Opioids Kill White Americans – Is it opioids or suicide or addiction or untreated pain?


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Drug Overdoses Propel Rise in

Mortality Rates of Young Whites

New York Times

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Yes, white Americans, headlined yesterday by Gina Kolata and Sarah Cohen, New York Times science writers.  This article points to the highest mortality in young whites. See post early November on the Princeton researchers who reported deaths in white Americans. True, infants and children have severe pain, but this new article is on young white adults.


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Those who are anti-opioid and those who lost a loved one from opioids and heroin (an opioid that helps pain), will send in comments to the paper so that everyone can see how bad opioids are. Most patients who take opioids are too disabled from pain to write.

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Pain is stigmatized, opioids stigmatized, people in pain are stigmatized, doctors who treat pain are stigmatized. Any wonder 97% of medical schools do not teach pain management?

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Is it opioids or suicide or addiction or untreated pain that is killing our youth?

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How many suicides have opioids prevented? Americans make up less than 5% of the global population but consume 80% of the world’s supply of opioid prescription pills. What if your cancer pain now becomes severe intractable chronic pain? Cancer has been changing. The survival rate has increased, and many of these cancer patients treated with opioid therapy, survived the cancer but have residual chronic pain from cancer or its treatment. Surely they are among the 18,000 white people who died.

 

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Please read the earlier post this week on the ethics of opioid treatment, on

CDC’s imminent radical cut in opioid doses for 100 million patients nationwide.

Use search function above photo – type in CDC or DEA.

Your pain. Your lives. Their profit.

A thorny problem.

Tell us what happened to you. Doctors, tell us what you are seeing.

Have you been denied disability due to pain? Denied non-opioid treatment?

Chronic severe pain affects forty million Americans.

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KONICA MINOLTA DIGITAL CAMERA

Some insurers have denied or limited non-opioid treatments yet continued expensive opioids for decades. Has your insurance refused your treatment? Pain specialists have been barraged by denials for years.  Please comment below.

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As noted last week, I have spent 15 years developing alternatives to failed opioid treatment for chronic intractable pain and writing about that on these pages since April 2009. But opioids must be available as last resort.

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FACT:

  • Opioids killed almost 18,000 Americans in 2014 – prescription opioids, not street drugs.

  • 40 million American millions with severe pain, millions not thousands

  • 100 million with chronic pain.

  • CDC will imminently, radically cut everyone’s opioid dose

  • Health insurers will oblige, and incidentally show increased profit to shareholders

  • Suicide increases with untreated pain

  • Death rates for “whites ages 25 to 34 was five times its level in 1999”

  • This age group has more injuries from work and play that can lead to disability, job loss

  • Insurance is unaffordable or not purchased by many young adults

  • My own colleagues cannot afford high deductibles – prescriptions are now counted in deductibles, now unaffordable

  • Can you afford $20,000 per month for your opioid or is cheap heroin more affordable? Can you afford your usual drugs on Medicare once you are in the “donut hole.” Can you afford $28 per day, $840 per month for gout, when colchicine was 12 cents a day a couple years ago?

    • Do insurance denials increase liklihood of cheaper alternatives such as heroin or illegal marijuana resulting in death by drug dealer?

    • Do exhorbitant costs of opioids lead insurers to deny your medication?

  • Insurers have refused to pay for abuse-deterrent and tamper-resistant formulations of opioids

  •  Insurers have refused to pay for proven, widely accepted, nonopioid analgesics:

    • Lyrica

    • Horizant

    • Gralise

    • Cymbalta

    • Does it help the DEA and NIH and universities to teach those as nonopioid alternatives when they are not covered and not affordable the rest of your life?

    • Insurers deny every known compounded analgesic though low cost and effective, even for Tricare’s disabled veterans, even 5% lidocaine ointment for nerve pain, dextromethorphan, oxytocin, low dose naltrexone – Stanford published research on naltrexone years ago and now doing research on it again for CRPS, many many others

    • Insurers deny proven analgesics that are used by armed forces, university hospitals, select doctors, for life threatening pain: ketamine

    • Insurers deny off-label analgesics that may work better than opioids, e.g. memantine, an Alzheimers drug – can relieve intractable nerve pain (French publication on CRPS/RSD pain)

    • Insurers deny medications that reduce side effects of opioids, e.g. nonaddicting modafinil popular with students, to increase alertness when opioids cause drowsiness that may cause injury, death – gosh 10 years ago!

    • Is drowsiness the cause of some of those 18,000 opioid deaths?

  • Health insurers have refused coverage for treatments such as P.T., psychotherapy for coping skills, blocks.

  • Insurers deny medications that relieve the withering side effects of opioid withdrawal, making it impossible for many to taper off, e.g. Adderall, Wellbutrin (dopamine)

  • Cannabis, a nonopioid, classified by US Congress as Schedule I, illegal federally for human use, illegal to take on a plane or cross state/national borders, found on meteorites, made by sponges and some of the earliest living species on the planet, used for thousands of years for pain, while cocaine and methamphetamine are classified as Schedule II for prescription purposes.

  • Opioids, even vicodin, require monthly doctor visits, costs, monthly for sixty years

  • Why whites dying of opioids? People of color are denied prescription opioids. Stark data published for decades.

  • Heroin is an opioid, cheap and available; its “unAmerican” – used in England for pain, used thousands of years for pain

  • Untreated pain is one reason people turn to heroin, affordable is another

  • Violence and drinking and taking drugs can begin with chronic pain and job loss, not always the other way around, chicken egg

  • Opioids cost pennies to make, patient’s cost is $20,000 per month for Rx. Insurers paid what the market would bear… in the old days. Who is trapped in the middle of this fight for shareholder profit?

    • How many of us would take 2 or 4 extra pain pills when pain spikes to extreme for days?

    • If you are disabled, can you afford insurance or expensive prescription drugs?

  • “Poverty and stress, for example, are risk factors for misuse of prescription narcotics,” Dr. Hayward said.

  • When you are not getting enough sleep and rest, working too many hours overtime or 3 jobs, inflammation and pain spikes

  • Misuse of opioids in > 33% (perhaps 48%?) of cancer patients at Memorial Sloan Kettering Cancer Center in high resource settings when insurance was better, published 1990’s.

