Monday May 7, 2012
Those of us with fibromyalgia and chronic fatigue syndrome can learn a lot from each other, and that's true regardless of age.
A recent Readers Respond from a teenager is a great example of that. She's having a rough time, but she's also finding ways to deal with it. Here's what she had to say:
"Well, I'm only 13, so you will think i don't know what its like, but honestly, I do. My friends to be honest aren't very nice about me having chronic fatigue. I take all my time trying to explain it to them and all they will say is 'oh' which really upsets me. I can't do the things I used to, and they think I'm avoiding them when I say 'sorry I really can't come out today.' A way to describe it could be 'it's a different sort of pain, which can't be described unless you have experienced it. Every day I am in some sort of pain, and some days I'm completely inactive. I have no energy, I'm always tired, but no matter how long I sleep, I don't feel refreshed.' A way to deal with it, for me, is finding something I really, really love. For me, it's music. Do things that you love! I listen to music and read about my favourite artists and look at pictures of them. It passes time and gives you a better state of mind! Hope I helped. xoxoxo"
She's exactly right: it is essential for us to find something we love that we're still able to do! Thanks for the words of wisdom.
What are the things you love to do that help you keep going? How do you explain your illness? Leave your comments below!
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Thursday May 3, 2012
Research Brief
Research presented at a conference called Experimental Biology 2012 suggests that chronic fatigue syndrome may involve reduced activity in an area of the brain called the basal ganglia. What's more, the worse the person's fatigue, the lower the activity in that region, researchers say.
The basal ganglia are located at the base of your forebrain. They're involved in multiple functions, including feelings of reward, motivation, cognitive and emotional functions, decision making, and involuntary motor control. All of these areas can be compromised in people with chronic fatigue syndrome. This study focused on changes in activity during feelings of reward.
Diseases that affect the basal ganglia are often associated with fatigue, as are drugs that lower activity there. Researchers decided to look at basal ganglia function after observing that the drug interferon alpha can cause extreme fatigue that's very similar to the unique fatigue of chronic fatigue syndrome.
The major neurotransmitter to operate in the basal ganglia is dopamine, which research suggests can be dysregulated in people with this illness. The researchers speculate that the reduced activity may also be related to inflammation. They say both of these issues could be important areas for future research.
Learn More:
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Monday April 30, 2012
We've had some unseasonably hot spring days where I am and they caught me by surprise! As a consequence, I got overheated a couple of times. Days later, my feet and hands are still puffy from it.
Many of us with fibromyalgia and chronic fatigue syndrome have heat sensitivity, which means our bodies get overheated easily and have a hard time cooling down. Getting too hot can lead to other symptoms, such as puffiness, achiness, headaches, dizziness, added fatigue, nausea and more.
It helps, this time of year, to come up with some ideas for keeping yourself cool for the next several months. You can find my ideas here:
How do you keep from getting too hot? What helps cool you down? Leave your comments below!
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New From the Glossary
Photo © Darryl Leniuk/Getty Images
Saturday April 28, 2012
Blog Classic: July 22, 2009
When you have fibromyalgia (FMS) or chronic fatigue syndrome (CFS or ME/CFS), it can be hard to keep a sense of humor. Now and then, we need to make sure we're still able to laugh, and that we don't take ourselves too seriously -- one of my favorite movie quotes is from Steel Magnolias: "Laughter through tears is my favorite emotion."
Humor can even be a good way to get other people to drop that concerned, "How are you feeling?" approach you. After I'd gone public at work with being chronically ill (though still in search of a diagnosis, after several wrong ones), some people constantly asked about my health, while others avoided casual conversation. Then I saw a Halloween costume that was a beauty queen with the title Miss Diagnosed. I wore it to work on Halloween, made up to look even sicker than I really was, and carrying a bouquet of dead flowers. It was a huge hit, everyone laughed, and things were back to normal.
Toward adding some humor to your day, I've come up with and compiled some jokes that I hope will make you smile. Most of them work for both conditions -- just change it as needed.
- You know you've got brain fog when ... I'm sorry, what were we talking about?
- How do you snap someone out of brain fog? I'll tell you when it happens.
- You know you've got chronic fatigue syndrome when you wake up in the morning to get ready for your nap.
- You know you've got FMS when your cat thinks you spend too much time laying around in warm spots.
- How do you identify the grocery list of someone with ME/CFS? It's on the table at home.
- You know you've got fibromyalgia when you refer to Vicodin as "the mild stuff."
- I used to know a lot of jokes about ME/CFS, but I forgot them all.
You might have FMS/ME/CFS if:
- You've got your pharmacist on speed dial.
- You tell the cop you're driving slow because of the fog -- and it's sunny out.
- You fit the diagnostic criteria for both insomnia and narcolepsy.
- You've got more diagnoses than a nursing home.
- Your medical chart comes in several volumes.
- Old people avoid you because of how much you talk about your health.
If you have any to add, leave a comment below!
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Photo © Steve Wisbauer/Getty Images
