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MEDICINE: IN THE THROES OF RELENTLESS PAIN

Those suffering from chronic pain sometimes escape all diagnosis and are often told it is all in their head.
Updated 13 Sep, 2020 02:56pm

Those suffering from chronic pain sometimes escape all diagnosis and are often told it is all in their head. In the case of the mysterious fibromyalgia, it is actually an issue of how the central nervous system processes pain



“There are so many ways of being despicable it quite makes one’s head spin. But the way to be really despicable is to be contemptuous of other people’s pain.” — James Baldwin, Giovanni’s Room

1

Asra was sixteen when she was assaulted on her way home from Moon Market. This happened in a public park. The man was a stranger she had glimpsed a few times in her prototypical middle class Lahori muhallah, but never paid much attention to.

He overwhelmed her and dragged her behind a hedge.

Asra distinctly remembers his breath: “His mouth smelled like onions, and something dead. I don’t think I could ever forget that smell.”

The ordeal lasted for seven minutes—Asra knows because during and after she kept looking at her watch, thinking, A few more minutes. Just a few more minutes. Then: Seven minutes. He destroyed my life in seven minutes.

When Asra staggered home, lips bloodied, clothes torn, her family wept loudly and rushed her to the hospital. The medical examiner brought up the possibility of filing an FIR. Like many Pakistani families, Asra’s parents balked.

“They didn’t want to deal with the police, the gossip, the rumors. Who will respect her if everyone knows? Who will marry our daughter, they said.” Asra fidgets when she tells me that. “I was bleeding, I was shocked, and my parents were talking about my marriage. To a man.”

Her mother told her this was a woman’s burden: This is why we’re so careful, baita. We have to be careful, watchful every single day of our life.

“As if getting raped were my fault because I let my guard down,” Asra says. “They made me feel like I asked for it.”

Asra would forget neither that day nor her parents’ reluctance to bring the rapist to justice. She has been married and divorced since—“No children, thank God,” she tells me—but to this day she hasn’t forgiven her parents.

2

Asra was nineteen when she first noticed the pain. It began in her right shoulder and went in clenching waves down to the base of her neck and up to her ear. It felt like an iron clamp. Massage, painkillers, and muscle relaxants eased it temporarily, but the pain came roaring back if she stopped the medicine. A few weeks later, the pain spread to both sides of her body and down both arms—a widespread burning and stiffness that would never go away.

Because she was always in pain, Asra began to experience mood changes worse than after her assault. She also developed sleep disturbance, intractable fatigue, difficulty concentrating at work, and a hypersensitivity in her flesh so acute that mere touch would set off her pain. A physical exam by a doctor would leave her crying and exhausted for the rest of the day. Her parents were reasonably well off. No expenses were spared in getting myriads of blood tests, CT scans, and MRIs, but the mysterious illness continued to defy the medical professionals’ best efforts.

“It’s in your head,” one officious, bearded doctor with a busy practice told Asra over five minutes of their time together. The doctor tut-tutted and examined his fingernails before resuming: “Anxiety, depression, stress. All ills of an immoral society. Pray for forgiveness, my child. Your pain will be taken away.”

Asra found the doctor’s condescension intolerable. She wouldn’t reach out again to a medical professional for years, during which chronic pain prevented her from participating in sports and activities she’d previously loved. Sleep deprivation or simple chores would trigger the pain and the associated anxiety and fatigue. This affected her relationship with friends and, later, her husband. It prevented her from pursuing a degree abroad.

“I lost self-respect, confidence, and belief in myself. I already felt contaminated by what had happened to me, but now I felt useless - a broken shell.”

As she leaves my clinic, Asra turns and says, “You know, doctor sahib, I firmly believe my disease was brought on because of my sexual abuse.” Her therapist has told Asra that she suffered tremendous psychic wounds. Asra believes her psychic wounding caused physical wounding inside her head. She asks me if she is right.

3

Fibromyalgia Syndrome (or the more recent terms chronic pain amplification syndrome or central pain syndrome) is a disease characterised by widespread pain—sometimes with specific tender points on muscles and bones—chronic fatigue, ‘brain fog’ with difficulty in memory or concentration, non-restorative sleep, irritable bowel, and often a mood disorder. The female to male ratio is about 2 to 1 globally. While data is scant in Pakistan, a 2014 study of 120 rheumatoid arthritis patients at Indus Hospital, Karachi, found that all patients who had fibromyalgia in this group were female.

Unlike other rheumatologic diseases, fibromyalgia does not exhibit significant inflammation in the blood or soft tissue. Rather, it is a problem of central nervous system’s pain processing: the patient’s brain perceives more pain than would be expected from a physical stimulus. Most of us don’t mind an occasional reassuring shoulder squeeze; this, for a fibromyalgia patient, may result in pain that could last for hours. Understanding this idea of centralised pain is critical because often these patients see surgeons for chronic neck and low back pain and are offered operative procedures, which may actually worsen their pain as the source of the pain was never in the neck or lumbar spine.

