Who Develops Intractable Pain Syndrome?

By Forest Tennant, PNN Columnist

It is clear that a small percentage of chronic pain patients can develop Intractable Pain Syndrome (IPS), which is constant, incurable pain that has cardiovascular and endocrine complications. But which unfortunate chronic pain patients will succumb to this fate?

To this end, we have been surveying persons with IPS to understand who they are and how they developed the syndrome. Without knowledge as to “who” and “how” IPS occurs, it will be impossible to either prevent the condition, identify it in early stages or stop its progression.

In a survey of persons with IPS, we found that many were older and primarily female. Out of 28 patients surveyed, 20 were female and 8 were male, and their ages ranged from 34 to 77 years. The average age was 56 years.

In addition, these individuals had been ill and experienced chronic pain for many years. Only two of the 28 patients surveyed reported pain of less than five years duration. The majority could actually recall the day, month and year that their chronic pain shifted to IPS. 

Almost all reported three major manifestations:

• 100% Physical function declined

• 86% Needed medication to sleep

• 82% Mental functions declined

Key laboratory tests were frequently abnormal:

• 71% Hormone abnormality

• 53% High inflammatory markers 

• 32% High glucose levels 

The 28 patients surveyed were asked what medical conditions caused their IPS. Surprisingly, the majority said they had multiple diagnoses, which are listed below by condition:

• 20 Adhesive Arachnoiditis

• 9 Ehlers-Danlos Syndrome

• 7 Cervical Neck Neuropathy

• 5 Osteoarthritis

• 2 Reflex Sympathetic Dystrophy (CRPS)

• 2 Interstitial Cystitis

• 2 Traumatic Brain Injury

• 1 Rheumatoid Arthritis

• 1 Stroke

These findings show that IPS can develop from a relatively small number of painful conditions, with Adhesive Arachnoiditis and Ehlers-Danlos Syndrome the most common ones reported. Persons with IPS almost all report severe insomnia and declines in their physical and mental abilities. And laboratory tests validate the abnormal physiological impact of their non-stop constant pain.

In a separate clinical analysis of 40 persons with IPS, we found that over 60% had symptomatic characteristics in common, from constant pain and difficulty sleeping to sugar cravings and cold hands and feet. For a list of over two dozen IPS symptoms, click here.

Our mission forward as the IPS Research and Education Project is to bring recognition and treatment of IPS to every community across the globe. This presents a great challenge for us; to instruct and inform all concerned parties in acknowledging that IPS is a serious syndrome, and that it is exceedingly different from what is commonly known as chronic pain.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

How to Reduce Brain and Spinal Cord Inflammation

By Forest Tennant, PNN Columnist

Intractable pain syndrome (IPS) is constant pain with cardiovascular and endocrine dysfunction. IPS occurs when the initial cause of pain creates inflammation in the brain and spinal cord. This is called neuroinflammation.

Inflammation in the brain and spinal cord is what causes the worsening of IPS symptoms. Inflammation does its dirty work by burning out or damaging neurotransmitter systems such as dopamine, endorphin, cannabinoid, serotonin, and gaba aminobutyric acid (GABA). Common symptoms of neuroinflammation:

• Constant pain

• Fatigue

• Amotivation (Lack of motivation or purpose)

• Attention deficit

• Memory impairment

• Elevated blood pressure & pulse

• Social withdrawal

• Dietary change

• Weight gain

• Sugar craving

• Depression

Every person with IPS must attempt to control and reduce their brain and spinal cord inflammation. To reduce neuroinflammation, we recommend regular consumption of one or more of these non-prescription, natural herbal medicinal agents:

• Tumeric/Curcumin

• Ashwagandha

• Boswellia

• Palmitoyethanolamine (PEA)

• Traumeel

• Cannabidiol (CBD)

• Andrographis

You can take any of these on different days or several together, as long as you use at least one daily.

If the disorder that started your pain and IPS ends in “itis” -- arthritis, arachnoiditis, pancreatitis, cystitis, colitis or myositis -- you will also need a periodic (e.g., 1-2 times a week) low dose of a corticosteroid such as hydrocortisone, methylprednisolone, prednisone or dexamethasone.

Don’t rely on pain relievers alone. You must have an inflammation reduction component as part of your IPS treatment program.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Serious Complications Caused By Poorly Treated Pain

By Forest Tennant, PNN Columnist

Most anyone will tell you that blood pressure goes up due to pain. What is almost unrecognized in medical practice today, however, is that untreated or undertreated pain has such profound and devastating effects on the cardiovascular and endocrine systems that it will inevitably shorten the lifespan of individuals with intractable pain syndrome (IPS).

Constant pain elevates adrenaline and glucose at the same time that it overstimulates the autonomic nervous system, resulting in these cardiovascular (CV) complications:

• High Blood Pressure (Hypertension)               

• Elevated Pulse Rate (Tachycardia)                             

• Elevated Cholesterol (Lipids)                       

• Arteriosclerosis  

• Angina Pectoris

• Cardiac Arrythmias

• Heart Attack

• Sudden Death

The body needs a rest from constant pain to rejuvenate and re-energize the body’s CV and endocrine systems. The first goals of pain treatment must include the attainment of at least some pain free or nearly pain free hours, which enables the body to sleep and let the CV and endocrine system recuperate.

Calcium Complications

For many years, patients, families and doctors were bewildered when a chronic pain patient developed osteoporosis, scoliosis, arthritis, or even their teeth fell out. Now we know why. It is primarily because IPS causes multiple abnormalities in the endocrine system that lower calcium levels. 

Intractable pain is a huge stress that never shuts off, so it causes constant demand on the body’s glands to elevate the “Big 3” hormones: insulin, cortisol and adrenaline. This is made worse if pain is untreated or undertreated. 

Over time, the constant elevation of cortisol causes calcium to dissolve and leave the tissues of the teeth, joints and spine. Vertebrae may become so fragile with osteoporosis that the spine may collapse in places and give you scoliosis. When calcium leaves the joints, you get arthritis. People with IPS frequently have fractured hips and knee joints that have to be replaced. 

