Most of the posts on my blog are about gluten-free recipes, and that is what I really love sharing with you. But today, I feel it is important to share an article about a subject, that for me, I would rather keep to myself and pretend it didn't exist.
I have learned this method is not the best way to cope with the problem, but still it's not something I enjoy writing about. Unfortunately, I am very aware today of how this illness has changed my life as I try to compose this paragraph and work through the cognitive issues that make writing more difficult.
Since May 12 is the National Day of Awareness for Fibromyalgia and Chronic Fatigue Syndrome, I am stepping out of my comfort zone in order to raise awareness of this syndrome. I share with you the following article written by Adrienne Dellwo. Thanks Adrienne for putting this all together to help others understand what is known about CFS.
Understanding Chronic Fatigue Syndrome: A Simple Explanation
This Goes WAY Beyond Tired!
Updated March 22, 2011
Chronic Fatigue Syndrome vs. "I Get Tired, Too"
We all get tired. It's part of life, and especially part of modern life.
Think for a moment about the last time you were really tired at work. It's harder to focus, harder to function, but you can push through it.
Now think back to the last time you were really sick with something like strep or the flu -- too sick to work, and too sick to function. Can you remember how exhausted you were, how hard it was to get out of bed and even take a shower? When you're sick like that, it's like your body just shuts down and demands that you rest.
There's a big difference between the two types of tired, right? That second kind of tired is what people with
chronic fatigue syndrome (CFS or
ME/CFS) deal with every day. They're not just sleepy, and they can't just push through it. They're so wiped out that their bodies demand rest and sleep constantly.
"Several years ago I was put under anesthesia for a dental procedure. I amazed the nurse and surgeon when I woke up because I was reading and chatting away. They couldn't believe how functional I was; the nurse actually called a couple of people over. I realized my 'amazing' ability was a result of fighting through CFS fatigue for years."
Most people who are regularly tired can trace it to some aspect of their lives -- they don't get enough sleep, they're too busy, they're under too much pressure, etc. People with ME/CFS, however, don't have an obvious cause of fatigue. Usually, they were perfectly healthy people one day and no longer healthy the next.
What Does Chronic Fatigue Syndrome Do to Your Body?
In most cases, chronic fatigue syndrome comes on suddenly. While scientists don't yet know exactly what causes it, a growing pool of evidence points to a combination of genetic predisposition and exposure to viruses or toxins. Many cases start after a flu-like illness, and some of the symptoms simply never go away.
What many experts believe is going on in the body of someone with ME/CFS is constant immune system activation, as if the body is trying to fend off illness. Working that hard all the time is a big drain on the body, which is part of the reason we all get so tired when we're sick.
Beyond Fatigue
As if that level of fatigue weren't enough to deal with, chronic fatigue syndrome can bring a host of other symptoms. Experts recognize about 45-50 of them, and each person deals with a different mix of symptoms and levels of severity.
Common ME/CFS symptoms include:
- Sleep that isn't refreshing
- Muscle and joint aches
- Headaches
- Sore throat
- Swollen lymph glands
- Cognitive problems
The cognitive problems associated with ME/CFS are sometimes severe. Regardless of how intelligent the person is, he or she may become forgetful, be unable to recall common words, frequently lose a train of thought, or sometimes become confused. Simple tasks such as reading a newspaper, cooking a simple meal, or finding your car in a parking lot become daunting and overwhelming. In many people, cognitive problems are so severe that they chose to stop driving completely.
Well-meaning people frequently tell those with ME/CFS that they'd feel better if they'd get more exercise. Most people do get an energy boost from exertion, but people with ME/CFS don't. They have a symptoms called post-exertional malaise, which means that even small amounts of exertion can make all of their symptoms worse for a couple of days. Since deconditioning can add to the fatigue and weakness that ME/CFS patients face, a gentle graded routine is one of the treatment recommendations.
Chronic Fatigue Syndrome, Disbelief, and the Need for Support
Imagine suddenly feeling sick and exhausted all the time and having someone tell you you're not really sick. People with chronic fatigue syndrome face that all the time. Some doctors say they're depressed or that it's all in their heads - or they're just whiners or hypochondriacs. It's also common for them to tell someone, "I have chronic fatigue syndrome," and hear something like, "I think I have that, too. It seems like I'm always tired."
Because we don't yet have a good diagnostic test for ME/CFS, sometimes it's hard for people with the condition to convince the people around them they're really sick. It can strain marriages, drive friends apart, and make work conditions especially stressful. People with ME/CFS often end up feeling isolated, which compounds the depression that frequently goes along with any debilitating illness.
Some people with ME/CFS find medications, supplements and life-style changes that help them feel better, but it's a long, difficult process of experimentation and not everyone finds things that make a big difference. So far, no drug is FDA approved for treating ME/CFS, and no treatment works for everyone.
Chronic fatigue syndrome can take someone who is educated, ambitious, hardworking and tireless, and rob them of their ability to work, clean house, exercise, think clearly and ever feel awake or healthy.
- It's NOT psychological "burn out" or depression.
- It's NOT laziness.
- It's NOT whining or malingering.
- It IS the result of widespread dysfunction in the body and the brain that's hard to understand, difficult to treat, and, so far, impossible to cure.
Chronic fatigue syndrome is a serious, life-altering, frustrating, often misunderstood illness. What people with ME/CFS need most of all from those around them is emotional support and understanding.
A few more of my thoughts....
Maybe there is no "cure" at present, but I do know there are treatments that make my life better. One practitioner told me that my gluten-free diet is probably the reason why I do not have symptoms of fibromylagia. I tend to agree with that! Also, important is keeping a positive attitude. I choose to believe that healing IS possible!
Thank you for reading and hopefully you will share this with your friends.
As always, I wish you health and lots of love.
Debbie