  • Cancer pain – usually time limited. Intractable chronic pain – forever.
    .How many jobs will be lost and how many suicides when CDC imminently imposes strict cuts in opioids?

  •  DEA recently requires every pain patient taking opioids, including those with cancer, to be diagnosed “Opioid Dependent” — not only addicts – the same diagnosis for pain patients includes addicts. The term “addiction” has been equated to dependence by most psychiatrist over the past 30 years. It may be interesting to see what criteria are used to define “addiction” if any, in DSM V. Some important members acknowledge that the addition of dependence into addiction in DSM-III was a mistake….the DSM-V criteria will get rid of “abuse”, and will include craving. it will also apparently eliminate the legal/criminal criteria. DSM comments are extracted from here, with many good arguments on this epidemic, such as: “The US is leading the way in eradicating pain, but in doing so has created an unwanted byproduct: painkiller addiction.”
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    What would you want if you had intense chronic pain?

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    “For too many, and especially for too many women,” she said, “they are not in stable relationships, they don’t have jobs, they have children they can’t feed and clothe, and they have no support network.”

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    “It’s not medical care, it’s life,” she said. “There are people whose lives are so hard they break.”

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Opioids kill – or is it untreated pain?

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Pain kills, a maleficent force.

No one can help you. Only you have the tools to do it

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Alarms went off for me on radical opioid cuts in October and I posted when

DEA suddenly held conferences across the nation on sharply cutting opioid doses.

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How many of us especially seniors and male persons refuse to learn or use coping skills that

reduce pain without medication?

How many of us refuse to diet and lose weight to reduce pain and/or disability?

Politicians are sued if they tax sales of sugar loaded soft drinks.

One single can of soda per day exceeds acceptable sugar limits for entire day.

Snacks need to say much much time it takes to burn off fat –

quarter of large pizza 449 calories, walk off 1 hr 23 min;

large coke 140 calories, walk off 30 minutes.

Foods can be anti-inflammatory or pro-inflammatory.

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Obesity is pro-inflammatory.

So is lack of sleep.

People who sleep with animals in their bed and their bedroom, I’m talking to you.

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Yes, pain is in your mind.

Chronic back pain is no longer in the back, it’s in the brain, the pain matrix.

It’s behavior, not just pills. Pain is an emotional and psychosocial  and spiritual experience.

Work on it! Constantly.

Lord forbid we should teach stress reduction and meditation in grade school

and improve school lunches before kids start looking for heroin for pain.

Yes, kids have chronic pain, are sleep deprived, often obese.

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Isn’t this all un-American?

Injuries, pain, habits, pace activities, learn to avoid and treat pain – start young.

Taxpayers end up paying for ignorance and disability.

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I will soon be posting published research that documents health insurers have refused to pay for nonopioid treatment and how health care policy aimed at all people with chronic pain leads to suicide when drastic cuts are made to opioid doses – Washington State we are looking at you. Florida you’ve made headlines and 60 Minutes TV specials years ago.

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Do please comment below if your health insurer has refused medication, physical therapy, psycho-therapy, cognitive behavioral therapy, stress reduction, for chronic pain.

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How many of you have been denied social security disability by doctors who don’t know how to diagnose RSD, Complex Regional Pain Syndrome? Let me know. I will pass on that data to researchers collecting information on untreated pain.

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I have written many times on these pages, and more often than ever these past years as insurers cut back more and more. This will rapidly get worse. We need your data.

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Please send in your stories. You are not alone.

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So many issues. Steven Passik, PhD, was interview by Lynn Webster, MD – emphasis in bold is mine. Dr. Passik pioneered in management of chronic pain and pain in addicts. He has read some of Dr. Webster’s book. “You’re calling, the need for love and connection and all those things in the book, I’ve been – what’s largely lacking is outright, at times animosity towards people with pain and I think there’s a lot of projections sometimes because the therapy – the stigmatized disease – treated in stigmatized people with stigmatized drugs and interventions and so, it’s like a hat trick of stigma.  I’ve been to my share of pain conferences lately that people are really talking about, “Okay, well there’s come a realization that opioid-only, drug-only therapy, is really not going to work to the best majority of this population.  It doesn’t [mean] that opioids should be ignored and we’ll get into that later, but that they’re going to work in isolation and should never been expected to.  And then they start advocating things that are a lot like supportive and cognitive behavioral therapy and to be practiced basically by the primary care physician or the pain doctor.  And the idea that, to me that’s in a way comical because as a psychologist myself, we’re dealing with the system wherein cognitive behavioral therapists can’t even get paid to do cognitive behavioral therapy.  And so, I think something’s got to give, and I think one of the main obstacle is that – and this really gets into the next question as well but I’ll come back to that more specifically – but when people have a set of whatever chronic condition that involves psychiatric motivational, lifestyle, spiritual as well as nociceptive elements, and we put a premium only on what you do to people, prescribed to people, put in people, take out of people, and then that’s only going to relegate the other kinds of treatment or the other kinds of ways in which a caring physician and treatment team would spend time with the patient to the very poorly reimbursed category.  You’ll always going to have a problem with people being treated with the kind of respect that should go along with treating that kind of an illness and it’s not unique even to chronic pain.  I’ve seen treatment scenarios with people who are taking care of people with pancreatic cancer, have an afternoon clinic that has 45 people in it.  I mean how you – something’s got to give in our healthcare systems and I do think that patients are going to have to stand up and say, “I don’t want to be on a conveyor belt.  I want to spend some time and make a connection with the people that are taking care of me and it’s not just about the piece paper in my hands, for a prescription or that I walk out the door with.”

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Clematis Blue.

 The New York Times article further says:

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…This is the smallest proportional and absolute gap in mortality between blacks and whites at these ages for more than a century,” Dr. Skinner said. If the past decade’s trends continue, even without any further progress in AIDS mortality, rates for blacks and whites will be equal in nine years, he said….

