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9 Articles in Volume 17, Issue #9
Can Physiological Profiles Affect Pain Treatment?
Editorial: Moving Forward from Trump's Opioid Declaration
How Might Pain Practitioners Best Offer Patients Relief Without Pharmacology?
Letters to the Editor: An opportunity to learn what is on the minds of your colleagues and patients
Lumbar Lordosis and Back Pain
Oxytocin, an Opioid Alternative, Ready for Regular Clinical Use to Manage Chronic Pain
Pain, Sleep & Suicide: The Core Role of Interventional Care
Spiritual Factors Impacting a Patient’s Ability to Cope with Uncertainty (Part 3)
The Inter-Connection between Smoking and Opioid Misuse

Letters to the Editor: An opportunity to learn what is on the minds of your colleagues and patients

As a patient with chronic pain, I read Practical Pain Management regularly. Given the recent action of the so-called Physicians for Responsible Opioid Prescribing (PROP), I was curious about how Dr. Tennant might have viewed the letter of request sent by PROP to the Government Regulations Division of the Food and Drug Administration (FDA) making a recommendation to have oral and mucosal opioids removed from the market immediately.1 Legislation in my state now limits opioids to patients with cancer pain, in hospice care, or during drug trials.

Those of us with long-term, chronic pain are being cut off—no tapering—just left in agony. It has made me wonder why a group of physicians who have taken an oath to “Do no harm,” would consider it responsible and constructive to take such a strong and divisive stance as to suggest that the FDA fully eliminate a type of medication that has served many of us with chronic pain conditions very well over the long-term?

Dorene Ernst, Springfield, VA

Dear Dorene,

There are no words I can offer for the miscalculations of a physician-
based group to attempt to legislate opioids away from patients with chronic pain ailments, and a valid need to receive appropriately prescribed pain medication.

Also, I appreciate your concern about the action taken by PROP, even more so given the extreme limitations you’ve described regarding opioid prescribing in Virginia.

Since you asked, I do not support the positions taken by PROP advocating for harsh restrictions to prescribing of high dose opioid medications.1 I am concerned that the efforts of this organization appear to be a concerted attempt to reduce, or even worse, to stop the prescribing of any and all opioid medications in the United States.

Initially, I believed PROP would recognize that there are some untrained and unknowledgeable physicians who were prescribing opioids other than as a “last resort” pain reliever for appropriate patients with long-term chronic pain conditions. Given that sufficient time has passed, the campaign waged by PROP has been, in a word, irresponsible. At no point, to my knowledge, has PROP offered an alternative to opioids or acknowledged that there are responsible patients who have medical conditions that leave them with severe, intractable chronic pain for which high-dose opioids have proven effective. These same patients have been following their physicians' advice and have demonstrated compliance with their medication regimens such that they are able to sleep, work, complete activities of daily living, and otherwise get out of bed without excruciating and unremitting pain.

Most perplexing for me is that PROP seemingly has failed to recommend a need to train and certify select physicians to prescribe high-dose opioids. In considering your question with regard to this organization’s efforts to eliminate prescription opioids for legitimate pain patients, I believe the needs of individuals with chronic pain should come first. You might consider writing to the FDA to share your concerns.

Forest Tennant, MD, DrPH

Ehlers-Danlos Syndrome is Real

As both a patient with a chronic pain condition and a healthcare professional.it has taken me more than 40 years to find a clinical source for my chronic fatigue, neuromuscular and neuropathic pain, severe edema, and undesirable changes in my skin color. The pain I live with now is the same pain that woke me up crying as a five-year-old.

Since I was adopted and had no family medical history, my parents had no idea what to make of my symptoms. As a very young child, my complaints were chocked up to “growing pains.” Since I was very active, I accepted the pain as tight muscles or perhaps because I was more “muscular” than my friends.

Finally, at the age of 31 years, I was diagnosed with fibromyalgia, yet it has taken more than 20 years for me to receive a diagnosis of secondary adrenal insufficiency, joint hypermobility syndrome, and idiopathic small fiber neuropathy, dystonia, dysautonomia.

As a nurse, I knew my symptoms were abnormal—asymmetric reflexes, hypereflexia or no reflexes, nystagmus—so I kept searching for a proper diagnosis with a singular purpose that I might finally gain relief from this constant pain.

Despite the long list of medical ailments, I do not have diabetes. I do not drink alcohol, and do not take opioids because I have experienced severe sensitivities to both mediations and foods. Also, I have always had a fever (elevated temperature).

A bladder biopsy indicated the presence of bladder edema, plasma cells and lymphocytes, and an optical coherence tomography scan confirmed optic neuropathy and congenital small optic nerves. In addition, I have been diagnosed with Hashimoto’s thyroiditis. A functional magnetic resonance imaging (fMRI) revealed an athletic puebalgia with pudental nerve neuritis and tendonitis, among other related abnormalities.

In addition, I was diagnosed with low lying cerebellar tonsils, scoliosis, and Schmorls nodes in multiple areas of my thoracic spine with boney island lesions. An upright fMRI revealed a herniated disc from C2 to C7 that wasn’t evident in the horizontal MRI, which only indicated a herniation from C5 to C7 herniated disc, and new cord flattening of my cervical spine with congenital right and left conjoined lumbar sacral nerves, abnormal facial nerves and rectal monometry, a Tornwaldt cyst, and calcified stylos thyroid ligaments.  

Key laboratory findings included: Epstein-Barr antibody titer that went from 9.6 to > 750 IgG; an elevated cluster of differentiation 4, or CD4 lymphocyte count, and a very low level of CD56 cells.

