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Fibromyalgia & Chronic Fatigue Spotlight10

Impaired Sense of Time in Fibromyalgia & Chronic Fatigue Syndrome

Wednesday June 19, 2013

I absolutely cannot keep track of time, especially dates. It's been a problematic and stubborn symptom of fibromyalgia for me.

My biggest problem is in being aware of the passage of days and weeks. Holidays and birthdays creep up on me and catch me unprepared all the time. I'll know the date - like that my father's birthday is May 27 - but then I'm stunned to realize that it's the 25th, and it's too late to get a gift shipped to him on time. I really hate always being the late one, but I can't seem to get a handle on this particular issue.

The farther out something is planned, the worse it seems to be. It's like my brain files it under the heading "months away" and then never updates it to "next week." If something is set for tomorrow or a week from Thursday, I do pretty well. Those things apparently go into the "really soon" file and stay more on the radar.

While we don't have research confirming this, my suspicion is that many of us with fibromyalgia and chronic fatigue syndrome either have a learning disability called dyscalculia or something similar to it. It impacts a region of the brain that deals with all kinds of time, mathematic, spacial awareness, music, and remembering names. You can learn more about it here:

Do you have these kinds of problems, too? How have they impacted your life? Have you found ways to improve them? Leave your comments below!

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"My Mom in Pain," by My 11-Year-Old Son

Monday June 17, 2013

I just had to share this.

Along with all of the things my 11-year-old son brought home at the end of the school year was his writing journal. He said his teacher had told him I needed to read a particular entry, and this is it, unedited:

"When I was about 3ish well no 3 and a 1/2ish my mom had been sleep dipribed all her life. And she was allways in pain and would lay on the couch in pain because she had fibromyalgia. When she got home from work after me and my sister wher picked up from preschool my sister would always say "Mom, can I hug you... I'll be jentle." and she always would say it in the most soothing voice posible. And my mom would always say yes. That is the story I remember about my mom when she began to have the disease, fibromyalgia."

He's heard that story because my daughter's sweet question was what made me realize I had to quit my job. I was giving all I had to that job and it still wasn't enough, and that meant I had nothing left for my family. It was go home, take pain meds, and lay on the couch in agony. He was "3 and a 1/2ish" when things first started to go really wrong, and she was one. I quit when she was two-and-a-half and he had just turned five.

Now, my kids don't remember that time. My job - as a TV-news producer - was intensely stressful, so leaving that behind allowed me to start getting better. I can't do all the things healthy moms can do, but I'm grateful that they can have a lot more hugs now.

From having a mom who has at times depended on them for a lot, my kids have learned compassion and patience. They've had to do a lot for themselves since a young age, and while at times I've felt guilty for that, it's made them capable, confident, and self-reliant.

Fibromyalgia, chronic fatigue syndrome, and pretty much any chronic illness can force us to change the way we parent, but it doesn't mean we're any "less" of a parent. My kids always knew they were loved, even if they had to be especially gentle for me to express it, and that's what matters the most.

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Father's Day With Fibromyalgia & Chronic Fatigue Syndrome

Sunday June 16, 2013

Blog Classic: June 20, 2010

Whether you're a "good father" is not determined by how much you can buy for your family; how far you can run or throw a ball; whether you can wrestle on the floor with your children.  A good father is a man who loves his children, provides them with the safest, happiest home he can, and is an example of how to weather the adversities of life with inner strength and courage.  A man who faces every day through pain and exhaustion but still works hard to be a good father is a true hero.

To all fathers living with these illnesses, I hope you're well enough to enjoy today.

To all children of men with these illnesses, I hope you understand how much he loves you and wishes he was more able to do things with and for you.

For a better understanding of the special challenges faced by these fathers, please read A Tribute to Dads With Fibromyalgia & Chronic Fatigue Syndrome.

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Weather's Influence on Fibromyalgia Symptoms

Friday June 14, 2013

Research Brief

A new study suggests that weather does not have a uniform effect on people with fibromyalgia. However, researchers concluded that some individuals with the condition are sensitive to certain weather conditions.

For about a month, they looked over symptom reports from people with fibromyalgia and then compared them to 50 different aspects of the weather. While some people did seem to react to certain conditions, they didn't find any consistent patterns.

This is something many of us probably could have predicted, from having conversations with our fellow fibromites. Some of us are heat sensitive, some of us are cold sensitive, some of us are both. Some are bothered by wet weather or barometric pressure changes. Some don't have any particular reaction to the weather. As usual, nothing applies to all of us.

Misleading Headlines

I've been annoyed by a lot of the headlines I've seen on stories about this study. Most of them simply declared weather had "no impact" on fibromyalgia symptoms. It's one of those cases where people who scan headlines (which, let's face it, is most people these days) will get the wrong impression. So when your son or coworker or neighbor tells you you're wrong about your weather sensitivity, you'll know where it came from!

This conclusion doesn't match those from a study last year, either. That paper said increases in humidity, rain, and heat could lead to more pain the next day for some of us. Those researchers said weather conditions seem irrelevant - it was the changes that got us. You can read more about that study, as well as a poll on what weather bothers people like you, here: Effects of Heat, Humidity & Rain.

I personally have issues with both heat and cold. I haven't paid enough attention to know whether the changes above or in barometric pressure has any effect on me.

Learn more:

Do you have temperature/weather sensitivities? What do they do to you? What helps? Leave your comments below! (Please understand that comments may not appear immediately.)

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