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…Not many young people die of any cause. In 2014, there were about 29,000 deaths out of a population of about 25 million whites in the 25-to-34 age group. That number had steadily increased since 2004, rising by about 5,500 — about 24 percent — while the population of the group as a whole rose only 5 percent. In 2004, there were 2,888 deaths from overdoses in that group; in 2014, the number totaled 7,558….

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…For young non-Hispanic whites, the death rate from accidental poisoning — which is mostly drug overdoses — rose to 30 per 100,000 from six over the years 1999 to 2014, and the suicide rate rose to 19.5 per 100,000 from 15, the Times analysis found….

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…For non-Hispanic whites ages 35 to 44, the accidental poisoning rate rose to 29.9 from 9.6 in that period. And for non-Hispanic whites ages 45 to 54 — the group studied by Dr. Case and Dr. Deaton — the poisoning rate rose to 29.9 per 100,000 from 6.7 and the suicide rate rose to 26 per 100,000 from 16, the Times analysis found….

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…Eileen Crimmins, a professor of gerontology at the University of Southern California, said the causes of death in these younger people were largely social — “violence and drinking and taking drugs.” Her research shows that social problems are concentrated in the lower education group.

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The material on this site is for informational purposes only.

It is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

Relevant comments are welcome.

If any questions, please call the office to schedule an appointment.

This site is not email for personal questions.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please be aware any advertising on this free website is

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Case Reports – Fibromyalgia, Spinal Stenosis, Disc Disease, CRPS, Transverse Myelitis, Central Pain


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Glial research key to intractable pain?

These are not ordinary cases.

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These patients have failed every known treatment for years under the care of well known specialists.

They show a remarkable and lasting response to these simple medications.

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The response is important because these medications are 

(1) available, low dose, nontoxic medications largely ignored by the medical community for pain,

(2) glial modulators, and

 (3) more glial research is urgently needed for millions with intractable pain.

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May 2011: The World Health Organization says undertreated pain is America’s #1 public health problem

Department of Health and Human Services says that patients with chronic pain

outnumber patients with heart disease, diabetes and cancer combined

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Fibromyalgia Disabling, Responds to LDN & Dextromethorphan

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AP, 75 years old with scoliosis, restless legs syndrome, anxiety, seen 8/6/04: Onset of fibromyalgia in 2000 after losing half her investment portfolio. It began with acute onset of severe arthralgias, myalgias, fatigue without fever, that prevented her from returning to her business as an art dealer for corporations, private collections. It disappeared without a trace suddenly in 2 months. She was nearly bedridden, just able to sit in a chair, diagnosed as fibromyalgia by a rheumatologist.

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Two years ago, pain, fatigue and “brain fog” returned in 2002, now disabled with intense muscle ache across upper and lower back, circumferentially in thighs/legs, everywhere except head, trunk, feet, fingers – stable since acute onset, markedly interferes with activity, mood, thinking, walking, sleeping, doing her checking account and driving. Pain ranges 2 to 10, average 4 to 5. Burning pain is recent, across upper thoracic and arms, avoids simple activity to avoid flare.  She rated moderate depression due to pain and inability to be active and live a social life. She has been unable to resume walking, a favorite activity. Exam: very anxious, muscle tenderness 18 points, including buttocks, calves, iliotibial bands, right cervical-thoracic paraspinal more than left. Spine tender at almost every level, maximal at L4-5. Sciatic notches tender. Both legs severely discolored brown from chronic venous insufficiency. Gait very slow, wide based later found due to cerebellar atrophy (MRI).

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Oxycontin was started and changed to fentanyl 50 mcg/hr every 72 hours. Fentanyl was then decreased to 25 mcg/hr after adding Fentora 100 mcg twice daily, Lyrica 50 mg at bedtime, with mirtazepine 15 mg and temazepam 15 mg for sleep. She continued to have marked difficulty walking, concentrating, thinking, and was unable to drive or do her checking account. Constant issues with constipation required multiple preparations for stool softener, laxatives, anti-emetics; hypertension was difficult to control, and she had high anxiety and stress.

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Fibromyalgia was then helped somewhat by pramipexole 0.5 mg twice daily, amitriptyline 20 to 50 mg/day, Lidoderm 5% patches 3 per day, clonidine 0.1 mg twice daily, that allowed fentanyl patch to be discontinued and lowered her opioid requirement down to Fentora 100 mcg bid, still with some constipation but less.

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11/3/08, started low dose naltrexone [LDN] 1 mg – slept only 3 hours that night. On 4 mg, no sleep at all, 1 mg somewhat better, 2 nights after that back to usual sleep but Pain levels low 0 to 3 limited to low back ache.  Before LDN,  pain ranged from 3 to 8, average 5. She had no withdrawal from opioids.  BM’s were excellent for at least 3 days.  Sinemet 25/100 replaced Fentora for restless legs syndrome.

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However, LDN was discontinued a few weeks later as she had so much energy she was hypomanic. Months later she again developed some pain.

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4/8/09 started Delsym 2 teaspoons every 12 hours. Pain dropped to zero. She never needed opioid again, had no withdrawal. A dose of Delsym is the same as long acting dextromethorphan [DM] 60 mg capsules, but 60 mg was too strong for her —- she became hypomanic again. DM allowed her to become pain free. She stopped DM 10 days, feeling so great she forgot to take it until low back pain returned initially mild, then severe. “I started getting back pain, I thought it was just back pain. I have scoliosis, then it became very severe, then realized am I getting fibromyalgia again.”

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After resuming DM, it took only 3 days for pain to come down from 10 to 3-4, then less and less to 1-2 on scale of 10. She was back on DM 4 days. Today, after being off DM and getting return of pain, she is now still using a Lidoderm 5% patch daily to the low back and occasional Aspercreme to groin qhs. Did not need to use these when pain was zero.

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She is 80 years old feeling better than she felt when she was 50!  “My biggest problem is slowing down. I’m 80. I enjoy doing what I’m doing. I like being alive. I’m a little hyper so I stopped drinking coffee.  Hyper because so excited about life, and catching up to what I could have done.” She is now able to clean and organize things she put off for years while in pain. She began designing bathrooms and kitchens for more than one location and waking up after 6 hours of sleep to begin work all day. Her husband describes her as having the energy of ten people. He needs to interrupt her to stop work and have lunch.