When cortisol is raised too long by constant pain, testosterone and estradiol levels may drop, and these two hormones are critical to prevent osteoporosis as they function to build bone, joints and teeth.

When cortisol is too high for too long, glucose and insulin are also raised, causing a nutritional state that may reduce vitamin D, magnesium, and other nutrients critical for tooth and bone maintenance.  

All persons with IPS and their families need to know about the cardiovascular and endocrine complications from untreated or undertreated pain. You may also need to inform your medical and dental practitioners about these health risks. Ask them to test you for high blood pressure, elevated pulse rate, high cholesterol and glucose levels. Most can easily test you for osteopenia (early osteoporosis), endocrine function and vitamin D levels.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Why Water Soaking Works

By Forest Tennant, PNN Columnist

There is no medical treatment older than water soaking. It is legend and still works. Adhesive Arachnoiditis and other Spinal Canal Inflammatory Disorders (SCID’s) are particularly helped by water soaking – so much so that we consider it an essential treatment.

Why water soaking relieves pain has been a mystery until recent times. It is known that damaged or “dead” nerves won’t conduct  the body’s natural electric currents, so electricity backs up and is trapped or retained in body tissues. The result is more inflammation and pain “all over.”

Electricity has a negative charge and water tends to have a positive charge, so it pulls out excess electricity from the body, reducing inflammation and pain. If the water contains a mineral, it will pull out even more electricity. That is why mineral hot baths and Epsom Salts are so effective.

The lumbar-sacral spinal canal is loaded with nerve roots. They constantly conduct electric currents that go from the spinal cord to the legs, feet, bladder, sex organs and intestine.

Any damage, by any cause, to the spinal canal nerve roots causes a backup of electricity which is painful and produces even more inflammation. To prevent disease progression, daily water soaking can be most helpful.

Types of Water Soaking

You don’t have to have a jacuzzi or pool to do water soaking. A bathtub is great, but most of us take showers. When you shower, keep the water as hot as you can stand, and massage and stretch your back muscles as the hot water runs over your back. Soaking for 10 to 15 minutes in a jacuzzi, pool or bathtub is preferable, but hot showers morning and night is about as good.

Don’t forget the Epsom Salts. The body normally excretes its excess electricity into the air, mainly through nerve ends in the hands, head and feet. Foot soaking, particularly with Epsom Salts or other herbal salts, is an age-old remedy that attracts the electric currents that travel down the sciatic and other leg nerves.

Another soaking technique is a warm, water-soaked towel or other wet wrap placed over the lower back for 5-10 minutes. Remember, water soaking isn’t an “all wet” idea.

Forest Tennant is retired from clinical practice but continues his research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project . Readers interested in subscribing to the  bulletins should send an email to tennantfoundation92@gmail.com.

The Tennant Foundation gives financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Ehlers-Danlos Is Common Cause of Intractable Pain

By Forest Tennant, PNN Columnist

Ehlers-Danlos Syndrome (EDS) is the best known of the hereditary collagen disorders. From birth, persons with EDS are preprogrammed to start dissolving collagen at some location in the body, as it causes a defect in the way collagen is produced or maintained throughout all tissues.

The fine and soft tissues that are the most susceptible to dissolution are found in the joints, ligaments, eyes, spine, gums and intestine. When these tissues deteriorate and begin to dissolve, inflammation, pain and neurologic impairments begin. The tissue may or may not rebuild and usually leaves permanent damage, pain and/or disability.

Collagen deterioration may start in childhood or middle age. An early sign is being double-jointed or extremely flexible.

It is unknown currently what the exact mechanism is, or what precipitating factors such as virus or trauma that initiate this reaction. Regardless, collagen dissolution will move to a new and different locations once the hereditary preprogramming begins.

EDS commonly hits the spinal canal and spine. The first major problem may be a cerebral spinal fluid leak, protrusion of a disc, Tarlov cyst or arachnoiditis. Given its predilection to hit the spine, EDS may produce the complication of Intractable Pain Syndrome (IPS). In fact, it seems to be emerging as the first or second most common cause of IPS.

EDS Screening Test

Our research has found that a high percentage of patients who have EDS don’t know it. If you have developed a spine or pain problem without an injury or other obvious cause, you should be screened for EDS.

This questionnaire was recently published to help screen people for EDS.   

1. Do you have pain in multiple locations?

2. Do you have extreme fatigue?

3. Are you clumsy sometimes and fall or walk into objects?

4. Are some of the joints in your hands, feet, elbow, hips or knees “loose” or quite flexible?

5. Have you had a lot of sprains or joint dislocations?

6. Is your skin thin in places?

7. Are you double-jointed or able to bend your fingers, arms, or ankle backward?

8. Are your hands and feet cold much of the time?

9. Do you bruise easily or have bruises that suddenly occur?

10.  Is your skin “stretchy” in some places?

11.  Are you constipated a lot?

12.  Do you suffer from heart burn or frequent episodes of food regurgitation? 

If you answered “Yes” to 6 or more of the 12 questions, you should see a doctor and have the diagnosis confirmed by a genetic test or skin biopsy.

If you have EDS or a hereditary collagen disorder, there are foods, supplements and hormones you can take to help restore and rebuild lost tissue. Click here to see them. These tissue building recommendations from the IPS Research and Education Project are meant to complement and supplement your treatment program, but are not a substitute for inflammation and pain control.

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Potentiation: How to Make Opioid Medication More Effective

By Forest Tennant, PNN Columnist

The oldest measure to either minimize the dosage or make an opioid more effective has been to add a chemical agent that makes the opioid act longer and stronger. This concept is known as “potentiation” and there are many examples of it throughout history.

Various herbs such as Boswellia (frankincense) were used with opium in ancient times to make it more potent. The Greek physicians Dioscorides and Galien recorded the use of opium combined with cannabis for many therapeutic purposes.

