Fibromyalgia is often called an invisible disease because it presents no outward or visible signs of illness, yet it greatly affects the ability of its patients to function normally. Characterised by pain and tiredness throughout the musculoskeletal system, fibromyalgia is the second most common condition that affects bones and muscles, after osteoarthritis. It is very difficult to diagnose – or understand. In fact, it is very regularly misdiagnosed because its symptoms – widespread muscle and joint pain, headache, dry mouth, eyes and nose, lack of concentration, incontinence, hypersensitivity to temperature change, numbness in the extremities and stiffness, as well as fatigue – can also present for any other range of illnesses which are more common and generally have to be ruled out first.
In Jamaica, not very many people are aware of what fibromyalgia is. Even fewer understand the ordeal that fibromyalgia patients undergo. The illness is diagnosed mainly in women, but it is said that men living with fibromyalgia undergo even more severe symptoms than their female counterparts. Below is the story of a Jamaican male who was diagnosed with fibromyalgia in February 2017, giving us a little insight into what life can be like for a man in Jamaica living with the disease.
I discovered that I had fibromyalgia on February 24, 2017. This was when I was hospitalised after an accident at work. I was at work at my desk when I felt a sharp pain from my left foot to my head. I couldn’t explain it. I ended up in Kingston Public Hospital. At the hospital, I discovered that I had other complications, like high blood pressure, which didn’t help the situation at all. They did various tests and couldn’t find anything wrong with me. There is not a test that can determine if you have it [fibromyalgia] … they have to watch the tender points on the body.
After the diagnosis …
I didn’t know what it was at first. And I was very surprised when I did the research and realised that it’s very rare in males, especially at my age – 24. Anyway, I said ‘God, only you know everything and you will take care of me.’ Since then, my body has been in a different state. I am on go-slow. I get very weak, and I’m in constant pain. And there’s the nausea and the vomiting. This thing affects different organs and I have to see different specialists to treat the different symptoms. You have specialist for psychiatry, orthopaedics, pain clinic management, medicinal, dietitian, physiotherapy and internal medicine doctors.
I thank God that my doctors are very helpful, and they made recommendations for me … and I got financial assistance from my friends and family members. I don’t work now because of the illness. When I overwork, I have a relapse, so I can’t take on the heavy work or the regular hours. So I’m home. When I’m home, I do my daily meditation, I read my scriptures, I pray and fast. What I’m going through reminds me of Job. From time to time, I share my testimony with others. I have my down moments and my up moments. That’s another thing is that it affects your mood and you end up with mood swings. One doctor told me that having this is like a woman having menopause and menstruation in one – a lot of pain and changes in the body creating a lot of constant discomfort.
Finding ways to cope …
The only way I cope is by saying that this is just the testing of my faith. I have to get daily encouragement. Sometimes you will cry because it slows you down in so many ways. I can’t do anything tedious, and I’m still not used to being in that position.
You wouldn’t understand until you get it, because it doesn’t show on the outside, but on the inside, you suffer silently. It is not popular or known, and people don’t get it. I have a passion for medicine and wanted to further my studies. I actually completed the medical assistant programme. But since this illness, the medication is so expensive, some are not covered by DrugServ, and I just have to focus on managing this.
And then there are other things. I lost my home to a fire in February of this year(2018), so I’m dealing with that. I want to start a fibromyalgia association in Jamaica. We need a place where we can talk and share about better treatment options and ways to cope and deal with it. This thing affect my short-term memory. I t affect my speech. It give you fatigue, and it leave you in depression state. Just January 11 gone, I was vomiting blood, and they were treating that. And then I find out this thing affect your urine patterns too.
Message to others …
But if there is anything I would say to people is that I can’t give up. Fibromyalgia may be painful – that’s the negative side. And there is no known cure. But there is treatment and research is still going on. I would tell people to never take life for granted, regardless of your age or gender. Anything can happen in a split second. What you have to do is always acknowledge that there is a God who can bring you through all things. Through your illness, you can be a great motivation to others.