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“It changed my outlook, I’m so much happier. I am in heaven. I am back to my mental age of 50. I feel alive with energy, vibrance, lust for life. I drive clearly, I have a brain, my reaction to the wheel, to moving and turning and seeing things is better.”

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10-19-09, with mild recurrence of pain, she was advised to continue DM 60 mg  AM and PM, add naltrexone 4.5 mg PM, continue both for 1 or 2 weeks and discontinue if no more pain.

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7-26-10, experimented with timing and dosage, 4.5 mg LDN best at 5 or 7 AM, 2 to 4 PM, and bedtime.  DM 60 mg twice daily. Voltaren gel qd < 1/2 tsp total in AM only at times variously at hips, back, medial arms, groin, thighs, behind knees where pain occurs when it occurs. Rates pain 0 to 2, avg 0. Has pain if waits too long to take LDN too long.

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“I feel wonderful. I don’t feel high. Normal, comfortable at ease, mentally clear – more than in years, memory is better – even helped dyslexia. Now I’m able to skim reading.” She reads faster, is able to multitask ten things at once and get them all done. Husband says, ”She has boundless energy.” Biggest problem is instability gait, wobbles. Fear of falling. Fell backwards in bedroom one month ago,a  trip and fall onto her back, bruised posterior thoracic and right arm. Had home PT. She works out in gym, treadmill daily. Exam: 2/3 of proximal legs and both feet now normal skin color. Gait slowed. Wide based. MS and mood – excellent. Drowsy [never sits still at home].

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Fall 2010, husband reports her gait markedly improved, faster, more stable after dental prothesis. She is walking faster. She is now 82 and full of energy. Visits initially were monthly for several years while on opioid analgesics, now seen 2 or 3 times a year for minor adjustments and off opioids since 2008.

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Of course all specialists have stories of unusual responses,

but these are responses to the combination of medications that I use, that are not used by other MD’s.

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Transverse Myelitis Responding to Low Dose Naltrexone

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There is currently no known treatment for Transverse Myelitis. It is very rare, if ever possible, to be able to reverse lesions of the brain and spinal cord seen on MRI, especially if chronic. This man is responding to this tiny dose of naltrexone, 1/6th or 1/8th of the smallest tablet.

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FB, 47 year old male triathlete seen 11/1/10. He was in excellent health until 11/09. He began to have interscapular pain worse on the left, days later a band around the waist approximately T8-T10 described as “muscular” discomfort, later with numbness in the same area, followed by weakness, spasticity of the left lower limb and atrophy. Intermittent Lhermitte’s, now resolved. Hypersensitivity to sensation of his shirt across his chest and shoulders lasted 4 to 6 weeks with initial onset. Initially misdiagnosed as Multiple Sclerosis. MRI and spinal fluid led to diagnosis of transverse myelitis.

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On 3/11/10, MRI cervical and thoracic cord [probably the second MRI of two sets of MRI’s] showed extensive parenchymatous lesions extending at least 10 segments from T1-T10 with extra-axial fluid collection that appears as an extensive arachnoid cyst over multiple levels. No obvious cord compression. CSF Mixed lymphocytes with reactive pleocytosis, WBC 2/cu mm, 97% lymphs, 3% monos.

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Diagnoses  11/1/10:  Transverse myelitis with foot drop, spastic monoparesis, atrophy of the left lower extremity, neurogenic bladder, constipation, band around the lower thoracic “waist” onset 11/09, self-treated by injections of B12 with declofenac.   He also had gluten intolerance – eating gluten flares above symptoms

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1/27/11, return visit: “I feel l ike I’ve come light years away” compared to one year ago.

Low dose naltrexone [LDN]  prescribed November 2010, took for few months. Felt immediate effects, improved in strength at left lower extremity, foot drop still present but no longer catches toes on curbs or steps.

He increased dose to 7 or 8 mg, began to feel slightly weird, mild insomnia, like head felt a little weird. Stopped LDN a couple months.

Resumed LDN April 2011,  and again began to feel positive effects; used it daily since then, probably 6 to 7 mg/day.

Resolved: burning pain both feet had radiated up the calves when seen 11/10 ––> discontinued gabapentin one year ago, about 1/10.

Resolved: banding around the waist.

Improved strength 30%  in left lower extremity, still unable to push off with the left foot, but no pain.

Improved: Occasionally used to get a trembling in the left leg evenings 7 or 8 pm, shaking every 20 secs for an hour, at times preventing sleep – resolved about 4 months ago, occurs now perhaps 1 or 2 days a month.

Improved bladder urgency, must find toilet 3 minutes before he voids, now limited to the first 3 hours of the morning.  Before, he could not be far from restroom. Rectal sphincter feels weak.

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In December 2011, he felt symptoms were plateauing, slowly getting better. Went on vacation in January, ran out of LDN for 11 days and is today 30% weaker. That was the longest time he has been off LDN in the last 9 months. The left leg feels a little like spaghetti. When on LDN, he felt stronger when lifting the leg.

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Sleep: When began LDN, had 3 or 4 months of vivid dreaming, but urinated during sleep 2 or 3 times a month while have the vivid dream that he was voiding. That resolved.

Still has weird sensations: right foot a little burning sensation, not pain, of the whole foot, lasting 1 or 2 hours, quite tolerable, nothing like it was before when pain radiated to the calves of both legs.

His medications:  LDN, vitamin D3, alpha lipoic acid, Fish oil 2 or 3/day,

Every couple weeks he gets an injection of B12 and diclofenac 2 vials to buttock and feels definite benefit – I warned not to use diclofenac due to high risk of heart attack, cardiac arrhythmias with this NSAID.

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Spinal Stenosis Pain Responds to Nasal Ketamine

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ML, 81 year old diabetic woman with heart surgery 9 months ago, reports that she was able to walk 26 miles a day in Snow Canyon Utah 10 years ago, but barely able to walk room to room the last year due to lumbar pain and weakness from spinal stenosis. Function failed to benefit from tramadol 100 mg x 3/day and she disliked the side effects. Gabapentin failed to help, but when she tried to stop, she had severe nausea and she lost so much weight in four days that her endocrinologist advised her to resume it.