Physicians during the American Revolution titrated alcohol with opium for tuberculosis. The legendary gambler and gunslinger John Henry “Doc” Holiday survived many years with this regimen for his tuberculosis or sarcoid.

British physicians combined aspirin with morphine around the turn of the 19th Century. Later they determined that a stimulant-type drug, such as cocaine, made morphine more effective for the person with severe pain. This was called the Brompton Cocktail, named after the Royal Brompton Hospital in London, where it was used to treat cancer patients in the 1920’s.

Beginning around World War II, American pharmacological companies began combining the opioids codeine, hydrocodone and oxycodone with substances such as aspirin, caffeine, acetaminophen, ibuprofen and phenacetin. Today, the most popular potentiating combinations are acetaminophen with codeine, hydrocodone or oxycodone.

An opioid should almost never be taken alone by a person with Intractable Pain Syndrome. Why? First, you don’t get the full effect of the opioid. Second, without a potentiator, you will need to take a higher opioid dose when a lower one would suffice and have fewer risks.

Every IPS patient needs to identify at least two potentiators that won’t bother their stomach or cause headache, drowsiness or dizziness.

Available Potentiators

• Caffeine Tablet

• Mucuna

• Boswellia

• Gabapentin

• Taurine

• CBD Products

• Adderall

• Methylphenidate

• Dextroamphetamine

• Benadryl

• GABA

Consider switching to an opioid with acetaminophen, such as Vicodin or Percocet, or take a potentiator with your opioids. Don’t take alcohol, marijuana or a benzodiazepine (Xanax, Ativan, Valium, Klonopin) at the same time you take an opioid. Separate the two by at least an hour to avoid over-sedation. 

Forest Tennant is retired from clinical practice but continues his research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

7 Ways to Treat Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

Intractable Pain Syndrome (IPS) requires a care program custom-made for each individual person, depending on their underlying painful condition and clinical severity.

There are therapeutic, pharmacologic, dietary and physical measures you can take that specifically target the cause of IPS. Step One in finding relief and recovery is to target the cause of the pain, and not just take the “shotgun” approach with only symptomatic pain relievers. A multi-faceted approach is needed.

The 7-component treatment outlined here is to aid patients, families and medical practitioners in formulating an individualized IPS care program

1) Suppression of Inflammation

Underlying Cause: The injury or disease that originally produced the pain may continuously generate inflammation that requires suppression by a variety of means. Common measures to reduce inflammation include anti-inflammatory agents, electromagnetic therapies, local injections or topical agents.

Central Nerve Inflammation: IPS is caused by central nervous system (CNS) inflammation (neuroinflammation) that destroys or damages neurotransmitter systems. Only some treatment agents cross the blood brain barrier and suppress neuroinflammation. Some common agents: naltrexone, ketorolac, indomethacin, methylprednisolone, acetazolamide and  dexamethasone.

2) Sleep Restoration

It is during sleep that the CNS regenerates the neurotransmitters you need for pain control. Adequate sleep is necessary for this to occur. Some common agents: Ambien, trazadone, temazepam (Restoril), amitriptyline, melatonin and Benadryl.

3) Control of Electric Currents

Some drugs now called “neuropathic” normalize electric current conduction, which is erratic due to nerve damage. Some common agents: gabapentin (Neurontin), pregabalin (Lyrica) and benzodiazepines (Klonopin and Valium).

4) Pain Control

The constant pain of IPS is composed of two types of pain: ascending and descending. IPS control requires agents for both types.

Ascending Pain: Some common agents: cannabinoids, opioids, ketamine, clonidine, kratom and naltrexone (if not already on opioids).

Descending Pain: Some common agents: amphetamine salts (Adderall), phentermine, modafinil, methylphenidate, mucuna. 

5) Hormone and Neurotransmitter Supplementation

Groups of hormones now known as neurosteroids, and biochemical molecules known as neurotransmitters, are made in the brain and spinal cord. Their function includes suppressing inflammation, rebuilding damaged tissue and to provide pain control. Analgesic/pain-relieving drugs will not be effective if any neurosteroid or neurotransmitter is deficient. Neurotransmitter testing is now available.

Hormones: DHEA, pregnenolone, testosterone, progesterone.

Neurotransmitters: dopamine-noradrenaline, serotonin, GABA.

6) Anabolic Measures (Tissue Building)

In IPS, tissue degeneration is constantly present due to inflammation. Some genetic connective tissue/collagen diseases such as Ehlers-Danlos Syndrome (EDS) have a built-in, constant tissue degenerating component (catabolic).

Tissue building (“anabolic”) measures are essential to counteract tissue degeneration, and several agents have been identified that do this: nandrolone, human chorionic gonadotropin (HCG), colostrum, deer antler velvet, and amino acid/collagen supplements are recommended.

7) Disease Specific Exercise

Spinal fluid circulates in and around the brain and spine. It washes out biologic waste products such as inflammation. It also brings nutrients to the inflamed and/or damaged nerves for healing.

Exercises that enhance spinal fluid flow include walking, rocking in a chair, and gently bouncing. Practice exercises and stretches that will prevent tissue shrinkage, paralysis and dysfunction of your extremities or other organs that are specific for your underlying condition. 

All seven of these components should be considered for inclusion in an IPS care program. 

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and sponsors PNN’s Patient Resources section.  

Intractable Pain Syndrome Has 2 Kinds of Pain

By Forest Tennant, PNN Columnist

A major reason that persons with Intractable Pain Syndrome (IPS) experience such misery is that when pain is the constant, 24/7 variety, it has two parts: ascending and descending pain. Both types need to be treated for relief.

Picture your body running on electric currents. In your house, electric currents are conducted by wire. Although there is no good reason to avoid the term “wire” when it comes to the human body, we usually refer to our biologic wires as nerves, nerve roots or neurons.

