My battle with a mysterious pain that won’t go away

“For as long as I have lived, I have lived a life of mystery, a life of pain, a life of anticipating my next big diagnosis. The day I will find out whatever has been causing my pain for the over two decades of my life, I will address the Nation. For now, I can only use my story to encourage someone like me. I hope that they find courage to keep holding on and fighting on.

It all started in 1999 when I got my first job as a paediatric nurse. I was only 25 and ready to unleash my raison d'être by giving sick children the best care. I got a job at one of Kenya’s big private hospitals.

As I was still learning the ropes of being a full time career nurse, I started having a strange feeling on my right hand. It felt so heavy that when I tried to pull a blanket to cover myself, I knew something was not right. I avoided seeking medical help at first because I did not know what to tell the doctor when they asked me to describe how I felt. When it became worse, I went to the hospital and told my doctor that my hand felt as though it was straining, and tired. I also realised that anytime I sat by the window in a matatu and soft wind ran through me, my neck and hand would feel lots of pain. And my first little therapy was to always cover my neck when in a matatu. I didn’t have a medical cover then and had to be keen on how I spent money for hospital visits.

After analysing my symptoms based on my Mickey Mouse description on how I felt, the doctor diagnosed me with the thoracic outlet syndrome. This is a group of different neurological disorders, some of which are rare conditions. I was given painkillers and advised to go for physiotherapy.

I religiously did as I was told. But the pain did not go away. I then decided to scour the internet in bid to find out what really this thoracic outlet syndrome was. Out of all the symptoms I stumbled upon online, only one of those that I had was part of those that identify someone with thoracic outlet syndrome, and so I discharged myself. It was a wrong move as the pain intensified by the day.

I had heard about Afya Centre, the most conspicuous building in Nairobi for people who were not born in the city. I also learnt that there were scores of specialists inside there. While I did not have any referral to a specific doctor, I went there hoping to get someone who could potentially help me. I walked from one door to another, reading the door signs until I finally stumbled upon one that had been written –consultant surgeon. I knocked and  found a doctor who advised me to take a neck x-ray.

Another bombshell came out of that visit: osteophytes detected. Since I could read an X-Ray and even understand the doctor’s comments, his remarks insinuated that I had early degenerative arthritis and that based on the X-ray, there were visible osteophytes. They are like abnormal bone growths.

The surgeon asked me why I was experiencing such pains at my age since the condition is common for people aged 40 and above. Again, I was given painkillers and anti-inflammatories and asked to go for physiotherapy.

Based on my past experience of a diagnosis that I thought was wrong, I carried my film, minus the report and took it to another doctor. I wanted her to read so she could see what the other doctor saw. She confirmed that I had osteophytes. The pain now came at intervals. Sometimes I lived a pain-free life but most of the time I was in excruciating pain.

There was a time my right hand became dysfunctional. It was in the simple things like finding it hard to carry stuff and feeling tired so much that it even affected my writing and handwriting. But this time I had a medical cover and so I could get treatment without worrying about a possible dent of my pockets.

I went to see a neurologist who advised that I should have a Magnetic Resonance Imaging (MRI) scan. It showed the same things as the X-Ray and the treatment cycle continued. No new diagnosis was given at this point.

Again, I changed my doctor in a bid to find answers to my pain. I explained to this new doctor how my life had been since 1999. I had another MRI and the results indicated that I had a disk compression at two levels inside my neck.

Since the hospital I went to had a medical training school, I was used as a prop for the students. I remember the doctor telling the students, while touching my neck, that my muscles were wasting. I couldn’t understand that at the moment but it sunk in later that the pain had eaten into my muscles. After the class, I was told I had to be admitted immediately. I pushed back because I wasn’t ready. The doctor did not insist but he put a finality on my urgent need for admission.

I had left my first born daughter at home alone so I went and told my neighbour to check on her since I was going to spend my night in hospital.

During admission, I was given another diagnosis –cervical radiculopathy, which had the most painful treatment experience since I had to undergo acupuncture —  an alternative form of medicine where several needles are pricked on one’s skin. I was numb and I don’t think that helped me.

Over the years, I have come to learn  the pain medicines that work for me and those are the ones that I go for. I had to learn what works for me because I couldn’t keep going to the hospital.

I started downplaying myself and elevating the thought that people could start questioning why I was always going to hospital. I wondered whether someone could have bewitched me since no one in our family had ever experienced such pain before. I even danced with the idea of killing myself but I didn’t entertain it.

I decided to learn to live with the pain. I learnt a few coping mechanisms like always having something to cover my neck when it is cold. I was a liability night nurse because the cold paralysed my work since the pain was unbearable. My colleague, Felix, whom I am forever indebted to, took up most of my roles. It took a doctor’s letter after experimenting for three months without working on night shift for me to completely become a day-time nurse. The cold weather aggravates my symptoms, to this day.

