How to Recognize and Treat Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

About one year ago we launched our Intractable Pain Syndrome (IPS) Research and Education Project to bring awareness, diagnosis and treatments to persons who have this merciless condition. Much has been learned in the past year. 

Our original impetus and investigation of chronic pain revealed that some rare patients transform from a state of periodic pain to constant, never-ending pain. Once this constant intractable pain begins, patients often deteriorate, become reclusive, have a shortened life, and some may even commit suicide. Why and how this transformation occurs remained a mystery for many years. 

A major research advance in the past year is the role of autoimmunity, which is the presence of antibodies in the blood that attack one’s own tissues. Autoimmunity is so universal in IPS that we now believe that autoimmunity, plus excess electrostimulation from a disease or injury,  to be the root cause of transformation from simple chronic pain to IPS.  

Recognition of IPS 

The number one challenge in managing and controlling chronic pain is to determine if a person has transformed from simple chronic pain to IPS. Although the scientific documentation is quite sound, there is some resistance in the medical community to the discovery that chronic pain can cause a profound biologic change in multiple bodily systems. These changes may be called “alterations” or “complications,” but the fact is that a chronic pain condition can morph into IPS with cardiovascular, endocrine, and autoimmune manifestations.

The table below shows some of the differences between IPS and simple chronic pain:

The Importance of an IPS Diagnosis

The most common complaint that we receive from persons with IPS is that they can’t get enough opioid and other pain relief medications. The federal government, state medical boards, malpractice insurance carriers, and other health insurers often restrict the number of pills and dosages that can be prescribed and dispensed. As a result, many pain clinics and specialists will only do interventional procedures such as injections or implant stimulators, and will only prescribe limited amounts of opioids, if any.

In order to obtain opioids and some other drugs, particularly benzodiazepines, persons with IPS will need diagnostic tests and a specific, causative diagnosis to prove they have a legitimate medical disorder that will permit their physician to prescribe limited amounts of opioids and benzodiazepines. The major causes of IPS are:

• Adhesive Arachnoiditis

• Connective tissue or collagen disorder (Ehlers Danlos Syndrome)

• Stroke or traumatic brain injury

• Arthritis due to a specific cause

• Neuropathy due to a specific cause (CRPS, cervical, autoimmunity)

Less prevalent, but serious causes of IPS are sickle cell disease, porphyria, pancreatitis, abdominal adhesions, interstitial cystitis, and lupus. 

Your primary diagnosis will have to be validated by MRI, X-ray, biopsy, and/or photographs. Medical records must document the diagnosis. You should have a hard copy and hand-carry a set of your records to all medical appointments.

These diagnoses will not usually be acceptable to obtain opioids because they are too “non-specific” or general:

• Failed back syndrome

• Degenerative spine

• Fibromyalgia

• Central pain

• Headache

• Neuropathy.

How to Cope with Opioid Restrictions

Most local physicians are still able to prescribe two weak opioids: tramadol and codeine-acetaminophen combinations. While weak, they are better than nothing, and you may be able to build a pain control program with one or both medications.

If you have good medical records that document the causes and complications of your IPS, some medical practitioners will prescribe these opioids: 

1. Hydrocodone-acetaminophen (Vicodin, Norco) 3-4 a day 

2. Oxycodone-acetaminophen (Percocet) 3-4 a day 

3. Oxycodone alone, 2 to 3 a day

You may be able to boost the potency of opioids with what is called potentiators and surrogates. These drugs and supplements have opioid-like effects known in pharmacology as “opioid activity.” They can be taken separately between opioid dosages, or they can be taken at the same time, to make your opioid stronger and last longer.

• Kratom

• Palmitoyethanolamide (PEA)

• Cannabis/CBD

• Taurine

• Amphetamine Salts (Adderal)

• Tizanidine

• Methylphenidate (Ritalin) 

• Clonidine

• Diazepam 

• Carisoprodol

• Ketamine

• Oxytocin

Although the restrictions on opioids and benzodiazepines are perhaps unfair and an over-reach for legitimate persons with IPS, there are steps you can take to function with these restrictions.

One is to build a comprehensive, healing, and tailor-made program that will allow you to cope with fewer opioids and benzodiazepines. We’ve written previously about the importance of an IPS nutrition program. Pain relief medications are not very effective unless you have good nutrition.

There are also exercises and physical measures you can take that enhance pain control, such as walking, arm and leg stretching, water soaking, deep breathing, rocking, and gentle bouncing. Supplements can also be taken to help suppress inflammation and autoimmunity, regenerate nerve tissue and provide some pain relief.