Unfortunately, any disease or injury to one or more of our “wires” blocks the electric currents that normally flow through the nerves, nerve roots or neurons, and diverts electricity into the surrounding tissue to produce inflammation and pain.

Ascending Pain is caused when pain electricity travels from the disease or injury site up the nervous system to the brain. This is the most common type of pain. For example, if you have a sore knee, pain signals travel from the knee to the brain.

Descending Pain is caused when severe pain from any number of diseases and injuries sends so much electricity into the brain and spinal cord that it accumulates. Areas of inflammation develop and destroy and/or damage the dopamine-noradrenaline neurotransmitter systems that control descending pain.

The excess electricity from these inflamed sites travels down the nervous system into muscles, skin, tendons, joints, fatty tissues, and the large and small peripheral nerves. Small nerve endings in the skin can “burn out” due to all the descending electricity and a skin biopsy will probably show small fiber neuropathy.

How do you know if you have descending pain? You have muscle aches all over which are often labeled as fibromyalgia. You hurt everywhere and experience episodes of overheating, sweating, and cold hands and feet, often at the same time!

Tips to Reduce Descending Pain

The critical point is that usual pain treatment only treats ascending pain, not descending pain. Opioids, antidepressants, anti-inflammatories and muscle relaxants do not usually do much for descending pain.

Each person with IPS must adopt a few simple but specific medical, physical, and dietary measures to attain some relief and recovery from both kinds of pain. You must maintain your dopamine-noradrenaline neurotransmitter systems daily, or you will have increased pain and misery, and believe that more drugs like opioids are the answer.

The understanding of blocked and diverted electric currents has led to the identification and labeling of a group of treatment agents that help normalize electric currents. These are known as neuropathic agents. The neurotransmitter most responsible for the proper conduction of electric currents is called gamma aminobutyric acid (GABA for short). It is synthesized by the body from the amino acid glutamine.

Neuropathic medications include gabapentin, pregabalin, carisoprodol, topiramate, duloxetine, and benzodiazepines.

In addition to neuropathic agents, there are simple “age-old” remedies that still work for most people because they help modulate electric currents so that they don’t divert, accumulate, and cause more inflammation and pain:

• Water Soaking

• Epsom or Herbal Salts

• Magnets

• Acupuncture

• Copper Jewelry

• Walking Barefoot

• Dry Needling

• Petting Fur

• Magnesium

Every person with IPS needs a daily program of neuropathic agents and age-old remedies to minimize the consequences of accumulated electricity.

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and is currently sponsoring PNN’s Patient Resources section.  

What Does Intractable Pain Really Mean?

By Forest Tennant, PNN Columnist

Many people have chronic pain. If you are over age 60, you probably have some bothersome pain from arthritis, bunions, carpal tunnel, TMJ or a neuropathy. These common conditions cause intermittent pain which may be quite bothersome.

There are some unfortunate persons, however, who have terrible, grueling pain that just won’t go away. It’s there 24/7. It’s the kind that keeps you awake and makes you feel so sick you can’t read, think or socialize, and it will force you to take cover on the couch or in bed.

The pain can be primarily located anywhere on the body such as the hip, neck or back. But when it flares you feel it “all over” and it is intense.

This constant pain means you have a primary or underlying disease or injury that has emitted and sent so much electricity to the central nervous system (CNS) that inflammation forms inside the brain or spinal cord. The brain chemicals and neurotransmitter-receptor systems (NTRS) that normally control and shut down pain become damaged and impaired. The chemicals your own body makes for pain control, as well as pain medications, ​stop working correctly because of the damage to these chemical-tissue receiving sites.

Constant pain means you ​need a program or protocol to treat your basic injury or disease. One that reduces electric impulses and helps rebuild the damage to the NTRS in your spinal cord and brain. Symptomatic pain relievers are usually a must, but they don’t treat or reverse your basic problem.

Intractable Pain Syndrome

Due to new research, we now call the constant pain condition the Intractable Pain Syndrome (IPS). It’s called a “syndrome” because of the many manifestations of the condition.

IPS is a complication of a disease or injury. To obtain some relief and recovery, every person with IPS must know the name of the disease or injury that started the pain, and the anatomic location on the body that first sustained pain. Our studies have found that many persons with IPS don’t have a diagnosis for the cause of their pain and may have even forgotten the site on their body where the pain originated.

Common causes of IPS are:

• Adhesive Arachnoiditis

• Reflex Sympathetic Dystrophy (RSD) or Complex Regional Pain Syndrome (CRPS)

• Advanced Osteoarthritis

• Genetic Connective Tissue/Collagen Disorder (Ehlers-Danlos Syndrome)

• Traumatic Brain Injury (stroke, trauma)

• Autoimmune Disease

There are other rare causes of IPS, including porphyria, sickle cell disease, interstitial cystitis, Lyme disease and rare genetic disorders.

Vague complaints or diagnoses about back pain, headaches, sprains, strains or “pain all over” are not specific enough to get you much relief or recovery and can’t be considered a legitimate cause of IPS. That’s why it is important to know the specific cause of your pain. What was the specific diagnosis that warranted an epidural injection, surgery or an opioid prescription?

Regardless of what caused your IPS or how long you’ve had it, your original pain site is problematic and needs to be identified. The site is generating inflammation and electricity, and could be scarred in a way that blocks the normal flow of electricity through the body.

The major goal of the IPS Research and Education Project is to bring awareness that simple chronic pain and IPS are quite different entities. A second goal is to bring recognition, prevention and treatment of IPS into mainstream medical practice at the community level. IPS must be known, recognized and treated in the ambulatory medical system like any other long-term care problem such as rheumatoid arthritis, emphysema, diabetes, asthma, or schizophrenia.

It must also be done along with physical, psychologic and pharmaceutical measures that are acceptable to all concerned parties and that don’t require high, risky dosages of abusable drugs.

