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:
Hydrocodone-acetaminophen (Vicodin, Norco) 3-4 a day
Oxycodone-acetaminophen (Percocet) 3-4 a day
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.