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

Why Good Nutrition Is Needed for Intractable Pain Syndrome

By Forest Tennant, PNN Columnist

If you have Intractable Pain Syndrome (IPS) or a condition that commonly causes IPS, such as arachnoiditis, adhesive arachnoiditis, cauda equina syndrome, Ehlers-Danlos Syndrome, traumatic brain injury, stroke or Complex Regional Pain Syndrome (CRPS), you should underpin your treatment program with a nutritional one.

Our research and experience clearly tell us that a proper nutrition program is essential for pain relief and to prevent the progression of IPS. Without a good nutritional program, neither medication or other medical measures will be very effective.

Persons who have IPS develop what is known as a “catabolic state.” The term means that the cellular matrix of the body is slowly degenerating, rather than its normal state of constant cellular regeneration, known as an “anabolic state.”

In IPS, cells and tissues inside and outside of the brain and spinal cord (CNS) progressively degenerate because of IPS’s combined effects of inflammation, hormonal deficiencies, and autoimmune attacks on tissues. If one has a genetic connective tissue/collagen disorder (EDS or other), then cellular catabolism or deterioration is grossly multiplied.

Cellular deterioration in IPS initially attacks small nerve fibers and the small cells in the CNS and skin, but later other tissues may be involved. Muscle mass deteriorates and is replaced by fatty tissue, so weight gain occurs. In late stages of catabolism, severe muscle loss may occur, giving the patient the appearance of starvation and emaciation. Weakness and fatigue set in. Memory, reading ability and logical thinking decline. Medications, including opioids, may not be as effective as they once were.

Persons with IPS must daily attempt to control catabolism through proper nutrition, which helps stop disease deterioration, reduces inflammation, regrows damaged nerves (neurogenesis), alkalizes body fluids, and improves pain relief and energy.

There are five basic components of an IPS nutrition program:

1. Eat protein every day and include protein in ALL meals.

2. Eat green vegetables, and select fruits and nuts

3. Control cholesterol and glucose

4. Daily multi-vitamins and minerals

5. Daily supplements for nerve regrowth and inflammation

Protein is Key

The most critical component of an IPS nutrition program is protein. IPS tends to decrease a desire for protein and promotes a craving for sugar and starches. The major protein foods are beef, pork, lamb, chicken, turkey, seafood, cottage cheese and eggs. Protein drinks and bars can also be used as alternatives.

Why is protein so important? It contains all the fuel (amino acids) needed by the body to make more endorphin, serotonin, dopamine, norepinephrine, insulin and other hormones. Protein builds tissue, repairs cells and helps stabilize blood sugar. Meals with no protein will likely increase pain and inflammation, which prevents healing.

Foods that are mainly sugar and starches (carbohydrates) cause sugar (glucose) to rise in the blood. Fatty foods cause cholesterol to raise in the blood. New research shows that high levels of glucose and fat may cause inflammation and damage to the neurotransmitters and receptor systems that control pain. 

IPS patients should have their glucose and cholesterol levels tested on a regular basis. If abnormally high or low, work with your medical practitioner to normalize them.  

You can help by reducing sugars and fats in your diet, and by eating meals on a regular schedule, even if you are not hungry. This will help balance your glucose and lessen your pain over time.   

You may also want to consider a gluten free trial. Stop eating bread, cereal, noodles and other foods containing gluten for one week to see if you feel better. 

Green Is Good 

Vegetables, fruits and nuts can also help reduce inflammation, alkalinize your body fluids, and promote tissue healing. The best green vegetables are broccoli, kale, brussel sprouts, asparagus, green beans, spinach, snap peas, chard, mustard greens, turnip greens, collards, and cabbage. Avoid eating potatoes and corn, which are loaded with carbohydrates. 

The best fruits are blueberries, pineapple, raspberries, blackberries, cherries, oranges, plums, apples, strawberries, and peaches. Avoid eating bananas. The best nuts to eat are pistachios, almonds and peanuts. 

To help regrow damaged or diseased tissues, take daily supplements containing vitamins B12 and C, collagen, amino acids and natural hormonal agents such as colostrum or DHEA. A daily multi-vitamin and mineral tablet is also helpful, along with a daily plant-based anti-inflammatory agent such as curcumin/turmeric or quercetin. 

Ask yourself: Is what I am eating right now helping or hurting? If you don’t know or want more information, the IPS Research and Education Project has just published a 12-page nutritional program designed specifically for people with IPS. You can download a free copy by clicking here.  

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 gives 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.