The odyssey against a rare cause of pain – 09/04/2023 – Luciano Melo

Rare diseases are common, chance explains. There is a risk that an unusual error is in at least one of thousands of genes in at least one of our billions of cells; a chance that renews itself with each new cell.

Scattered around there are poisons, toxins, radiation, microorganisms, which, unfortunately for you, can find you and almost no one else. It is estimated that 3.5 to 6% of the world’s population will be affected by a rare disease. Half of the people in this vast group will never receive a proper diagnosis. The other half with a different fate will probably go through an epic journey full of unnecessary tests and useless treatments until the correct diagnosis is reached.

Ulisses is a common man, employed in a common function and preparing for his wedding ceremony, which will have a common script. He caught a cold, as all of us have one day and will catch another day. But this time there is something different. After healing, there was persistent pain behind his right nostril. The pain got worse and spread to the right side of the face and forehead.

The young man became a fixture in clinics and emergency rooms. Wrapped in promises of healing, he received injections or prescriptions for some drug, but frustration always came. Twice he was treated for sinusitis, although no tests suggested this complication.

There went months of pain. There is no patience to resist. He agreed to be admitted to a hospital, for new treatments, delivered in new dosages, and to quickly carry out the tests deemed necessary. The test results were interpreted as normal and it was not discovered what was wrong in Ulysses’ head. Even so, the pain was reduced by the effect of the oxycodone medicine, which he started to use daily. Oxycodone was the siren song.

This drug belongs to the pharmacological class of opioids, like morphine. A category of painkillers that has caused an incredible number of overdose deaths in the United States; an estimated 165 thousand in this century. In the late 1980s and early 1990s, it was argued, “largely on moral grounds”, that opioids should be prescribed for chronic pain. The use model was inspired by the success of opioids in the treatment of acute pain and pain at the end of life.

The American Pain Society in 1996 issued a very influential, landmark statement which stated that opioids were safe and effective for the treatment of chronic pain and that the risk of dependence was negligible. However, this society received salaries close to US$ 1 million from pharmaceutical companies in corruption for their purposes. Accused of colluding with the worst drug epidemic in the US, the American Pain Society closed its doors in 2019.

But Ulisses felt nauseous and dizzy with the medicine, in fact he no longer even noticed the potent analgesic effect as it had been in the first days of treatment and gave up the pill. Sick and furious, he was admitted a second time to another hospital. It didn’t take long for a doctor on the team who attended to him to think that the pain was psychological, therefore, a psychological evaluation would be useful.

Enter the psychiatric Alice. Called to the case, she evaluated Ulysses and made her judgments. Leaving his room, he found the neurologist in charge of the patient: “I’m in a hurry, I’m going to the restaurant to have tea and some cookies and I’ll be off to the office, there’s already a patient waiting for me. Come with me so I can tell you about Ulisses” . And she quickly disappeared.

The neurologist followed behind, taking long strides, the only reason he didn’t lose sight of her was because he could see the rabbit, stamped on her colleague’s bag, until Alice disappeared down the stairs. The neurologist found her at the restaurant. She recalled that Ulisses had plans, wishes, and talked about his past with pleasure. Something that is lost in depressed people. Hearing that, the neurologist felt small, ignorant with every sip of tea and every word Alice said. The psychiatrist said goodbye: find a cause for the pain and treat it accordingly.

The next day, the doctor opened an editorial from a neurological journal in his e-mail; by a rare coincidence, one of the topics had the description of a clinical case that reminded him of Ulisses’ situation. Finally the diagnosis. Ulisses had a common alteration in his nasal septum, a bone callus. This minor and frequent abnormality almost never causes any symptoms. Possibly the cold altered the local sensitivity and caused the pain. Why that particular cold caused the pain is an unanswered question.

An ENT doctor operated on him and corrected the problem. Ulysses was cured of a rare pain caused by ordinary things.

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