NAIROBI, Kenya, Jun 17- For 14 years, doctors could not explain what was causing the incessant, stinging pain in the body of Gladys Njoki.
Suffering, wincing, and sometimes imagining her death was near, Njoki moved from one expert to another, getting heaps and heaps of reports and dozens of painkiller prescriptions in the process. But nothing seemed to offer a lasting solution.
It reached a time when some medics told her the pain was unreal; that it was only in her mind.
Njoki, 43, first experienced the sharp pain in February 2000 as she delivered the first child. It was until June 2014 that an expert diagnosed her condition — fibromyalgia.
It is one of the most chronic ailments that humans can experience. It affects an estimated three to six per cent of the world population, according to the National Fibromyalgia Association of the United States.
The tragedy facing Kenyans with fibromyalgia is that medics are hardly aware of it, and that it costs a fortune to be diagnosed.
Njoki is not the only one who took long to discover what has been sending sparks of pain throughout her body.
Humphrey Kagwe, a businessman in Rongai, took 12 years in and out of hospitals before an expert could finally diagnose fibromyalgia in 2015.
“The first pain symptoms started when I was in Class Seven in 2003. I would experience severe back pains and I could barely stand for long. Sitting without back support also became difficult for me,” says the 29-year-old.
His visits to various hospitals seeking answers for his condition did not change much. He remembers taking numerous x-ray scans.
“All they could say was that it was definitely a spinal issue. They suggested thermal therapy, which is the use of heat in therapy. It only gave some relief only for a period of time. I started experiencing fatigue and migraines around the same time,” he recalls.
Most doctors he visited afterward did not give a diagnosis and only suggested thermal therapy.
At some point, he gave up the quest for professional medication and decided to live with the searing pain.
By 2012, he was done with his studies at Multimedia University.
“I started volunteering as an intern at a local radio station. As I deeply had a passion for radio, I decided to pursue a DJ course to incorporate the two. This was in 2014 after a year of volunteering. My studies
were, however, short-lived. Being a DJ requires one to stand almost all the time, something I couldn’t do because of my back pains. I quit after some months,” he says.
He would then return to Kirinyaga, his county of birth, as the pains grew worse.
“I went to the hospital and it was the same story all over again, only that this time they prescribed painkillers,” he says.
One expert diagnosed spondylitis, an inflammatory arthritis affecting the spine and large joints.
“He said that my spine was not normal and that I may have injured it when I was younger. He prescribed medication and therapy for the next three months after which the pain had actually become worse. I could now feel it on my feet, legs and chest,” recalls Kagwe.
After years of consulting doctors at public hospitals, whose prescriptions were futile, they decided to visit a private facility in Kerugoya for a second opinion.
“I underwent the same tests and they confirmed the same condition I had been diagnosed with,” he says.
One doctor referred him to a specialist who, upon interrogation, immediately suspected it was fibromyalgia. He wanted a magnetic resonance imaging (MRI) rest to ascertain it.
“We could not afford one, so I was given pain medication to take before we could raise the fee. Two months later, in May of 2015, we had raised enough money for the MRI in Parklands. I had to take the results back to the doctor in Kerugoya and he diagnosed me with fibromyalgia,” he narrates.
But the medication recommended did not work as the doctor had hoped. Kagwe had to stop it after a year.
“All I have been doing since then is looking up pain remedies on the internet, and persevering with the pain. I am okay on some days, and in so much pain on others, but there is nothing I can really do for now. Fibromyalgia still does not have a permanent cure,” says a resigned Kagwe.
In the case of Njoki, the pain that began as she delivered her firstborn through a Cesarean section could hound her for an 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 Njoki, who lives in Nairobi’s Donholm.
She was discharged four days after delivery but there was no improvement. Because of her condition, her husband took care of the baby on most occasions.
At one point, doctors sent him for nerve pain treatment. The painkillers she got from the nerve pain medics saw her pain subside for the first time in eight months.
“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 visits upon visits to health facilities.
“It got to a point where I started getting weird looks from the doctors and nurses because I was always in pain and asking for medication,” says Njoki. “I am also asthmatic, so in October 2013, it had taken me down and I had to be admitted.”
After numerous visits, one doctor referred him to a specialist based in Nairobi’s Upper Hill and, after examining the over 100 reports she had from previous tests, he had a clue as to what was ailing her.
“I first had to get my blood extracted. It was to be sent out of the country for examination. As we waited for the results, he put me on pain medication, and again for the first time in years, I slept well,” she says.
Results confirmed that she had fibromyalgia.
“Fourteen years later, I could finally tell others that the pain was not in my head,” she notes. “I started the 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 she woke up.
“I was rushed to hospital and my doctor advised us to try out Ketamine Infusion, a pain treatment he had just started trying out. 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 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 memory at times as well as get exhausted after doing a minimal activity, I am grateful to be where I am,” says a reassured Ms Njoki.
In conclusion, fibromyalgia is a condition that causes pain all over the body, sleep problems, fatigue, and often emotional and mental distress.
People with fibromyalgia, like Ms Njoki and Mr Kagwe, may be more sensitive to pain than people without fibromyalgia.
Some of its causes are stressors such as: being born premature, traumatic life events such as abuse and accidents, medical conditions such as viral infections or other illnesses, anxiety, depression, other mood disorders, PTSD, poor sleep, or lack of exercise.
According to the National Fibromyalgia Association, the diagnosis is usually made between the ages of 20 to 50. Research has also shown that women are more likely to develop fibromyalgia than are men.
Although chronic, widespread body pain is the primary symptom of fibromyalgia, other symptoms include moderate to severe fatigue, sleep disorders, problems with cognitive functioning, irritable bowel syndrome, headaches, anxiety, and environmental sensitivities.
The fibromyalgia diagnostic criteria, established by the American College of Rheumatology (ACR) in 1990, include 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 criterion 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.
Fibromyalgia can be managed or treated through antidepressants, cognitive behavioral therapy, improved sleep habits, prescription, and over-the-counter pain medicines, stress management techniques, as well as strength training and exercise.
It can be prevented by minimizing stress, eating a nutritious diet, getting enough sleep, maintaining a healthy weight, managing arthritis, depression, or other conditions, and staying active.
Karen Muriuki is a Health and Lifestyle journalist.
karenmbuyamuriuki@gmail.com
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