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Nasal ketamine was started with excellent results allowing her to walk again. Unfortunately, on her own, she abruptly and almost immediately stopped tramadol which resulted in severe opioid withdrawal: severe vomiting, dry heaves and watery diarrhea for 48 hours. She was admitted via ER with chest pressure and muscle strain of abdominal muscles from vomiting. EKG and chemistry ruled out heart attack. Low potassium was corrected and she returned home the next day delighted with pain control.

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A few days after hospital discharge she reports: “Feeling good, actually exercising in the pool every day, 30 minutes without stopping.” Weather here has been sunny 80 degrees this January. “I never built back my stamina after the heart surgery because of the pain.  I think I am finally on the right  track and it feels good!!” Her son is coming over to walk around the block with her tomorrow.

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 Complex Regional Pain Syndrome 70% Better in 6 Weeks after Opioid Detox,

Responding to Low Dose Naltrexone, Ketamine, Lamotrigine, Memantine

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AD, 23 year old male athlete with Complex Regional Pain Syndrome [CRPS] caused him to be bedridden 4.5 years on opioids. Pain was so severe he was unable to eat and lost 30 pounds of muscle. He was slowly able to bear weight and walk 5 or 6 steps with an underarm crutch, but used a wheelchair when not in bed. Fatigue was severe and unbearable just to be out of bed a few minutes. Pain involved all limbs, but focused at the cold right lower extremity, particularly the knee where he had maximal pain. He is tall and weighed 110 pounds when first seen July 2011.

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I advise patients that opioids create pain.  I am guided by a colleague who detoxed thousands of persons in pain over a 20 year period and never once found the patient had more pain after detox. Confirming this, Baron and McDonald published Significant pain reduction in chronic pain patients after detoxification from high-dose opioids in 2006. Some of the science  is discussed here.

~in 2006

This young man decided the night of his first visit to stop opioids and was admitted for symptom control with opioid withdrawal. He was started on low dose naltrexone [LDN], N-acetyl cysteine, dextromethorphan, slow titration of lamotrigine and memantine slow titration, and oral ketamine. Six weeks later he returned and rated himself 70% better, no longer in a wheelchair, not needing a crutch, but still with significant fatigue that caused him to need to lie down during the day. However, he was able to return to his MBA program by September and is doing well in college.

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  CRPS pain 70% Better in 6 weeks on Low Dose Naltrexone [LDN], Patient with ALS

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FG,  a 71 year old woman with Complex Regional Pain Syndrome [CRPS] and severe burning pain in the legs that markedly interfered with sleep, was seen in fall 2011 for pain in the legs that began two years ago after thoracic fusion October 2009, with cage and titanium rods T4-T9. Disc at T5-6 was compressing the spinal cord and there was an asymptomatic T4-T5 compression fracture 4 to 5 years ago. After thoracic fusion she was able to use a walker for a time, but had weakness progressing to paraplegia and had been in a wheelchair for 6 months. ALS was diagnosed at two university medical centers. Her feet were deep purple, swollen twice their size. and now back to normal size after 7 low power laser treatments. She was now having a frequent ache in both deltoids for a few months from needing to use her arms to push up from the wheelchair. Recently she had severe weight loss with shortness of breath, and during sleep used CPAP for obstructive sleep apnea. Polymyalgia rheumatic from year 2000 was in remission – she’d been on prednisone 5 years until 2005. Breathing was shallow, FVC 1.72 is 54% of predicted.

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She had a spinal cord stimulator at T10-11.

Medications tried and failed: Cymbalta 30 mg maximum dose, Neurontin 400 mg BID maximum dose, Lyrica dose unknown. Fentanyl patches no effect.

Methadone 25 mg/day for 1.5 years, is the only medication that helps, estimated 80% relief, nevertheless described pain as severe. She used it 5 of 7 days. With ALS causing progressive respiratory difficulty consistent with neuromuscular disease, it was deemed dangerous to continue an opioid. 

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Low dose naltrexone 4.5 mg to be started after all methadone is out of her system. She was started on N-acetyl cysteine 600 mg capsules x 3/day – the standard of care in Netherlands since 1995 for cold CRPS. Lamictal 25 mg, to begin 1 daily for 2 weeks and slowly titrate to 300 mg per day.

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On return 6 seeks later, she was delighted to report 70% relief of pain. She plans to return if pain progresses.

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Complex Lumbar Disc Disease Markedly Better with Low Dose Naltrexone 

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CL, first seen age 57, December 2004, for pain right buttock radiating to right leg due to degenerative disc disease with lumbar radiculitis. She injured the right knee four weeks prior after giveaway weakness of the right leg. After the recent lumbar laminectomy in June 2003, she had done well only during the months of October, November, December before she herniated the lumbar disc at L3-4 and declined further surgery. The flare occurred after sitting in a chair for 4 hours taking a class. Symptoms were similar to those she had prior to extensive lumbar surgery but she declined repeat surgery. On Exam, she had positive straight leg raising at 45 degrees bilaterally and diminished reflex right knee, but motor, sensory exam was otherwise intact.

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She had received epidurals perhaps 6 per year from 1999 until December 2004, posing a risk for osteoporosis, and she had symptoms of probable ulcer disease from a steroid dose pack. She had extreme pain during the epidural, but got fairly good relief for only one to two months. Pain in the leg now is 50% less from the recent epidural but will it last?

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Past Surgery: Cervical laminectomy and fusion C5-C7 with anterior plate, lumbar hemi-laminotomies L3 to S1 on the right and discectomy right L3-L4 in June 2003. MRI done after surgery 4/30/04: 1.  Large right paracentral recurrent disc herniation filling right lateral recess at L3-4. 2.  Asymmetrical right foraminal & extraforaminal disc protrusion at L4-5.  3. L5-S1, mild right foraminal stenosis due to facet hypertrophy & asymmetrical disc bulging on the right.

