Scotty Ireson, a resident of Victoria, BC, tells all in this interview about his struggles with fibromyalsia, a disease that does not get much media attention.

This is his story:

1. When did you find out you had fibromyalgia?

I think it was 2005. Before that I had the diagnosis of chronic fatigue syndrome.

2. How were you diagnosed?

Getting a diagnosis took a long time. Both fibromyalgia and chronic fatigue syndrome are diagnoses of elimination. The underlying cause is unknown and there isn’t a test for them so other possible causes need to be ruled out.

I started having major issues with my health when I was 14 and it took until my late teens to get the CFS diagnosis. That involved going to numerous doctors, including a variety of specialists. They all didn’t have any idea what was wrong and some even accused me of just trying to get out of school. I was an honor roll student and both my parents are teachers, not to mention I hold a master’s degree. I happen to like school. The whole process was drawn out, disappointing and sometimes quite hurtful. I was a scared kid who felt sick all the time.

It wasn’t until I made a friend whose mother had a diagnosis of chronic fatigue syndrome that I got the name of a doctor who was knowledgeable about chronic illnesses in a nearby town. I went to him and after some more testing I was diagnosed with chronic fatigue syndrome. With that I got access to the support and benefits I sorely needed.

Fast forward a few years when I moved out to go to university in Victoria and found a new family doctor there. When I presented my medical history and symptoms to him he diagnosed me with fibromyalgia.

Scotty Ireson and his girlfriend, Meg

3. What is the worst symptom you have experienced?

To put it simply, agony. Absolute agony. I sometimes experience pain so bad that it totally incapacitates me. It doesn’t work alone though. There are always a host of different symptoms that accompany the pain which makes it much harder to cope with. The whole experience is quite terrifying.

These flare-ups are only part of it though. I am never not in pain. It always varies and while I have identified a number of triggers, I can’t always predict how I will be. But it never leaves me alone, I am never comfortable. That wears you down.

4. How has your life changed since you were diagnosed with fibromyalgia?

It changed long before the diagnosis but that’s just one last gripe about how long it took to get that diagnosis in the first place.

I was an athletic kid. I loved sprinting in particular and was pretty good at it for a while. Even after my health started to grow bad I kept at it. But eventually my health worsened to the point of stopping me from being able to run like that. Over the years I have kept getting worse.

I have had disability status since I was old enough to apply for it and have to rely on the small amount of money that provides. These days I struggle to take care of myself, keep my house clean and other necessities. I maintain a social life but it is hard to keep from turning into a hermit. I have very limited stamina and any amount of stress brings on great amounts of pain. I have to be very careful with what I do. Unfortunately I have not been doing worse than ever in recent years.

5. What are the ways that you have been managing the disease?

I stretch every day and try to get light exercise when I can. I particularly like to go for walks. The amount of exercise I do is always a delicate balancing act though. I also eat a healthy diet with a lot of whole foods and cooking from scratch and I drink a lot of water. Basic healthy living things really.

Sleep quality is particularly important to keeping any level of functioning. That is difficult though with the pain and general insomnia I experience. I’m still searching for a sleeping medication whose tradeoffs I can live with. I don’t always succeed but maintaining good sleep hygiene is helpful.

I have a long term partner who also has health issues and we do our best to take care of each other. We also have two lovely cats. Our little family helps keep the morale up. I also have some great friends and family near me who help me out when I need it.

I also turn to art to keep my spirits up. Even though I spend a lot of time feeling miserable, it is nice to see I can create some beauty as well. Art has become an integral part of my life.

6. How do you personally manage the pain?

I essentially have difficulty functioning without medication. To that end I have prescriptions for gabapentin and marijuana. I would rather not be under the influence all of the time, but the un-medicated pain levels are far more debilitating. It feels like I am on a drug leash. I must always be thinking of my medication levels.

I try to keep my stress levels low. Practicing deep breathing techniques and stretching regularly helps as well. Baths and hot showers are also therapeutic. Keeping calm is really important, particularly when I’m really hurting. This often leads to me seeming much more chill than I feel. It is not easy to maintain though. Pain breeds panic and anger. Sometimes I just have to grit my teeth and bear it. Strength of will can carry me through quite a lot. But that is not an unlimited resource.

Escapism also plays a major role in helping me manage the worst of it. I particularly like video games for this. They take me out of my body, allow me to disassociate a bit. They also allow me to feel like I am doing great acts, even when my body isn’t allowing me to do much in the real world. Games also give me an outlet for the negative emotions that the pain can bring out. Much better to take them out on monsters made of pixels than the people around me or myself.