How to Recognize and Treat Intractable Pain

By Dr. Forest Tennant, PNN Columnist

The realization that a subgroup of chronic pain patients has intractable pain is finally spreading. Over half a dozen states now have laws protecting intractable pain (IP) patients and Wikipedia refers to IP as a disease that causes “a severe, constant, relentless, and debilitating pain.”

A major impediment to treatment of IP is simply that it is not commonly recognized by either patient or practitioner. Basically, the concept that pain alone can cause serious medical complications is not yet appreciated. This fact is evidenced in product advertising and lay person media articles about “chronic pain.” A close analysis implies that everyone has simple chronic pain and needs a “one size fits all” treatment.

The fact is that the IP subgroup of patients isn’t recognized by even the most sophisticated and prestigious medical institutions. For example, I hear almost daily about a person with IP who has severe hypertension, tachycardia, or even angina without any recognition that IP is the culprit.

Other examples are persons with IP who have hormonal deficiencies. Medical practitioners are treating their patients for such hormonal complications as osteoporosis, impotence, and depression, with no recognition that IP is the cause. Regrettably, some persons have had their pituitary or adrenal removed for a “tumor” when in reality the gland was over functioning and enlarged due to IP.

About half of the persons who develop IP have a genetic or inherited disorder. The most common high risk genetic conditions are Ehlers-Danlos Syndrome (EDS), ankylosing spondylitis, and scoliosis.  Other genetic, but less common, risk disorders include Marfan Syndrome, porphyria, and autoimmune diseases such as rheumatoid arthritis and ulcerative colitis. 

How IP Starts 

Thanks to research and studies in recent years, there is now an understanding of the pathologic sequences that lead to IP.  Basically, IP is the end product of multiple events and conditions that may affect a person.   

IP always has a starting or painful initiating event which is either traumatic or inflammatory. Typically, the initiating event takes place several months or years before IP symptoms develop. 

The most common traumatic events are falls, altercations or surgery. Trauma may be to the head, spinal cord, or a nerve in the arm or leg.  The most common initiating inflammatory disorders are fibromyalgia, severe respiratory infection or arthritis. 

The initiating event doesn’t usually cease but “smolders on” with pain that comes and goes.  A diagnosis of chronic pain is likely assigned, and a wide variety of medications and other measures are attempted.   

Interestingly, an initiating inflammatory event such as arthritis or fibromyalgia may seemingly spread. The person may develop additional inflammatory disorders such as thyroiditis, carpal tunnel syndrome, migraine, and irritable bowel. 

Trauma may be severe or minor and the sequelae quite variable. Neuropathies or intervertebral disc degeneration and herniation are the most common traumatic complications that lead to IP.  Pain after the initiating event is usually not constant, but at some point becomes constant. 

This constancy is associated with inflammation that develops in the brain and/or spinal cord of the central nervous system (CNS). Cells called glia or microglia promote CNS inflammation, which can damage the neurotransmitter-receptor systems that control pain.   

Exactly how injuries and inflammatory disorder activate glial cells to produce CNS is unclear. The two most discussed mechanisms are excess electromagnetic energy generated in the injury and inflammatory sites, and autoimmunity or viral invasion of CNS tissue.  The Epstein Barr virus is the most likely virus.

The first chapters of my new book, “Handbook for Intractable Pain,” are dedicated to how to recognize IP symptoms. The second section is a step-by-step treatment program of self-help.

IP doesn’t have to thrust a person into misery and a short life if a three-component protocol is followed:

1. Suppression of inflammation and autoimmunity

2. Restoration of damaged tissues

3. Pain control

To carry out this protocol, one has to become knowledgeable about IP and build, over time, an effective therapeutic program.

Forest Tennant, MD, DrPH, is retired from clinical practice but continues his research on the treatment of intractable pain. To Tennant Foundation has launched a new website, IntractablePain.org, where you can learn more about the conditions that cause intractable pain and their many complications.

The Tennant Foundation gives financial support to Pain News Network and sponsors 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.