Who Develops Intractable Pain Syndrome?

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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.