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She was started with a Fentanyl patch then changed to Oxycontin but continued difficulty walking, standing, lifting. Flying to Boston to see her son would result in being bedridden for the week in Boston and after returning home. However, a few days prior to another trip to Boston, Namenda 5 mg profoundly helped back pain. She was no longer bedridden but was able to travel up and down the East coast and fly home with markedly improved function. Stretching, doing yoga. Walked briskly on beach with son for quite some time.

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On  8/31/09 , surgery for hyperparathyroidism removed two parathyroid glands on left side, biopsied on right.  Back pain “killing me” on left lumbar side postop, hospital 1-1/2” mattress caused flare. She was not back on Namenda 5 mg as it was too painful to swallow and expensive on her budget.

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Low dose naltrexone [LDN] was started 12/12/08, after stopping the Fentanyl patch 2 days previously. On January 2009, she reported: “My pain level dropped to about 2-3 at that time and was down to 1 by Dec. 15th. With the patch still in by bloodstream for those few days my pain level never really spiked.  There was a very even transition from the patch to the LDN. What I do know is that my pain level has remained at about a 1-2 for the past month, even with an increased stress level and much time spent on my feet. [She has had lifelong insomnia.] It hasn’t changed my sleep pattern at all.  I still take the Temazepam several times to help me sleep a little bit better. I’m very happy that the LDN has given me so much relief from the pain I’ve dealt with for over 5 years.”

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1/29/12, she emails, “Although my lower back pain is pretty well controlled, my right knee pain prohibits me from doing many things that I would like to do. However, I had a significant event last night.

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I awoke at 3AM with terrible stabbing pain going from my right knee to my right foot. I was in too much pain to deal with the Ketamine spray on a Q-tip, so I just used 3 sprays in each nostril, pinched my nostrils together, and tilted my head back slightly. The pain was completely gone in 30 seconds and I was able to go back to sleep immediately. 

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I used the 50mg/ml dose since I haven’t picked up the stronger spray yet. It was amazing! I’ve continued to use the nasal Ketamine today and it has helped considerably, though not as dramatically as it did at 3AM.

[P.T.] told me there’s nothing more he can do for me.  He said he’d be happy to help me with my re-hab after my knee replacement.  So now I guess I will just have to hope that [my rheumatologist] will be able to offer me some pain relief with hyaluronic acid injections until I can convince myself that a replacement is the only solution.

So the LDN and the Ketamine spray are my constant companions for now.

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 Right Upper Quadrant & Ribs After Laparoscopic Gall Bladder Surgery Better with LDN

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CR, 40 year old engineer with scoliosis who had been a triathlete. She first saw me on 6/6/05 for persistent, intense, right upper quadrant abdominal and rib pain that began immediately after laparoscopic gall bladder surgery on 11/17/04, associated with severe fatigue. Pain in the abdominal area was so acute after surgery that she couldn’t swim for four months. Pain impaired breathing and ability to stand erect. She became a long distance swimmer as she now could not do a flip in a pool, run, bike or take part in other sports. Severe pain was triggered even by slight jogging, jarring, vibrations forcing her to buy another car. Positions that relieved right rib pain, made scoliosis worse. Prednisone last year caused loss of memory for  > 1 month of work projects.

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Spasm along the right lower rib was so severe she once fell out of bed. A cardiologist and neurologist advised removing the lower ribs.

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Pain was constant mild to moderate at right lower ribs with muscle spasm at the right epigastric area,  intermittently severe stabbing, tender, penetrating, burning.  She describes the pain as a scorpioin tailed dragon that stabs with its scorpion tail and blows fire breath inside the ribs. Pain ranged from 1 to 7, average 4 to 5, and severely interferes with function including ability to concentrate, general activity, enjoyment of life, sleep, work, relations with others and moderately interferes with walking and mood. Each of the 2 times she started P.T., she heard a “pop” when the ribs were released; spreading the ribs relieves pain/spasm.  She tried acupuncture, yoga, Feldenkrais.

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Exam: hyperalgesia over the tender T8 dermatome at the lower right ribs shading off toward T10; easily palpable tender trigger point at right epigastric area that radiates to the right anterior lateral iliac crest suggesting visceral ligamentous problems. Physical therapist noted a stiff band in the right upper quadrant but there are no ligaments in this area of the anatomy. She had temporary relief with adjustments, poor response with opioids and failed gabapentin. Intercostal blocks T8-T10 or T11 and right upper quadrant field blocks using Marcaine gave transient 50% relief. MRI and CT scans failed to disclose any etiology.

By 11/17/05, P.T. had freed several structures about the rib cage, but was not able to loosen the lower ribs that no longer flare out as the left side. P.T. has helped far more than nerve blocks (duration of nerve block effect 2 to 4 weeks if cortisone used, or 5 to 14 days if a field block after miserable numbness 48 hours). Pain is focal at the MCL inferior to the lower right rib, deep under the incisional scar triggered by crunches  (as with use of dishwasher, etc).  She is now able to swim butterfly, but not flip turns – flip turns are a crunch flexion. Right levator scapulae trigger point is flared with the same crunches and “feels related.”  She continues Feldenkrais but avoids flexion,no longer has difficulty breathing and since P.T. has been able to get the inspiration spirometer to the top. Inflammatory pain along the costochondral margins anterior and posterioly from T2 to T12 and below the right lower ribs fairly resolved with the topical ointment ketoprofen 20%, lidocaine 10%. She tried Bengay at the levitator scapulae but stopped Daypro due to burning mid sternum, uses aspirin with yogurt.

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New spine x-rays were reviewed at Boston Children’s Hospital compared with her most recent 10 year old spine MRI: The ribs are splinted upward where they should be down.  Scoliosis then measured 31 degrees at T1-6, and 28 degrees at T6-11 with the superior iliac crest 1 cm down.

