START A PETITION 25,136,189 members: the world's largest community for good
START A PETITION
x
May 26, 2012

Chronic Fatigue Syndrome unmasked

My personal quest to understand an
enigmatic and incurable illness
By Brendan K. Edwards


Ever heard of the yuppie flu? How about Chronic Fatigue Syndrome? Or perhaps you've heard of Myalgic Encephalomyelitis? If you're like most Canadians, you probably don't know that all three refer to the same illness. You may also be unaware that May 12 was International Chronic Fatigue Syndrome Awareness Day.
How do I know all this? Well, I've been battling CFS for the past six years.
When I look back, it is difficult to remember when it first began. But, by my fourth year at Ryerson University the fatigue had descended completely like a heavy fog. Reading, writing, focusing, even thinking, exhausted me. My brain, which had once functioned like a high-speed computer (or at least that's how I imagined it) now felt like a dusty filing cabinet.
I dropped out of journalism school and returned to Montreal, convinced that without the stress of university life I would bounce back from my burn out. Little did I know that the mind-numbing fatigue was only the first in a lengthy list of symptoms that would dominate my life for a long time to come.
CFS may sound benign, but if you think that all a sufferer needs is a power nap, you are sadly mistaken. CFS is an incurable disease that ravages the immune system and leaves many completely debilitated. Its most common symptoms are extreme exhaustion, cognitive dysfunction, extended loss of energy following minimal exertion, swollen lymph nodes and sore throat.
About a year after I quit school, I began to develop all of these symptoms and more. I had serious stomach pain every night due to gluten intolerance and a number of other new food allergies. I also became highly sensitive to chemicals in cleaning products and developed strange aches and pains all over. Most frustratingly of all, I still had no diagnosis.  I spent my days frantically scheduling appointments with doctors all over the city and my nights scanning online health forums for clues. As time passed, I felt increasingly powerless and isolated. Finally, I found a book on CFS and began to connect the dots.
Unfortunately, my family doctor was not convinced and like a majority of Canadian GPs, refused to recognize CFS. As far as he was concerned, all of my symptoms stemmed from clinical depression. Sadly, the exclusion of CFS in favour of a diagnosis of mental illness is a common thread that runs through far too many patients' stories. Alison Bested, a CFS specialist based in Toronto, has noted that up to 85 percent of her patients have been told that their problems are purely psychological. Couple that with the fact that there are only a handful of Canadian CFS specialists and it is easy to see why CFS patients reported some of the highest rates of unmet health care needs in the 2010 Canadian Community Health Survey.  
When I embarked on my own search for a specialist in Quebec about four years ago, I was told that none existed. In the end, I had no choice but to visit a CFS centre in Connecticut. Finally, after multiple trips to the U.S. and a slew of tests for everything from Lyme disease to sleep apnea, I received an official diagnosis.  
Although there is no cure for CFS, there are many lifestyle changes one can make to adapt. I've completely overhauled my diet, eliminating gluten, sugar and a number of other foods. I've also learned to pace myself so I don't burn out as often.
Overtime, I've learned to live a life within the boundaries of my illness and I know that I can count on the support of my family and girlfriend when my symptoms start to flare up. Unfortunately, there are thousands of Canadians with CFS who can't say the same. They have not only been dealt devastating blows to their health but also suffer from economic hardship and social isolation. Hopefully, when they tell their stories, some of us will listen and lend our support.


Brendan Edwards was one of the founding editors of Montreal's Siafu magazine.

Visibility: Everyone
Posted: Saturday May 26, 2012, 8:03 pm
Tags: me cfs chronicfatiguesyndrome chronicillness yuppieflu

Group Discussions
Comments
Or, log in with your
Facebook account:

Jenny Dooley (830)
Saturday May 26, 2012, 8:32 pm
http://thesuburban.com/news/articles/?id=article00235

Brian M. (156)
Wednesday June 6, 2012, 10:17 am
Thanks for posting this. I was diagnosed with FMS, fibromyalgia syndrome, in 2005. The symptoms that you describe fit my experience quite well, though I also have incredible pain regularly. Do you experience heightened pain sensation as part of your CFS experience?