Most physicians know that patients with spinal or limb trauma or arthritis (such as in the knee or hip) can, if untreated, develop secondary chronic pain, which is independent of their initial arthritis pain: The brain has been bombarded by pain signals for so long it lowers its pain perceiving threshold so it feels pain all over with the slightest stimulus.

What else might predispose one to developing such a debilitating chronic pain condition?

“I think this is well established,” says Dr. Fawad Aslam, a clinical rheumatologist and researcher at the Mayo Clinic in Phoenix, Arizona. Dr. Aslam, like many doctors, has been treating patients with fibromyalgia from the beginning of his clinical practice. “Emotional trauma, history of abuse, post-traumatic stress disorder or PTSD (from any significant stressor), death of a loved one are well reported triggers, as are car accidents, viral illnesses, and spinal issues.”

Dr. Aslam’s point about abuse leading to chronic pain is well taken: In 2017 the journal Military Medicine published an intriguing study in which American researchers examined fibromyalgia in 76 female war veterans. They discovered that over half of the participants (56.6%) had a positive fibromyalgia screening score, although only 14.4% were deployed to war in the Middle East. What was startling, however, was that more than 70% of participants reported harassment and 32% reported sexual assault while in the military.

Apparently harassment and sexual assault may be as predictive of a person developing chronic pain syndrome (if not more predictive) than seeing war. It has been estimated (in various studies) that 10-64% of fibromyalgia patients have history of childhood sexual abuse.

We have established that physical or emotional trauma can significantly increase risk of fibromyalgia. So can we conclude that in fibromyalgia psychic wounding leads to physical wounding inside the brain, as Asra believes?

Well, yes.

A 2018 prospective randomised control trial (a type of study considered gold standard for effective research) evaluated the effect of hyperbaric oxygen treatment (HBOT) on forty patients with fibromyalgia.

HBOT therapy (breathing 100% oxygen under increased atmospheric pressure) has been shown in several clinical trials to have the capacity to induce neuroplasticity, which leads to repair of impaired brain function even years after an injury.

The study authors showed that more than 50% of fibromyalgia patients who received HBOT noted such improvement in pain, depression, and other measures that they didn’t fulfill the criteria for fibromyalgia diagnosis anymore. This could actually be seen on specialized brain imaging such a MRI and SPECT: there was increased neurogenesis and brain functionality -- promising evidence that fibromyalgia is a disease of non-healing brain wounds.

4

That segues into our next question: Is there a clinically observable overlap between emotional health or psychiatric illness and amplification of chronic pain?

“Yes, quite frequently,” says Dr. Ali Madeeh Hashmi, a psychiatrist and Associate Professor at King Edward Medical University, Lahore. “For two reasons.

“First, emotional distress often gets perceived and expressed as physical symptoms, including chronic pain, especially in our culture wherein expressing physical pain and symptoms is culturally acceptable and encouraged; expressing emotional symptoms is not.

“Second, depression, anxiety and emotional distress

(a) change a person’s ‘processing’ of pain which means they feel it more, they are more distressed by it, they cannot direct their attention away from it;

(b) limit a person’s physical mobility, often reduce social interactions and other stress relieving activities, which magnifies their pain by trapping them in this vicious cycle of isolation and debilitating pain.”

Fair enough. Now we have a person who has chronic pain triggered by a combination of physical and psychosexual trauma whose encounters with healthcare providers have not gone smoothly.

What could doctors do to help such a seemingly complicated patient?

“The first thing the doctor needs to do is to establish what diagnosis the patient really believes in,” says Dr. Fawad Aslam. “Many patients come with an alternate diagnosis, and some with the belief, put in by other physicians, that it is all in their head. Many are relieved to know they have fibromyalgia. But some do not want to be diagnosed with it. They would rather have lupus (a more serious illness) than fibromyalgia because lupus is something more objective while fibromyalgia seems abstract. So, after appropriate workup to rule out other possible causes, a discussion needs to be held.”

Dr Aslam is essentially referring to the stigma and fear of having a disease solely diagnosed through subjective parameters. After all, no commercially available blood tests or imaging can prove one has fibromyalgia, even though the American College of Rheumatology has clear criteria for diagnosing it.

The quintessential substrate for stigma is hypocrisy. Stigma leads to theft of a person’s right to self-truth perpetrated by a stagnant society. Stigma and fear, therefore, are enemies of treatment in fibromyalgia and must be tackled accordingly.

“Two things the patient should always be counseled on: fibromyalgia is one of those diseases where the patient has a bigger role to play than pharmacologic therapy; and that there may always be some pain. We may not get rid of it ever, but we will make it less,” says Dr. Aslam.

