My pain is real; it's not just in my head

For 14 long years, doctors could not explain what was causing the incessant, sting in Gladys Njoki’s body.

Suffering, wincing and sensing imminent death, Ms Njoki moved from one expert to another, getting heaps and heaps of reports and dozens of painkiller prescriptions in the process. But nothing offered a lasting solution.

Then doctors started telling her that her pain was not real. That it was only in her mind. Ms Njoki, 43, first experienced the sharp pain in February 2000 while giving birth to her first child. Four years later, she was diagnosed with fibromyalgia, a chronic ailment that affects three to six per cent of the world’s population.

Often called the invisible disease, fibromyalgia is a chronic condition characterised by widespread intense pain from no clear source. It was initially thought to be a musculoskeletal disorder, but it is now considered a disorder of the central nervous system (the brain and the spinal cord).

Scientists say that the level and activity of the brain chemicals responsible for processing pain signals is affected, causing the sensation of pain to be amplified. Patients have increased sensitivity to touch, temperature and pressure.

It is usually accompanied by fatigue and sleep, mood and memory problems, and interferes with a person’s day to day social and work life. Symptoms include general stiffness, sleep disturbance, fatigue, depression, difficulties concentrating and stomach upsets.

The problem is worsened by dampness and difficult weather conditions. The condition can be linked to genetics (family history of the disease) or environmental triggers such as after car accidents or biological stress.

DIFFICULT TO DETECT

In Kenya, where doctors are hardly aware of it, it costs a fortune in time and financial resources spent, trying to get a diagnosis.

Diagnosis is often difficult because fibromyalgia doesn’t affect the major organs, can’t be detected through tests like x-rays and its symptoms overlap with those of other chronic illnesses. Moreover, clinicians who are not familiar with the condition’s classic symptoms might have difficulties diagnosing it because it doesn’t have a single cause or outward signs. Often, patients are diagnosed with arthritis .

That was the case for Humphrey Kagwe, a businessman in Ongata Rongai, Kajiado County, who spent 12 years in and out of hospitals before finally getting a diagnosis in 2015.

“It started back in Standard Seven in 2003. I had severe back pain and couldn’t stand for long. Sitting without back support also became impossible,” narrates the 29-year-old.

He sought answers in various hospitals and got a lot of x-rays, but they offered no conclusive answers.

“They said it was definitely an issue with my spine and suggested thermal therapy (use of heat), which only offered fleeting relief,” he says, adding that he also had fatigue and migraines.

After years of trying to seek answers without success, he decided to live with the searing pain. He went on with life, graduating from Multimedia University in 2012, started volunteering at a local radio station and pursued a DJ course in 2014. But being a DJ was more than his body could handle.

“It required me to stand for long periods of time, but the pain in my back wouldn’t allow it. I quit after a few months,” he recalls.

He went home to Kirinyaga, where the pains worsened, forcing him to seek medical attention once more. He was diagnosed with spondylitis, an inflammatory arthritis that affects the spine and large joints.

“The doctor said that I might have injured my spine when I was younger and prescribed three-month medication and therapy. But the pain only became worse, spreading to my legs, feet and chest,” says Mr Kagwe, who sought a second opinion at a private health facility in Kerugoya, Kirinyaga County.

A specialist, who recognised his symptoms, suspected fibromyalgia, and recommended a magnetic resonance imaging (MRI) scan to confirm it. However, Mr Kagwe did not have money for the scan at the time, and only had it done in Nairobi two months later. This time he got a definite diagnosis. He had fibromyalgia.

But the medication prescribed did not work as the doctor had hoped, and Mr Kagwe had to stop taking it after a year.

NUMEROUS HOSPITAL VISITS

“All I have been doing since then is looking up pain remedies on the internet, and persevering the pain. Some days it is manageable, but on others I am in so much pain. But there is nothing I can do for now. Fibromyalgia still does not have a permanent cure,” says a resigned Mr Kagwe.

In the case of Ms Njoki, the pain that began as she delivered her firstborn through Caesarean section could hound her for eternity.

“I first felt the pain around my womb and it would later spread to other parts of the body. I could not even hold my baby when I was taken to the ward. All the doctors told me was that they had given me painkillers and that the pain would subside,” says Ms Njoki, who lives in Nairobi’s Donholm.

She was discharged four days after delivery, and continued to suffer pain at home, such that she could not take care of the newborn. Her husband took over.

It was only when one doctor prescribed painkillers for nerve pain after eight months of unrelenting agony, that the pain subsided.

“ For the first time in a long while, I slept peacefully. Prior to that, I had already given up and I knew I would die. Now, I thought that I was finally healed. I was now able to hold my baby, take care of her and do some house chores. But as soon as the prescription ended three months later, my nightmare returned, with double the intensity,” she narrates.

From then on, it was visit upon visit to health facilities.

“It got to a point where doctors and nurses gave me side glances. I was always that woman in pain asking for medication,” she says.

After numerous visits, one doctor referred her to a specialist based in Nairobi’s Upper Hill, who after examining the over 100 reports she had from previous tests, had an idea of what was ailing her. But she needed some more tests done to confirm. A blood sample sent out of the country for tests, and as they waited for results, she was put on painkillers. Results confirmed that she had fibromyalgia.

“Fourteen years later, I could finally tell others that the pain was not in my head,” she says. “I started treatment almost immediately and all was well. The pain was now bearable.”

But in April 2017, tragedy struck. Her body had a flare-up and she could not move any part one morning after waking up.

“I was rushed to hospital and my doctor advised us to try out Ketamine Infusion, an experimental pain treatment. I readily agreed and slowly by slowly, my muscles started relaxing and the pain reduced. My mind became clearer too,” she says.

Ever since, she has regained control of her life, and nowadays she can take a shower, stand and walk on her own.

“I have been on the same treatment since then. Although I still experience pain, lose my sense of direction and my memory sometimes, and get exhausted after doing minimal activity, I am grateful to be where I am,” says Ms Njoki.

Although diagnosis finally provides relief, by finally putting a name to the disease, that is only the beginning of the journey to find the therapy that works for a patient.

The pain can be managed with medication (painkillers and muscle relaxants), though opioids – some of the most powerful painkillers are not effective against pain from fibromyalgia because they do not reduce the activity of neurotransmitters in the brain.

Treatment involves pain management (dry heat can help); promoting physical function through physical therapy (low impact aerobics, yoga, resistance training, swimming, and deep water running) and improving quality of life (dealing with sleep disturbances and coping with stress).

For this reason, fibromyalgia is best managed by a team of health workers (physicians, physiotherapists, psychologists and nurses) and physical activity and sports experts.

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Facts about fibromyalgia

The diagnosis is usually made between the ages of 20 to 50. The fibromyalgia diagnostic criteria, established by the American College of Rheumatology (ACR) in 1990, includes a history of widespread pain in all four quadrants of the body for a minimum duration of three months, and pain in at least 11 of the 18 designated tender points when a specified amount of pressure is applied

A new criteria was developed by the ACR in 2010, which does not use tender points but focuses on pain being widespread and accompanied by allied symptoms such as sleep problems, problems with thinking clearly, and fatigue.

Although chronic, widespread body pain is the primary symptom of fibromyalgia. A variety of other symptoms are common in fibromyalgia patients. They include moderate to severe fatigue, sleep disorders, problems with cognitive functioning, irritable bowel syndrome, headaches, anxiety and environmental sensitivities.

Source: National Fibromyalgia Association (US)