All of these positive findings were discovered through my dogged research and an unrelenting desire to find an explanation for my steadily declining health. After decades of constant pain and dysautonomia (a dysfunction in my autonomic nervous system), an organic cause was confirmed. It was not depression; the cause of my physical ailments was not in my head.

At present, I am receiving intravenous immunoglobulin and hydrocortisone (IVIG). My next step is to seek an evaluation for Ehlers-Danlos Syndrome (EDS).2

I cannot emphasize the compelling need for pain practitioners to listen more closely to patients; they can be great teachers. Many of my doctors rebuffed my pointed questions, resenting my attempts to challenge them. Yet, research has shown that patients who present with systemic pain syndromes will likely reveal immunological, endocrine, and mitochondrial abnormalities.

Given your keen interest in EDS, I would welcome your clinical insights, as much for my benefit as for the many pain practitioners who may benefit from learning about a challenging patient.

Caroline Kosmin, RN Pennsylvania

Dear Caroline,

Without having met you, it is quite evident that you have presented a detailed, descriptive history of EDS. No textbook could offer a better description of this poorly understood, genetic pain disorder. In Practical Pain Management, I have made a concerted effort to draw attention to this long overlooked medical condition.2 In my opinion, EDS is likely to be the number one genetically based pain disorder to present for most pain practitioners.

As for treatment with IVIG and plasmapheresis, although I am not aware of any clinical reports involving these treatments, I would agree they are worth trying. To date, efforts to determine a valid treatment for EDS have been woefully inadequate.  The clinical literature seems resigned to a position that this generic pain condition cannot be treated but I disagree. From both a personal and clinical standpoint, and with an understanding of EDS as a connective tissue disorder that produces micro-tears in tissue, a viable management strategy should be possible. Fundamentally, EDSis a progressive catabolic state in which fragile tissues found in the mouth, spine, and cartilage are usually among the first to degenerate. Besides tissue degeneration, EDS-related pain may become centralized and degenerated tissue may become an autoimmune disorder.  In my own practice, we have achieved substantial clinical improvement with a variety of anabolic strategies.

While researchers and clinicians have our work cut out for us, it is my hope that the growing awareness of this genetic disorder will lead to innovative measures that will help patients gain a diagnosis much earlier than was your experience.

Forest Tennant, MD, DrPH

More EDS Resources Needed

I am a physician assistant (and athletic trainer) whose practice focuses on pain management. I have relied on information from the Practical Pain Management website both personally and professionally. As it happens, I have hypermobile Ehlers-Danlos Syndrome (EDS), and recently had the opportunity to do a presentation on EDS for a few of our physicians. Given the encouraging response from these practitioners, I concluded that identifying healthcare providers who are comfortable treating patients with this genetic disorder locally for referral to ensure capable care.

However, I have been unsuccessful in my effort to find enough pain specialists on this side of the country, so I have started giving guest lectures at the University of La Verne and Western University of Health Sciences in California, my alma maters.

I am gathering contact information for local mid-level providers in order to host a semi-annual meeting to advance the proper diagnosis and treatment of Ehlers-Danlos Syndrome for my colleagues in pain management and related fields. Hopefully, this effort will afford more patients the multidisciplinary care that is necessary to effectively manage EDS. I welcome any guidance or recommendations that will help advance the clinical care of patients with EDS.

Brianna Cardenas, MS, PA-C

Colton, CA

Dear Brianna,

I applaud your initiative and much-needed leadership as you are doing precisely what is needed to finally bring attention to and relief from Ehlers-Danlos Syndrome. Every medical practitioner would benefit from knowing the proper screen process for EDS as well as to be aware of its possible progression.  I have only recently determined that some of the patients who I have been treating for 15 years for chronic headaches, and muscular and joint pain, actually had EDS as the root cause. You are proceeding admirably and I can only hope that others will join you in leading seminars and expand training to hasten the diagnosis and treatment of patients whose cause of pain arises from underlying EDS.  

Forest Tennant, MD, DrPH

Pain Care for Arachnoiditis

I have been impressed with Dr. Tennant’s groundbreaking treatment approach to the intractable chronic pain caused by arachnoiditis. I have lived with this painful condition following a failed double lamenectomy. After 28 years of taking prescribed extended-relief morphine that has left me highly dependent, I was denied morphine and left to go through physical withdrawal without any clinical support.

Since then, I have been to four pain management clinics and in every instance, they chose to minimize the seriousness of my pain complaints, ignore my request to address my unrelenting, intractable pain. Without any pain relief, I have become bedridden.  Can you recommend a way forward?

Nicola Jack, Minneapolis, MN

Dear Nicola,

Let me first express my personal sadness and remorse over your inexcusable plight, to say nothing about your needless suffering. In truth, there are no regulations, guidelines, or laws that require, recommend, or even suggest that a patient who is experiencing intractable pain due to arachnoiditis, have no access to morphine. Practical Pain Management has published as much and will continue to condemn the withdrawal of opioids from patients who have a severe, chronic pain condition.3

In the event that you have not found help by the time you read this, I encourage you to reach out a new organization, Families for Intractable Pain Relief. The website, www.familiesforiprelief.com, should be live by the end of the year. I have been lending my support to develop a group to help place and guide patients like you.

My goal is to see this organization grow into a national referral network to recognize the needs of so many patients who are suffering from intractable pain. If you are able to do so, I also urge you to contact your state medical board as well as your congressional representatives to let them know you have been deprived of much-needed medication that enables you to live with long-term chronic pain.

Forest Tennant, MD, DrPH

Last updated on: November 9, 2017
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How Might Pain Practitioners Best Offer Patients Relief Without Pharmacology?

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