I got a new job in Rwanda but life there was not rosy. My pain escalated to the head and it was so painful that I could not bend to pick something when I dropped it. My head felt heavy. In Kigali, I had two CT-Scans that did not have peculiar results. I came back to Kenya after three years and had another CT-Scan in my head, where it was discovered that I had incidental sinus. The ENT doctor told me not to worry that it was normal.

I kept going for checkup and on different occasions, I was told that I had all the types of headaches you can imagine. The doctors started acting as though I had become ‘too much’. I started feeling as if I was being labelled and that no one understood my pain. With the persistent headaches, I was advised to try going to India for treatment. One time my headaches intensified when I was in the changing room. I cried not because of the pain but because of the thought that my arteries could probably burst.

Sedate me

I had to request one of my doctors to authorise an MRI for me and I booked it for the next day. The MRI experience is one that I don’t think I ever want to have again, unless they sedate me. I have had 10 of them, or more, in my lifetime. It is the trauma of being in there that puts me off. It’s like a tunnel that you are placed in and you are not supposed to move, not even to sneeze or swallow saliva because anytime that happens, you have to start again. This time I was given the Gadolinium contrast media, a chemical substance used to improve the quality of MRI images. I kept wondering why I was given that. Could he have seen something strange?

The attendant was reluctant to tell me what he had seen. I had to wait for the doctor’s review, which I got the following day. I was with my daughter when my results were handed to me by the same MRI technologist. I peeped in to check what the report said and went straight to the conclusion. The first word I saw was; mass and then, query meningioma –which means there was a possibility that I had a brain tumour. I froze. My daughter read my facial expressions and fear gripped her as well.

The doctor, as always, told me not to worry. She confirmed that I had a brain tumour. Again, I went to see another neurosurgeon for a second opinion. He was keen to listen to my history and asked me to take other tests. He concluded that my headaches were as a result of a brain tumour. He asked me to go for a review in three months and get the tumour removed in six months.

I got another job in Saudi Arabia and the surgery had to be brought forward. After the surgery, I knew that it was the end of my painful experiences. Those who knew that I had undergone surgery also hoped I would stop complaining. I did not. Some thought I was just seeking attention and I resorted to pretending that I was not in pain anymore. But for how long? When I am in pain, I kind of get depressed, so people could still tell when the pain knocked.

One of my friends recommended that I see another neurosurgeon. To my surprise, he was one of the doctors I had seen some time back and did not go for a second review. He was kind, regardless. 

He checked the top of my right eye and told me I had a metal plate, something I vehemently denied. I later confirmed that the metal plate was left inside my body after the brain tumour surgery but I had to live with it since it is not injurious to my body but it plays a part in the headaches .  I learnt that sometimes metal plates are left to help in joining the bones that were interfered with during surgery.

One of the chief radiologists told me the plate constricts and expands depending on the weather and could trigger headaches. Just knowing why I always had headaches was a bit consoling, but I didn’t want another surgery. I have realised that people don’t understand when someone says they are in pain, especially chronic pain. People will judge you and label you lazy or pretentious. I have been told that I use my pain as an excuse. The bottom line is that pain is only understood by the person who feels it. I don’t think anyone enjoys being in pain. I went for further check-up since my hand was still in pain. One orthopaedic surgeon diagnosed me with Supraspinatus tendinopathy. This is a disease that causes a lot of pain in the shoulder area and mostly affects athletes like volley and hand ballers. I was given the same painkillers and asked to go for physiotherapy.

I still get the pain and I am not sure which of my diagnoses is final. I have done countless research online. I have prayed and told God that I want to get healed. It reached a point I even said that maybe God doesn’t want to heal me so that my pain reminds me of Him. I wish to get healed so  I can practise my nursing abroad like most of my peers. My family has been supportive— even when my medical cover depletes because of the frequent hospital visits, they always come through for me. My children have matured enough now and they know what to do when I get the pain. They do not cry like they used to. I hope one day I will get to know what really is causing my pain but I am content now. I have learnt to live with the pain but I won’t mind getting closure for what really is the root cause for my pain. 

A lot of people are going through chronic pain and I understand how draining it can be, especially if you are still trying to find answers. It is a great contributor to depression. I know of people who have it rough as employees dealing with chronic pains and suffer silently. I am forever grateful that I have always had heaven sent bosses and people that God put in my path. My encouragement to anyone going through the untold body pains for whatever reason is that it is possible to enjoy the positives and dance through everything. The pain does not define you.”

[email protected]