Forest Tennant is retired from clinical practice but continues his groundbreaking research on intractable pain and arachnoiditis. This column is adapted from newsletters recently issued by the IPS Research and Education Project of the Tennant Foundation. Readers interested in subscribing to the newsletter can sign up by clicking here.

The Tennant Foundation has given financial support to Pain News Network and is currently sponsoring PNN’s Patient Resources section.  

Great Progress Being Made in Treating Arachnoiditis

By Dr. Forest Tennant, PNN Columnist

About 5 years ago, most medical practitioners had either never heard of Adhesive Arachnoiditis (AA) or thought it was a spider bite. Today, almost all practitioners in the modern world have heard of AA. Many now understand it and some even treat it. A few are trying some innovative new approaches.

AA is a chronic inflammation that starts inside the spinal canal that can lead to severe suffering, neurologic impairments and a shortened lifespan. Once inflammation starts, it apparently never, or rarely, goes totally away.  

Treatment and prevention in recent years have greatly reduced the occurrence of some serious neurologic impairments and autoimmune complications of AA. The most obvious decrease in new cases reviewed by the Tennant Foundation are those of upper and lower extremity paraparesis (partial paralysis) and total paralysis, which are rapidly disappearing.

Urinary and bladder impairments that require catheterization are also hardly seen. And the autoimmune manifestations of arthritis, thyroid deficiency and carpal tunnel are disappearing.

Why the improvement? Awareness, thanks to patients, social media and advocates who have educated the medical profession about AA. Fewer epidurals, early treatment and emergency measures have all helped. The development of protocols for prevention, emergency intervention and on-going treatment have been essential.

Major Remaining Problems

Persons with AA are still having difficulty, in some communities, finding medical practitioners who are comfortable and willing to treat AA. The major complication is the development of constant pain and the intractable pain syndrome.

The key to preventing AA and stopping its progression is early treatment. Our research has clearly shown that AA is almost always preceded by one of 3 intraspinal canal inflammatory conditions:

1. Protruding, degenerated intravertebral discs.

2. Cauda equina inflammation.

3. Arachnoid inflammation (i.e. plain arachnoiditis) due to collagen disorders or needle injury.

Some intraspinal canal inflammatory disorders always precede AA. These disorders should be aggressively treated to prevent AA.

Select Corticosteroids Essential for AA

We believe all persons with typical AA symptoms and documentation of the disease on an MRI must take one of two corticosteroids (CS): methylprednisolone or dexamethasone for the spinal canal inflammation and pain of AA.

Currently there is no other medication agent that consistently and predictably suppresses intraspinal canal inflammation and reduces pain. Do not expect to halt progression or have much recovery if you do not consistently take a CS.

Dexamethasone and methylprednisolone are the preferred CS’s because they cross the blood brain barrier, enter spinal fluid and act on glial cells. Prednisone and hydrocortisone are not as consistently effective as dexamethasone and methylprednisolone, which should be taken in low doses.

1. Maintenance-low dose of dexamethasone (.5 to .75mg) or methylprednisolone (Medrol) 2 to 4 mg on 2 to 5 days a week. Skip days between dosages. An alternative is a weekly or bi-monthly injection of methylprednisolone or dexamethasone. Injections are usually the answer to corticoid sensitivity or gastric upset.

2. For flares, a 6-Day Medrol Dose Pak or an injection of methylprednisolone or dexamethasone, preferably mixed with a standard dose of injectable ketorolac.

The fear of corticosteroids comes from daily use of high doses, not from low, intermittent dosages. Some persons with severe asthma and rheumatoid arthritis must take a corticosteroid for years and don’t experience serious side effects.

Forest Tennant, MD, MPH, DrPH, is retired from clinical practice but continues his groundbreaking research on the treatment of intractable pain and arachnoiditis. This column is adapted from bulletins recently issued by the Arachnoiditis Research and Education Project of the Tennant Foundation. Readers interested in subscribing to Dr. Tennant’s bulletins should send an email to tennantfoundation92@gmail.com.

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

The Other Side of Chronic Pain

By Donna Corley, Guest Columnist

As I contemplated how to begin this article on a subject that has troubled me for some time, I continue to hear Paul Harvey’s famous tag line, “And now you know the rest of the story.”

I’ve noticed for a while that when we share our stories about life with chronic pain, we often focus on the physical struggles and lack of proper treatment, but leave out the emotional side. We rarely tell anyone how vulnerable and afraid we feel, especially our families and doctors, for fear of them thinking we are faking it or even a little crazy.

I’ve hidden that side of myself very well -- as have many of you -- and for good reason. But in doing so, I’ve only told half of my story and only shared half of who I am.

It is very hard to show vulnerability to anyone because we are judged by so many people. No one wants to be ridiculed for how they feel.

We should not be made to feel this way. None of us asked for pain conditions and diseases. Yet, we are shunned and doubted, and made to feel like we should not talk about the emotional side of our journey or the fear of “what comes next.”

That is the secret we hide from the world.

DONNA CORLEY

My story is a little unique in the sense of how long it has been. My journey started my senior year of high school, when I broke my back in a bad car accident. I was unaware that one accident could manifest into conditions called Adhesive Arachnoiditis (AA) and Tarlov Cyst disease. It took 23 years before I was properly diagnosed with AA. I still have moments when I think, “If only I was diagnosed sooner.”

I think there’s a big misconception about patients who suffer with chronic pain conditions, especially those with no cure. The public doesn’t realize that there is more to us than our pain. But if we don’t talk about our emotional torment, how could they know?

Living in Fear

Being a mother brings worry naturally. When you add massive pain with weird symptoms that make you feel like an alien has taken over your body, well that’s fear. Full-fledged, terrifying “I’m dying” fear. Fear brings anxiety, which brings doubt, and this can bring on depression. And it all started with pain no doctor could explain or diagnose, let alone treat!

The medical community is still being taught that Tarlov Cyst isn’t worth looking for in an MRI because they believe the disease doesn’t cause pain or other symptoms. That’s not true in my case at all. I went years before Tarlov Cyst was diagnosed and only because part of my pain couldn’t be explained. Even then the physicians refused to admit the Tarlov Cyst was causing any symptoms.