This is important for patients (especially those who have fibromyalgia overlapping with mental health concerns) to understand. Like diabetes or heart disease, while fibromyalgia may not be one hundred percent curable, it is almost always treatable (often with good results) with a multimodality approach.

5

What might a good multimodality approach for treating fibromyalgia look like? The single best answer to this I can give is a patient’s success story in their fight against fibromyalgia. This particular patient is a physician as well, so their understanding of fibromyalgia is multi-faceted:

“I have had chronic low back pain since I was a teenager (tall, somewhat overweight). In 1999 (or thereabouts) while working in my first job as a healthcare provider in the USA, I developed this back pain without any preceding injury. Unlike my earlier bouts of pain, which would go away in a few days, this stretched into weeks, then months with no relief in sight. Gradually I got more and more depressed and stressed especially because my wife of two years and I were in the process of planning to have our first baby (I surmised later that perhaps the stress had something to do with the pain worsening). I did the usual rounds of MRI (bulging disk et cetera was reported), neurosurgery consultations (conservative treatment advised), physiotherapy, another neurosurgery consultation (ditto), more physiotherapy, chiropractic consultation; and still day in and day out I had chronic low back pain dancing up and down my back, sometimes curling around my stomach or knee but never ever going away for good.

“Eventually, I discovered Dr. John Sarno, started reading his books, got his journal, tapes et cetera. Learned to swim, lost weight, started yoga; and very slowly it started to get better. I discovered during my reading then how there was no link between back pain and structural findings on MRI, and how strong a link there was between the body and the mind.

“But I think what actually helped me turn the corner was the realization that this was not going away, that I had to continue my life in spite of it.

“It was very painful to realise the limits of my body, to accept that perhaps I was beginning to gradually decline physically (I was in my early thirties at the time) and if I did not take better care of my body, I would be in trouble in a few years. There was also a lot of fear associated with the pain: of being paralyzed, not being able to work, not being able to play with my children, being an invalid etc.

“Still took over two years to go back to the way it used to be. I still have it but as long as I stay active, get enough sleep, keep moving etc, it’s under control.

“Today, more than twenty years later, I am probably in better shape than I was then. I cycle, swim, do yoga and weights, and pretty much whatever I want. My body has slowed down and hurts more if I abuse it but I can recover quickly and keep going. I have also become a lot more particular about what I eat, how often I exercise et cetera.

“And I have every intention, if I am able, to take good enough care of my body to stay the same way until I am 80 or 90 or more.”

As doctors we understand that not every patient has means and access to resources that allows them to take care of their body consistently, as this particular patient did, but we do believe the insights offered by this patient’s journey are invaluable and applicable to nearly every patient who suffers from fibromyalgia.

6

Chronic pain is a demoralising, difficult state of being.

Asra should know: in the early years of her condition, after countless futile visits with GPs, hakims, orthopedic surgeons, neurologists, physiotherapists, and pehlawans, she was in utter despair. She contemplated suicide a few times, but didn’t follow through. Even that made her feel like a failure.

Eventually a friend suggested a good therapist trained in CBT (Cognitive Behavioral Therapy), which led to suspicion for a particular diagnosis. Asra was referred to rheumatology and she was diagnosed with fibromyalgia.

A multimodality treatment plan for fibromyalgia was initiated. Asra was given a non-opioid pain medication; healthy non-processed, mostly plant-based diet; recommendation for gentle yoga and swimming; a structured regimen for psychotherapy that included CBT and guided exercises in mindfulness; instruction in sleep hygiene; and detailed counseling about her disease.

Asra tells me, “At the end of the day the two things that helped me the most were: A: Knowledge that it was not just in my head. B: That I could do something about it.”

Asra is referring to two distinct phenomena here: validation and agency. Someone listened to her, believed her, and told her she wasn’t crazy: that her disease was, in fact, real (validation). Second, evidence-based treatment is available that can help her, ergo allowing her control and power over her condition (agency).

Today, Asra is a functional twenty-nine-year old health professional finishing a degree in physiotherapy. She runs regularly, and, before COVID-19, was routinely swimming or doing yoga at least two to three times a week. She is in a relationship and for the first time since that awful summer she feels hopeful about life.

“I was wounded as a child, she says, “so I am always in a little bit of pain. But I’ve acquired coping skills and I have decided that my attacker will never again have power over me or my body.”

Asra quotes James Frey at me: “Pain is the feeling. Suffering is the effect the pain inflicts. If one can endure pain, one can live without suffering. If one can withstand pain, one can withstand anything. If one can learn to control pain, one can learn to control oneself. ”

I, in turn, share one of my favorite quotes with her, and we part company, smiling:

“If you are silent about your pain, they’ll kill you and say you enjoyed it.” — Zora Neale Hurston


The writer is an American Board-certified rheumatologist and author. He works at Shalamar Hospital and Shalamar Medical & Dental College. He tweets @usmantm. Email admin@usmanmalik.org