...It wants to defeat me, but I won’t let it!

Humprey Kagwe during the interview with Sunda at the Standard's offices at I&M Nairobi. [Elvis Ogina: Standard]

Humphrey Kagwi, 29, has Fibromyalgia, a rheumatic condition characterised by muscular pain. He tells Tracy Gesare every day is a choice between what he has to do and what he wants to do. 

Physical pain is not something you can‘t get used to even if you experience it for years. For the longest time, I have had to live with back pains and migraines. I was 14 when the back pains started and they seem to worsen as I grow older.

Around the same time, I started experiencing unusual bloating if I ate spicy foods or when I am hungry. My mother thought those were side effects brought about by a surgery for umbilical hernia I had in 2002.

We visited different hospitals but every test came out negative - we couldn‘t understand why I was always in pain. One of the doctors recommended thermotherapy treatment to help ease the back pain - this would work for an hour or two, then the pain would be back. Painkillers became my companion in this journey. 

My performance in school started to decline as the symptoms took a toll on me and my dream of joining a national secondary school started dying. Pain won over my dreams; I lost hope in life. My mother thought of raising funds to take me to India for treatment. Years passed on but we never managed to raise the money. We gave up on this course and started on another journey: the best way of coping with the pain.

I trained as a journalist at Multimedia University from 2010 to 2012 and even had the hopes of working in radio. While in college, I volunteered at the school radio station. After my training, I also volunteered at a radio station in Murang’a. While I was there, my passion shifted and I wanted to become a deejay.

In 2014, I went back to Nairobi and started my training as a deejay. It became very challenging for me because it required a lot of standing, memory and concentration which were eluding me. I was still feeling the pain and now my feet would ache because of standing and I’d also be fatigued for no reason at all.

I took a break from the training in June 2014 and went back home for two weeks. I did not make it back to Nairobi for attachment. While at home, my back pain heightened because of the cold weather. I was taken to hospital and diagnosed with spondylitis. For over six months, I would receive medication and therapy at the hospital but nothing changed. The pain never fully went away even after taking medication.

A doctor who works with my mother advised her to seek a second opinion after she heard about my condition. They reviewed my previous x-ray scans and ruled out spondylitis again. They carried out more tests and they couldn’t find any problem.

They referred me to a specialist, to whom as I explained my symptoms. He said it would have been a problem to do with my nerves and especially fibromyalgia. He advised that I do a Magnetic Resonance Imaging (MRI) and gave me some medication that I would be taking in the meantime. I had not managed to secure a job and my mother had run out money for all those tests and treatments.

After four months of working at my uncles’ boutique, I managed to raise funds to do the MRI which I took back to the doctor and he confirmed that it was fibromyalgia. Basically, I had been misdiagnosed and had been treating the wrong disease for over 12 years.

There are very few people, including medics, who are aware of fibromyalgia which makes it hard for the actual diagnosis to come by. There could be many others who have the same condition but they do not know due to misdiagnosis. I was relieved when they gave me the correct diagnosis because it then erased other guesses and imaginations. The doctor told me it is a lifetime condition and advised me on how to handle it.

As the disease advances, the pain does not reduce. For instance, I experience throbbing muscles, chest pains, mood swings, sensitivity to light and noise, anxiety and shortness of breath on top of what I used to experience before. Like migraines, back pains, joint pains, sleep disturbances, limb pains and dry eye which makes me have bloodshot eyes. 

As I have come to experience the disease and understand it better through my own research, I discovered the  condition has about 200 different symptoms that are unique to each patient.

During the hot season, I experience so much pain on my legs, my skin becomes itchy and I experience migraines. I cannot move around or travel during such times.

This condition has come between me and my dreams. 

I stopped taking medication because it became too expensive. I just use natural remedies which we try out and share in a support group I joined.

About Fibromyalgia

Fibromyalgia Syndrome (FMS) is a long-term medical condition characterised by widespread tenderness which causes pain all over the body causing mental distress. Other symptoms include increased sensitivity to pain, extreme fatigue, muscle stiffness among other unique symptoms like migraines, memory and concentration loss.

The specific cause of FMS is not yet known. However, it is thought to be genetic. It is also thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages around the body.

In most cases, the condition appears to be triggered by a physically or emotionally stressful event. They include an injury or infection, having an operation, the breakdown of a relationship or the death of a loved one.

This long-term condition that is difficult to diagnose does not have a cure yet. It can however be relieved naturally through stress management and lifestyle change. Mild exercises and relaxation techniques such as meditation and yoga also offer great help.

Medically, there are strong pain killers that can help ease the pain for the specific area such as back or limbs. Going for counselling and talking therapies also helps. The disease is more common among women than men.