When pain becomes a constant companion

For years on end, Sylvia Njau, a banker, would walk into a hospital in intense pain and the doctors would find nothing wrong with her. A chance diagnosis finally revealed that she had fibromyalgia and thus started the life-long management journey. By Agnes Aineah

I was involved in a minor accident in 2010 as I stepped out of a supermarket along Tom Mboya Street in Nairobi. A driver accidentally drove over my foot as he tried to park his car. An X-ray, however, indicated that I didn’t suffer any fractures. And as I left the hospital that day, my injured foot was bandaged and it never occurred to me that the accident had triggered a rare disease I had harboured since childhood.

One morning while i was still in school, I woke up and discovered that the right side of my body numb. In class, I couldn’t hold a pen with my right hand. I also had a runny nose and I could feel my right eye twitching. Additionally, I had a severe headache on the right side of my head. That day, my parents came for me and took me to a neurosurgeon at KNH. After some physical tests, the neurosurgeon concluded that I had peripheral neuropathy. This meant that my nerves were not coordinating messages between my brain and spinal cord and the rest of my body. I left the hospital with painkillers to relieve my pain.

I was in hospital every three weeks, each time walking away with painkillers that eventually stopped working. At this time, I was a KCSE candidate and I struggled a lot to keep up with my studies. I had also started nose bleeding heavily and the right side of my body was in pain. I remember doctors telling my parents I wasn’t sick and that I was only scared of the examinations.

Then they put me on antidepressants and very strong pain killers. But even after scoring an A- in my KCSE, the pain persisted.  All medical facilities I checked into kept prescribing medications without proper diagnosis. Afraid that I was overworking my kidneys because of the antidepressants and painkillers, I decided to quit the drugs and tried staying off caffeine. This helped immensely.

When I finally joined the University of Nairobi to pursue a degree in Economics and Statistics, I thought I had a great opportunity to access free medical services at the school pharmacy. But the physician at this facility gave up on me after physical and hormonal tests revealed that I was okay. Pharmacists resorted to giving me supplements and painkillers every time I checked myself into the facility as they didn’t know what to do with me anymore.

I have lost count of the number of hospitals I went to looking for answers to relieve the pain I was going through. I have been to nerve functionality tests and undergone physiotherapies that sometimes compounded my pain. I once quit some physiotherapy sessions when the pain started spreading to my left side. Then I also noticed that I felt extreme pain when I was exposed to bright lights, loud noise, severe cold and intense heat. I knew there was something terribly wrong with me even when others couldn’t see it. And I needed someone to explain the pain, the numbness and the fact that I had grown up thinking I was a lazy girl when I struggled to perform house chores and when I failed to enroll for any games in school because I was always fatigued.

Then I went to visit a distant cousin and I told her everything I had been through. To my astonishment, she said she had lived with similar symptoms for years only that she had been diagnosed with fibromyalgia by doctors from India. I researched on the condition associated with pain and found out that it had no cure. I was both happy and scared. At last, I had an idea of what I was suffering from. On the other hand, the fact that I was to live with the condition was unacceptable.

My blood samples were analysed outside the country in April and the tests confirmed my fears that I had undifferentiated connective tissue disease and fibromyalgia.

I was in denial until I came across L’esperance Fibromyalgia Organization, a support group for people who have been diagnosed with fibromyalgia. I have interacted with people that quit school when the disease rendered them bedridden and others who tried to commit suicide because of the pain. Others couldn’t handle full-time jobs. Then I counted myself lucky as my condition is manageable.

Mind tricks

My mind has this way of convincing me that I am in pain even when I am not. Sometimes, when I am being rained on, I believe the raindrops are needles pricking me and I actually feel pain. At times, it is  excruciating and I can feel it on any part of my body.

Nowadays, I try as much as possible to avoid taking drugs unless the pain is too much or when I need to sleep. I have my own remedies including chia seeds that I put in hot water to boost my energy. There are other people in the support group who massage themselves with simsim oil to relieve their pain.

My greatest fear is the fact that I will someday have to handle this disease while I am pregnant and the subsequent motherhood. I wonder how my fatigue will get given that I already experience a lot of that. But I am grateful that my boyfriend Duncan, who is also a doctor, understands the condition and has dedicated a great part of his time researching the disease and giving me the necessary support.