I can remember when my children were little having anxiety so severe that I would hyperventilate. Fear gripped me worse than the pain. Fear of dying and leaving my children. Fear that I had something terminal. No doctor wanted to dig deeper to find out what was wrong with me. My pain would be so severe at times it felt as if someone was ripping my spinal cord out, yet I kept this to myself.

I never told anyone the extent of my pain for fear of people thinking I was exaggerating, or worse, that it was all in my head. I quit driving for several years because I was scared my pain would become so severe I wouldn’t be able to make it home.  

Looking back, I see how pain ruled my life to the extent that it brought on major anxiety. I missed out on so many things with my children, their school functions, church, ball games, etc., all because of pain, fear and anxiety.

You learn how to hide your pain. Even if it means sneaking off to the bathroom to cry for a few minutes because you are hurting so much. You become a pro at clenching your jaw and smiling through the pain. Constant pain keeps us in a “fight or flight” state that can be very hard to manage alone.

I’ve seen doctor after doctor more times than I can count. They would all ask me, “Why are you here?” I finally stopped going. I stopped asking my primary care physician to refer me. What was the point? Physicians used to look outside the box to find answers, but it seems that “patient centered care” is gone. I had a doctor tell me a couple years ago that he couldn’t help me because I had too many health problems!

Doctors can’t always fix us, but their words and actions have lasting consequences, and some are just resoundingly bad.  Many patients have developed severe emotional trauma from being bullied by physicians who talk down to them like they were stupid and insignificant.

There is another important subject that everyone shies away from, even in patient support groups, and that’s sex. I can understand it being a sensitive subject, but it affects more patients than people realize. Whether it’s erectile dysfunction, the inability to have sex because of pain, or the inability to have an orgasm, these conditions can tear marriages and relationships apart. But the subject is not often discussed with physicians or even family members.

I had to give up a job and career I loved due to chronic pain and had to find a new purpose. That was a very hard part of my life. First, it was hard accepting that I could no longer work, and then it was hard accepting that I would be in pain for the rest of my life.

I thought it was a death sentence when I was first diagnosed with AA. Then I realized, “Hey, I’ve had it for 23 years and I’m not dead yet.” Being a quitter isn’t in my DNA, and I love my family too much to quit. I did a lot of praying, asking God, “Why me?” It was like he said to me, “I need you here.”

That’s truly when I began to have a passion, a drive to fight for awareness, to help other patients get a timely diagnosis and find new doctors.  Praise God, we have quite a few great ones, but we need more.

No one should be made to feel like they are crazy, ignorant, insignificant or lying because they are in pain. I’m still here trying to love the life God has blessed me with. Yes, I see my life as a blessing. If I had not been diagnosed with these diseases, I wouldn’t know how to empathize with others in pain.

We as patients should be able to discuss our fears and concerns with our physicians and families without fear of negative consequences. It is past time people quit condemning those of us who suffer in pain because of the way we feel.

Donna Corley is the director of the Arachnoiditis Society for Awareness and Prevention (ASAP) and creator of the Tarlov Cyst Society of America. She lives in Mississippi with her family.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

New Hampshire Law Protects Patient Access to Rx Opioids

By Pat Anson PNN Editor

Patient advocates around the country are looking with keen interest at a new law in New Hampshire that stipulates chronic pain patients should have access to opioid medication if it improves their physical function and quality of life.

HB 1639 was signed into law by Gov. Chris Sununu late last month. It amends state law to add some key provisions that protect the rights of both pain patients and their doctors.

Under the law, physicians and pharmacists are required to consider the “individualized needs” of pain patients, treat them with dignity, and ensure that they are “not unduly denied the medications needed to treat their conditions."   

Since the CDC’s controversial opioid prescribing guideline was released in 2016, dozens of states have adopted laws and policies that restrict the prescribing of opioids to the CDC’s recommended daily limit of 90 MME (Morphine Milligram Equivalent). Doctors who exceed that dose often come under the scrutiny of law enforcement and some pharmacists have stopped filling their prescriptions. As a result, millions of patients have been tapered to lower doses or cut off from opioids altogether, causing withdrawal, poorly treated pain and increased disability.  

Under the New Hampshire law, “all decisions” regarding treatment are to be made by the treating practitioner, who is required to treat chronic pain “without fear of reprimand or discipline.” Doctors in the state are also allowed to exceed the MME limit, provided the dose is “the lowest amount necessary to control pain” and there are no signs of a patient abusing their opioid medication.

“Ordering, prescribing, dispensing, administering, or paying for controlled substances, including opioid analgesics, shall not in any way be pre-determined by specific Morphine Milligram Equivalent (MME) guidelines.

For those patients who experience chronic illness or injury and resulting chronic pain who are on a managed and monitored regimen of opioid analgesic treatment and have increased functionality and quality of life as a result of said treatment, treatment shall be continued if there remains no indication of misuse or diversion.”

Importantly, the new law broadly defines chronic pain to include any pain that is intractable, high impact, episodic or relapsing — meaning the pain doesn’t have to be continuous.

“This innovative new law is historic in that it states that controlled substances, including opioids, can't be pre-determined by specific morphine milligram equivalents,” says Dr. Forest Tennant, a retired pain management specialist in California. “The law specifically states that patients can't be unduly denied the medications needed to treat their conditions. This point can't be over-emphasized.”

Another provision of the law requires that a diagnosis of chronic pain made by a physician anywhere in the U.S. that is supported by written documentation should be considered adequate proof that a patient has chronic pain. That part of the law is intended to make it easier for out-of-state pain patients to get treatment in New Hampshire.      

The law is the result of two years of lobbying by a small group of patient advocates known as the New Hampshire Pain Collaborative, which worked closely with state Sens. John Reagan and Tom Sherman in drafting the legislation. Key provisions eventually became part of the healthcare omnibus bill that won bipartisan support in the New Hampshire Senate and House of Representatives, and was signed into law by Governor Sununu.