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February 2009, she started low dose naltrexone [LDN] 1 mg:  For years, pain was 8 to 9, like I had swallowed a fire burning. After LDN it was gone in one hour, zero for 18 hours later returned but much lower 1.5 on scale of 10. Premenstrual pain also was there lower abdominal, prior 3 to 4, down to 1 while taking LDN. A morning swim in ocean usually takes a couple hours of swimming to warm up to get that endorphin high, since LDN now occurs in 20 min. Begins with complete feeling of ease and well being because you’re swimming in cold water, everything is cold and you’re tired, suddenly you’re not tired, its easy, nothing is terrrible anymore, all the frustration melts away. There are no long life threatening events, everything seems easier, you’re happier, and you love everyone. Everyone you see a that moment is beautiful and you love them.  The world is a little slower.  You always feel like you could swim [or run] forever, whereas before that point you feel you can go maybe 5 more minutes.

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Since mid morning a little hyper – sometimes I am if I have lots of sugar or caffeine [had none], talking faster, less patient slightly –  entire family has ADD or ADHD. 
Slept really well  —- usually has light sleep, poor quality.
I got my desk cleared off for the first time in weeks.
Had sinus headache 1-2 weeks, the head was still unchanged after LDN.
Had night sweats > 10 years, at 4 am none last night, in fact the opposite.  

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Sleep improves for some while on LDN. It is a morphinan, i.e. morphine like. “I sleep well on LDN… the neuroma in my foot is not gone but hurts less, one of those items I’ve been ignoring because the rib/abdominal pain kept me from hiking enough to care.  So far that’s what I’ve got, for some reason the best dosing for me seems to be alternating 2mg and 3mg. I don’t know why that is. I still get a good endorphin rush pretty early into exercise, even walking which I can do again.  Last week I accidentally walked 6 miles, longest I’ve walked in years!  Next I want to try hiking once the snow is gone.

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A stingray stabbed her the top of her foot on 4-28-11. Lifeguards usually call EMT for morphine as the injury causes so much pain that people black out. There was profuse bleeding, estimated one cup of blood, and swelling the size of an egg. The entire foot was covered with blood as were the footsteps on the beach. Pain quickly increased to 7 on scale of 10 but never went above ankle, then pain dropped to a 3 before they were able to put her foot into hot water. She was laughing with the lifeguard while being treated.  Swelling was almost gone 4 days later. It was a little tender to pressure, the puncture was still visible. She did not wear a shoe to avoid pressure over the wound, and to keep the wound clean to avoid bacterial infection. People were asking why she was not walking with crutches – not remotely necessary.

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She has scoliosis and wore braces for it as a child. “I’ve been using the SalonPas patches on my lower back, they give me a minor skin rash but work great. I suspect a combination of topicals and stretches will be the key.  For meds we’d have to be in the office with my records (allergic to tylenol and bad reactions to naproxen/Aleve though I may try it again some day).  Its more a question of what to do about the underlying cause -the spine- and avoiding the pain. I know having the pain isn’t good long term but its minor enough that I really didn’t feel it all this time because my front hurt more.  Peeling the onion!  While I was having a lot of rib pain I would get pulled forward and my lower back would go “out.” P.T. could help that by loosening the front and working the back.  Now it seems more complex to address.  I used to do lots of sit-ups and crunches to stabilize it but P.T. says no to those and my core is pretty stable.  I have been able to do yoga again (another LDN success) and I thought that helped in the past.  I’ll have to continue with that and see if it helps things in the long run….  I have to seek out the spine experts now that I can move more.  My ski turns are uneven, always have been becuase I turn easier to the left than the right (so I’ll turn one cheek more readily than the other).”

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Vibrations from dolphins ease the pain for days. She has experienced more encounters with dolphins and whales since the surgery. One day when she was aware of squid in the water, she noticed what she thought was the world’s biggest squid swimming 10 feet below her, except that it was a gray whale, which soon surfaced and blew water. Her reasoning for why marine life are attracted to her: scar tissue built up around her surgical scar, which she says makes a squeaking sound in the water. “It might be similar to how they perceive pain and illness.They might be coming together to try to help.”

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Further information will be posted on these cases, and more cases will be added as time permits.
They will include persons who had years of intractable chronic pain that severely limited function, who are now pain free
on low dose naltrexone [LDN] and/or other medications.  Some with intractable chronic pain have now been pain free off LDN and all pain medications for three years.
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The material on this site is for informational purposes only,

and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

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RSD – Complex Regional Pain Syndrome – A Case Report


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Rational Polypharmacy

Naltrexone is a remarkable drug for intractable pain

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I first saw this RN in June 2006.

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She is now 60 years old.  She was an OR scrub nurse for almost 30 years, but was disabled for the last 5 years before seeing me. She had Reflex Sympathetic Dystrophy [RSD] of both legs with “arthritis” of the feet/ankle that felt like she was “90 years old” with cold allodynia. Allodynia is pain from a stimulus such as light touch or a breath or air that is not normally painful. Imagine a light touch that feels like severe nerve pain, one of the most disturbing pains a person could have. The temperature of her feet was 81 degrees, hands 92 degrees.

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Pain of both feet felt like a vise grip, gnawing, penetrating, “like broken bones in the feet,” variable at different times but always worse as the day progressed, with a crushing sensation that penetrated through foot and ankle. She was unable to tolerate socks or anything on her feet after 5 pm, unable even to tolerate air on the area, unable to tolerate coolness below waist, but felt hot above waist. She wore a blanket and covers on the hottest 120 degree days, and forced herself to tolerate touch at the legs in order to desensitize them, as we instruct patients to do. She felt constant tingling numbness of the soles of feet for 3 years, with weakness, stiffness “almost solid” like a block. Spasm in soles of feet had resolved the last 6 months before seeing me.

Pain ranged from 2 to 9 on a scale of 10, where 10 is the worst pain imaginable, worst after 5 pm. Average pain was 3. It interfered with sleep at times, and she used a tented frame to keep blankets off her feet, preheated the bed to avoid any coolness, and avoided cold under all circumstances. In the morning, the joints felt like she had a broken ankle. She would massage the feet with lotion, put on alpaca socks, and slowly begin to walk. Then tried to mobilize the joints. Walking made pain worse though walking had always been a favorite activity.~

Before seeing me she had had more than 10 sympathetic blocks, was hospitalized 11 days due to headache from prednisone 60 mg that had been trialed to relieve her pain. She had been prescribed Procardia to relieve the “vascular” disease that she did not have but the drug led to gangrene of the gall bladder; she had been prescribed almost every “adjuvant” used to relieve pain and as much as 9 grams of Neurontin daily, all of this to attempt to relieve the severe pain in her legs and feet.

