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

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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.

Last updated on: November 9, 2017
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