Bill Murphy, a member of the Pain Collaborative, made this video to help other patients and advocates create similar legislation in their states:

“I would like to say a big congrats to all who worked on that project! Isn't it amazing what you can accomplish when you all work together?” said Donna Corley, director of the Arachnoiditis Society for Awareness and Prevention (ASAP), a patient advocacy group.

“Many patients aren't aware of just how important this bill truly is. This should have been enacted and should be implemented in every state in the United States to help secure safe, and reliable pain care treatment for all patients who suffer chronic pain in the United States. To be able to have diagnoses from other states and it be accepted by your doctor is phenomenal as well.”

“All concerned parties need to salute and follow suit of the New Hampshire law,” Dr. Tennant said in an email to PNN. “The tragedy of the recent over-reach to control opioid abuse, diversion, and overdoses has caused immense suffering for legitimate, chronic pain patients, an epidemic of suicides among deprived pain patients, and the forced retirement of many worthy physicians (including yours truly). All this ugliness would have been prevented with the New Hampshire law.”

According to the CDC, New Hampshire physicians wrote 46.1 opioid prescriptions for every 100 persons in 2018. That’s well below that national average of 51.4 prescriptions. That same year, 412 people died of drug overdoses in New Hampshire, the vast majority of them involving synthetic opioids such as illicit fentanyl and other street drugs.  Only 43 of those 412 deaths involved a prescription opioid.  

Tennant Foundation Launches Intractable Pain Research and Education Project

By Pat Anson, PNN Editor

One of the pioneers of pain management in the United States is hoping to draw more attention to intractable pain and how it differs from chronic pain. While chronic pain lasts for 90 days or more, intractable pain can persist for years, decades or even a lifetime. Many doctors fail to distinguish between the two, which leads to gaps in diagnosis and treatment.

“The pain field has been woefully negligent about this. They talk about symptomatic treatment of what to do to relieve chronic pain, but in order to deal with intractable pain syndrome you’ve got to treat the underlying cause,” says Dr. Forest Tennant, whose foundation has just released a new report called “The Intractable Pain Syndrome: A Call for Recognition and Prevention.”

“We’ve worked on it for quite some time with the goal of having every patient, doctor, nurse and family understand it. And to try and bring things out in language that is understandable by everybody.”

“This was a labor of love for all of us, born from a sincere desire to bring recognition, treatment and prevention to this devastating syndrome,” says co-author Ingrid Hollis, whose son was treated by Tennant for Arachnoiditis and Ehlers-Danlos Syndrome. “We have learned so much through the years, and I believe there is much that can be done to prevent intractable pain syndrome from developing and progressing when it occurs.”

“One of the reasons we’re doing this is to call for early recognition and vigorous treatment,” Tennant told PNN. “Someone who has this for two, five or twenty years, you can’t expect much reversal. But those people who have these conditions for six months or a year, they have a great ability to reverse a great deal of this. The earlier the treatment, the better the outcome.”

Left untreated, Tennant says intractable pain syndrome (IPS) can lead to chronic inflammation in the central nervous system that is difficult to reverse.  The inflammation not only causes constant pain, it leads to loss of brain tissue and creates dysfunction in the neurologic, cardiovascular, hormone and immune systems.  

“We’ve known for centuries that a painful injury will create what amounts to electricity. And too much electricity causes inflammation and inflammation causes tissue destruction,” says Tennant. “Intractable pain syndrome does change their basic physiology by virtue of altering physically the neurotransmitter systems that are in the brain and spinal cord. That is really the difference. And this is very objective. It’s measurable. It’s visible. It’s clear when its present.”

Tennant says these “pockets” of inflammation can be seen on MRI’s and brain scans. Someone suffering from simple chronic pain won’t have them, but people with intractable pain will.

There are five basic conditions that can cause IPS:

1. Arachnoiditis, a chronic inflammation of spinal nerves

2. Genetic connective tissue/collagen disorders such as Ehlers-Danlos Syndrome (EDS)

3. Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS)

4. Brain injuries caused by strokes or head trauma

5. Serious end-stage osteoarthritis of the spine, hips, knees or feet.

Other possible causes of IPS are porphyria, sickle cell disease, Lyme disease, interstitial cystitis, and some rare genetic disorders.   

IPS Can Be Reversed

Long recognized as incurable, Tennant says intractable pain can be reversed if diagnosed and treated early. He has pioneered some new treatments for IPS, including hormone supplements, physical therapy and better nutrition.

“Our project hopes to educate people about what they can do to reverse a lot of this,” Tennant told PNN. “Step number one is you’ve got to have vigorous treatment of the underlying cause of pain. The arachnoiditis has to be treated. The arthritis has to be treated. The RSD has to be treated. In other words, vigorous treatment of the underlying condition.

“Step number two, there are specific things they can do to slow down the inflammation inside the central nervous system. We know the body makes hormones inside the brain and spinal cord that can reduce the inflammation inside the central nervous system and regrow some of the tissue that’s been lost. People say you can’t do that, but oh yes, you can. There are studies that show this and we see this clinically.”

“I strongly believe that Dr. Tennant's concept of how intractable pain develops and progresses is absolutely correct.  His work in identifying the causes, developing diagnostic criteria, and figuring out a treatment protocol provides what doctors need to know to help people with intractable pain,” says co-author Kristen Ogden, whose husband Louis was treated by Tennant for a complex autoimmune condition.

“Louis' treatment with Dr. Tennant allowed him to improve so much in so many ways. Very effective pain control, greatly improved function and the best quality of life he ever had as an adult.  I am sure that very few people have any idea at all how much a seriously ill pain patient can improve and even regain lost function and capabilities if they have the right medical regimen that meets their needs.”