Cheryl B. (203)
Tuesday September 25, 2012, 1:06 pm
Wow, this is one of the most informative writings on CFS I have read because it includes so much information. Without your personal experience with this, Thubten, it would be void of the information that makes one nod "yes" if they are experiencing the same symptoms. I have heard that it has often been classified as "depression" which is infuriatingly frustrating. Thirty-five years ago, doctors looked at women with PMS, which had no name then, as though they had some psychological defect. That in itself is enough to cause depression. Thank you so much for this well-written explanation of just what CFS feels like and how much it is still not understood and properly diagnosed.

Author

Jenny Dooley
female , committed relationship, 2 children
Sydney, Australia
JENNY'S SHARES
Apr
25
(1 comments  |  discussions )
FOODS THAT SOOTHE ARTHRITIS PAIN adapted from an article by Stacey Colino in iVillageThere’s no proven anti-arthritis diet, but certain foods may make a difference in your symptomsThe Mediterranean diet is strongly anti-inflammatory. ...with les...
(5 comments  |  discussions )
\nSIX FOODS THAT WEAKEN BONESAdapted from an article by By Melanie Haiken, Caring.comSome ingredients actually leach the minerals right out of the bone, or they block the bone’s ability to regrow. Learn about Salt, Soft Drinks, Caffeine, Hydrogen...
Apr
3
(2 comments  |  discussions )
\nCANCER-KILLING CURRY: TURMERIC - from Care2 healthy living, April 2012 .\r\n\r\n\r\n Tests released by a team at the Cork Cancer Research Centre show turmeric can destroy gullet cancer cells in the lab within 24 hours. Turmeric is a wonderful spice t...


SHARES FROM JENNY'S NETWORK
Mar
31
(1 comments  |  discussions )
\\nZEN was suspended by Eric with no warning. We don\\\'t know any reasons nor how long it will last....\\r\\nI asked about it on the forum but my post was immediately deleted. 2 threads and petitions about Zen also. And 2 her help-groups. :-(\\r\\nUntill to...
Feb
18
(0 comments  |  discussions )
Look Grandma I can stand!!
(0 comments  |  discussions )
Bath time is FUN time!!
(0 comments  |  discussions )
I love it when someone reads too me!!
(0 comments  |  discussions )
Just pink!!  I am the best Valentine you could have! Think Pink!


MORE MEMBER BLOGS
Mar 31
Blog: How to Extend the Life of your TRIAD Boilers by Kayleigh L.
(0 comments  |  discussions ) — \\nHow to Extend the Life of your TRIAD Boilers \\r\\n \\r\\nCorlis Engine Review\\r\\nEvery user desires to prolong the life of a unit. TRIAD assists their clients in achieving this important objective by informing them of ways they can avoid problems... more
Feb 27
Blog: Dr Oz Weight Loss - The 100% Natural And Very Efficient Diet Pill by Debra S.
(0 comments  |  discussions ) — \\nYes, Dr. Oz called Garcinia Cambogia Extract (HCA) the Holy Grail of Weight Loss. He went on to say, “Anytime I see a scientist get this excited about something like Garcinia Cambogia Extract and when I looked through some of this research and... more
Blog: My Favorite Websites by krysta I.
(0 comments  |  discussions ) — \\nIFAW: www.ifaw.org\\r\\nOCEANA www.oceana.org\\r\\nPETA: www.peta.org\\r\\nEARTH 911: www.earth911.org\\r\\nANI MALs ASIA: www.animalsasia.org\\r\\n \\r\\n\\r\\n\\n more
Feb 21
Blog: testing one two three by Geoff M.
(0 comments  |  discussions ) — hello world more
Blog: Garcinia Cambogia Reviews From Actual People Garcinia Pure Extract Is A Huge Success February 20 by Dany M.
(0 comments  |  0 discussions ) — \\nGarcinia Cambogia Reviews From Actual People Garcinia Pure Extract Is A Huge Success February 20\\r\\nGarcinia Cambogia System The Dr. Oz Lose Weight Quick Process Without Having Side Effects\\r\\nHe went on to say, “At any time I see a researcher... more
 
Content and comments expressed here are the opinions of Care2 users and not necessarily that of Care2.com or its affiliates.