Nigel Thom is a volunteer with the Fibromyalgia Well Spring Foundation and when asked to describe the medical condition, he paused for a few moments before answering.
“If you have ever had a migraine headache, imagine that pain. Now imagine that you’re experiencing that sort of pain in every muscle in your body… all the time.”
Although Thom does not suffer from the condition, he has worked closely with those who do and has made it his life’s passion to help those with fibromyalgia.
Over the years, he has organized and participated in a host of events to raise money for research and to help increase awareness of the illness.
In May of 2016 the organization engaged in an epic walk from Aldergrove to Banff/Canmore. The event spanned more than a month ( May 24 to June 29) and the team was understandably proud of their achievement.
“It was a major undertaking for us, but when it was done, it was an incredible sense of accomplishment,” said Thom.
On May 11th of this year, the group hosted their 11th annual Celebration Dinner to raise awareness on National Fibromyalgia Day and, on June 16th they were at the Langley Community days where they manned a information booth.
The group has two events upcoming in Aldergrove, and is enthusiastically preparing to raise even more funds and, more importantly, spread awareness of the condition.
Between July 20 and 22 they will be at the Aldergrove Festival Days (beside the Aldergrove Community Secondary School) where they will be engaging the community and enjoying the festival as well.
“For this event, we really do need some assistance from community volunteers to help setting up the big tent,” said Thom.
“And, as always, we can always use more volunteers to help man our booth. Anyone who wants to volunteer can contact us at 778 278 3697.”
But perhaps the event that Thom is most anticipating, just for the sheer fun of it all, is the 8th Annual Western Hoedown. It’s an evening of country western fun mixed with information about fibromyalgia.
That event will be held on Saturday, August 11 at 25039-8th Avenue in Aldergrove and will feature live music by Rick Chadwick and Nigel Tucker as well as Darlene Cozart and Friends.
“This is a real family event,” said Thom.
“There’s going to be food and games for the kids an a silent auction and regular auction. And of course, there’s going to be some dancing.”
Beyond the entertainment value of the event, Thom stressed that the foundation is always trying to increase the public’s knowledge of the illness.
“This is an invisible condition, and that makes it very difficult for people to understand. Sometimes the sufferers are not believed, with friends, family and associates tinking that the illness is “all in the heads” of those in pain.
The people with this disorder are feeling very real, sometimes debilitating pain, and the fact that there is no visible symptoms makes it very difficult for those who are suffering from fibromyalgia,” explained Thom.
“Those with the illness have lost jobs, been left by spouses and been accused of just being depressed. That’s not what this is about.”
Thom said that, although the medical profession acknowledges the illness and there is speculation that it is an auto-immunie disease, much more research is needed to understand the causes of the illness.
“It’s often brought on by stress or a traumatic event in a person’s life, and that has caused some to assume that it is a mental disorder.
But it is a very complex illness and many doctors really don’t know what to do with it. There is no known cure.”
Thom explained that the difficult nature of diagnosing the illness has also caused some discriminatory actions by employers who assume that employees with the disease are malingering and some insurance companies that refuse to pay benefits to those afflicted with fibromyalgia.
And at the same time, the emotional and physical toll of the disease has led some sufferers to take their own lives.
“In the 12 years I’ve been working with the foundation, we’ve lost 11 people to suicide in our community,” he said.
“People have to learn what fibromyalgia is and hopefully that will make it something they understand more fully.
These people are quite brave and are often dealing wiht their illness without much in the way of support from the community.”
Tickets for the Western Hoedown are available from the Fibromyalgia Well Spring Foundation, or by calling 778-278-3697.