Tennant retired from clinical practice in 2018, the year after his home and office were raided by the DEA as part of an investigation into his opioid prescribing. No charges were ever filed against him. While Tennant no longer sees patients, he is continuing his research into the treatment of IPS – which notably downplays the use of opioids.

“The answer to opioid use is treating the syndrome rather than just giving symptomatic relief. Opioids are symptomatic drugs,” explains Tennant. “What we’re saying is, identify this and try to treat the condition. Don’t just throw a bunch of symptomatic antidepressants, opioids and other interventions at it. Start trying to look at it physiologically and pathologically, and treat it like we do other syndromes.”    

To learn more about the Tennant Foundation’s Intractable Pain Syndrome Research and Education Project, click here. 

Dr. Tennant and the Tennant Foundation have given financial support to Pain News Network and are currently sponsoring PNN’s Patient Resources section.  

Nitrous Oxide Safe for Labor Pain, But Few Women Stick With It

By Pat Anson, PNN Editor

A new study is touting an older form of anesthesia for women going through labor pain. Researchers at the University of Colorado College of Nursing say nitrous oxide – commonly known as laughing gas – is a safe and effective option for pain relief.

Their study, published in the Journal of Midwifery & Women's Health, is based on a survey of 463 women who used nitrous oxide (N2O) during labor.

"Nitrous oxide is a useful, safe option for labor analgesia in the United States. And for some laboring mothers, that's all the pain relief they need,” said lead author Priscilla Nodine, PhD, a Certified Nurse-Midwife and Associate Professor with the University of Colorado College of Nursing.

Nitrous oxide was once widely used in American hospitals to relieve labor pain, but it fell out of favor as more Caesarean sections were performed and women opted for epidural injections and spinal blocks, known as neuraxial analgesia.

Some hospitals are now reintroducing nitrous oxide as a safer and less invasive option. The inhaled gas helps reduce anxiety and makes patients less aware of their pain, but does not eliminate it. 

While side effects from nitrous oxide were rare (8%), less than a third of the women studied stuck with it. Sixty nine percent wound up using neuraxial analgesia or opioids during labor. The reason most often cited (96%) for converting from N2O to another therapy was inadequate pain relief.

Women who had previously given birth vaginally were more likely to stick with nitrous oxide, while those who had a Cesarean section were six times more likely to use neuraxial analgesia. The odds of conversion from N2O tripled when labor was induced or augmented with oxytocin, a hormone that helps women bond with the baby and stimulates milk production.

“Understanding predictors of conversion from inhaled nitrous oxide to other forms of analgesia may assist providers in their discussions with women about pain relief options during labor," said Nodine.

The findings are similar to a 2019 study, which found that nearly 70 percent of the women who tried nitrous oxide switched to an epidural or another pain management method.  

Epidurals allow mothers to stay awake and alert throughout delivery. But they are not without risks. A poorly placed needle can damage the spine permanently, as Dawn Gonzalez learned years ago.

“The blind insertion of the epidural during birth is basically playing roulette for spinal damage. Normally birthing mothers are told the only side effect possible during epidurals is a spinal headache that lasts a few days,” said Gonzalez, who developed adhesive arachnoiditis, a chronic and disabling inflammation of her spinal nerves.  

“Every woman deserves to know that when she opts for any kind of invasive spinal anesthesia, the risks are very grave and by far much more common than anybody realizes.”

The American Society of Anesthesiologists has defended the use of epidurals, calling them “one of the most effective, safest and widely used forms of pain management for women in labor.”

Arachnoiditis Nearly Destroyed My Life

By Robert Perry, Guest Columnist

I was a pipe welder when I first hurt my back in 1992. The doctor ordered a myelogram imaging test on my back with a chemical dye. It was one of the most painful tests I ever had. After the test the doctor told me I had to learn to live with my pain. At that time, I was only 27 years old. The doctor told me I might be able to work for another 15 years.

He was right about that. In 2008, I was a project manager at ATT and started losing the ability to use my legs. One day I couldn’t get out of bed for about 3 hours because I was having so much pain in my legs and lower back. I was screaming from the pain and the muscles spasms were so bad it made me cry.

I started falling at work and hurting so bad it was unreal, so they did an MRI on me and found I had Arachnoiditis. Since then my life has been a hard road. It’s unreal how many doctors don’t know anything about this disease. One doctor did 5 epidural steroid injections on me and made it worse.

Another doctor put a spinal cord stimulator temporarily in my back to see if it would help, but he accidentally punctured my spine and left an air bubble. I went home and late that night got a terrible headache that felt like it was killing me. My ex-wife and kids took me to the emergency room. I was about to die from the bubble in my body.

They finally found the bubble in my body by cat scan. The only way you can get a bubble out is to remain really calm, so they started giving me a strong painkiller in an IV drip.  But the nurse wasn’t paying attention and I overdosed. I knew I was dying and thank God that a person came in to clean my room and I got her to go get help.

ROBERT PERRY

I had her call my family on my cell phone. I was able to tell my family goodbye. Right after that, I lost consciousness. I finally woke up 8 hours later and the doctor was waiting on me to ask me things to see if I had any brain damage. The first thing I asked was for my dad, but I couldn’t remember that my dad was dead until they told me.

I have been through a lot because of Arachnoiditis. I lost my family and now I am married to a wonderful lady who knows I am a very sick person.  This disease is the one of the most painful. I have to take two shots a month and I am on a lot of meds. I have a good doctor now who put me on a fentanyl pain patch and my life has been a lot better.

I am a preacher and have a lot of faith. One night at church I was in so much pain the congregation was about to take me to the hospital. And I told God that night either heal me or take me. They prayed over me and I walked out of the church without any pain or my cane.

That’s was 5 years ago and I am still doing a lot better and able to live now. The doctors can’t help, but God can. I am very thankful for that night in prayer.

Arachnoiditis nearly destroyed my life. I hope they one day find a cure for this terrible disease. Before God touched me that night, I was about ready to take my life because of the pain.

Robert Perry lives in Kentucky.

PNN invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.