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This is how she got better

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When I first saw her in 2006, I prescribed low dose oral ketamine that gave relief lasting up to 3 hours from each dose. She then requested referral to Dr. Schwartzman, chief of neurology at Drexel University in Philadelphia, for continuous 5 day ketamine infusion that was done May 2007. She was pain free but it completely lost effect after 8 months, despite booster infusions every 4 to 6 weeks for 4 hours daily over 2 days during those 8 months. After insurance the cost out of pocket was $45,000 in 2007 alone. Dr. Schwartzman had nothing more to offer after it failed and said most patients have relief for less than 6 months if at all.

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In March 2007, I started her on a combination of Namenda 55 mg daily with lamotrigine 350 mg daily that relieved 90% of the pain, but once every 6 to 8 weeks she needed 12.5 to 25 mg low dose oral ketamine for breakthrough pain. Even more rarely, she used oxycodone 10 to 20 mg.

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In October 2008, adding naltrexone 1 mg by mouth, she became pain free. Since then she has not needed anything for breakthrough pain and on 3/5/09, she reported that her last use of ketamine and oxycodone occurred with the addition of low dose naltrexone.

 

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In 2009, she hiked 30 miles down the Grand Canyon and back up in 3 days.

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Naltrexone was later increased to 4.5 mg as she completely tapered off lamotrigine.

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By December 2009, the RSD was 98% better and she reported that it was not pain anymore. Medications then were naltrexone 12.5 mg at bedtime and Namenda 55 mg daily in divided doses. She had just a “remnant” of a little buzz, but no crushing except when active, late in the day.

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A few months later she slowly tapered off Namenda with no increase in pain; and in October 2010, on my advice she tapered naltrexone 12.5 mg from daily to every third day. There has been no increase in pain but she is reluctant to discontinue naltrexone for fear that RSD may recur.

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She hikes 2 miles 3 to 4 times a week, does Iron Mountain once a week, does “Silver Sneekers” exercise 1 hour 3 times a week and sleeps well 8 to 10 hours a night without a sleeping pill.

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She remains on low dose naltrexone as her sole medication for this

previously disabling neuropathic pain syndrome~

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She has returned to part time work and spends a few weeks a month traveling the world, hiking, volunteering, sightseeing.

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Research funding is needed to view whether we can detect

activated glia in the spinal cord, as discussed here.

If there are no signs of activated glia, she may feel reassured that the condition has resolved.

Naltrexone is an immune modulator.

The site of action of naltrexone is at the Toll-like receptor (TLR4) attached to the cell surface membrane of glia.

The ability to view activated glia would help greatly in treatment of so many conditions including neuropathic pain.

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Naltrexone

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I have found that naltrexone is a remarkable medication for various pain conditions, and going through the steps of rational polypharmacy may be very rewarding for some patients though at times it may work all on its own. It has caused me to completely reassess how I approach the treatment of intractable pain – not just RSD or CRPS but arthritis, sciatica and various forms of mechanical pain. And it has led to further changes in the timing and dosing of naltrexone based upon the experiences patients have reported back to me over the years. It is hoped that further research will lead to better understanding of how naltrexone acts upon pain pathways. Surprisingly we already know quite a fair amount.

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My deepest gratitude to Dr. Jau-Shyong Hong, Chief of Neuropharmacology at NIH, whose many generous discussions, emails and research publications have helped me to understand it’s profound anti-inflammatory effect in the central nervous system through its actions on microglia. I previously posted a discussion of mechanisms of naltrexone and dextromethorphan in greater detail here. Naltrexone and dextromethorphan are classified as morphinans, morphine-like. They suppress Superoxide, a free radical that destroys neurons which may cause or contribute to Alzheimers and Parkinsons Disease. That research goes back to the late 1980’s and continues to grow. Phase II studies with morphinans are now being done on those conditions. Studies are also going on now with naltrexone/Wellbutrin combination for weight loss. The drug is called Contrave, from Orexigen Therapeutics Inc. and the dose I believe is 32 mg naltrexone – I do not know how they decided upon that dosage.

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In my experience, naltrexone is a very benign drug at these low doses, though colleagues who prescribe 400 mg for the FDA approved use at that high dose may see some liver toxicity. I always begin at 1 mg or 4.5 mg, depending upon whether or not the patient is a slow drug metabolizer, i.e. may lack one of the CYP P450 chromosomes for metabolizing drugs. I have long suspected it also has an effect on the hypothalamus because a few patients with profound postmenopausal hot flashes have reported that is no longer a problem and that their husbands simply cannot believe the bonus, and this may explain the effect upon appetite that Orexigen has found. At higher doses than I generally use there may be some constipation which is treatable. It may cause vivid dreaming in some, and a small percentage may have insomnia for a few days. Pharmacology and safety is discussed here.

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Stay tuned. I’ll be adding more case reports of different pain conditions in the near future. They are truly fascinating. It has changed my entire approach to treating pain.

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Cost

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Wouldn’t it be nice if NIH funded more for pain research? Imagine how much money that would save the country and save the lives of each person with disability who could recover? As I posted here, the American Pain Society has shown that NIH spends 0.67% of its budget on pain research – less than 1% – though 10 to 20% of the population in the US suffers from chronic pain, an estimated 60 million Americans, and pain conditions are more prevalent among the elderly.

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I am told by my pharmacist that perhaps 70% of the time insurance will approve coverage for compounded low dose naltrexone. It is very affordable but some insurance carriers deny payment for naltrexone. Medicare will not pay for compounded medication either. Compare this low cost compound to the wholesale price for 100 tablets of Oxycontin, $1300, which may not be relieving pain – then multiple that by 2 or 3 each month for one patient. Imagine if the $22 billion of federal money for health insurance technology, for software which is untested and will expire in a few years, instead went into NIH funding for pain research. What a lovely thought.

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The material on this site is for informational purposes only, and

is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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