmful. I have ended up in the ER from injuries sustained at PT. I have tried psychotherapy from over 6 practioners. Two gave advice that could have killed me. One spent an hour berating me for not reporting sexual assault from a doctor when I was a teen. Another was constantly distracted by squirrels outside the window. One was kind and understood and did not shame me. His son had a disability and he knew how rough it could be. I tried biofeedback, massage (helps but not enough), exercising, losing weight, yoga (ended up injured) ect. What more could I have done? Now I have a compassionate doctor who prescribes pain meds. I still struggle to function but I can do activities I enjoy sometimes, I am happy, I can volunteer in a flexible at home position. My condition will only get worse and I have hopefully a long life to live. I don't see the point in wasting it doing "treatments" that don't help and in fact worsen my condition. Many people with my condition face the same-useless treatments and no relief. I got lucky.
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These same techniques should work for adults too. It is possible to teach an old dog new tricks. The sentence that stood out for me is not to keep asking how a child is feeling. Long ago, a read a book about a twelve year dying of cancer. He told his mother not to keep asking him how he felt because it caused him to think about his condition and quantify when he wasn't thinking about it before. I have practiced that since. I told my mother not to ask me about how I felt if she knew I had a headache or felt sick. I also don't ask others and they may feel that I don't care, but not dwelling on pain is a very important factor in its perception.
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@S.L.
That might work for a minor, occasional headache. When the pain is so bad you are throwing up and are in so much agony you can't walk to the bathroom and the pain goes on every single day for over a year not thinking about it isn't possible. I have been in pain since I was born we believe and endured many painful (ultimately pointless) surgeries as a guinea pig for doctors. Now my body is deteriorating from the surgeries. It's insulting when people talking about just ignoring the pain. I ignored it for years. Eventually the pain intensified drastically. I was losing 5 pounds a week because I was in too much pain to eat without throwing up. I could sleep only 2-3 hours a night until I woke up crying from the pain. Sometimes pain is just that bad and we are fortunate we have actual medicines to treat it. It's disgusting that both children and adults are denied medications for pain when the real issue is illegal street drugs. But people in pain often struggle with the basics, we don't always have the energy to protest so we are easy scapegoats. All that is happening now is people will still do illegal drugs and people in pain will suffer more than needed and potentially die. I knew someone who shot herself because her pain was not properly treated for years and she just couldn't take it anymore.
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Great article. Chronic pain at any level is a disaster. I'm glad these doctors are working the problem. I imagine the amount of suffering is extraordinary, and for a child frightening too.
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