Friday May 24, 2013
Packing, sitting for long hours, walking a lot, sleeping in a strange bed ... taking a trip is hard on those of us with fibromyalgia and chronic fatigue syndrome. If you're traveling this summer, you'll want to be well prepared in order to minimize the impact.
Notice I said minimize, not eliminate. Even healthy people can get worn out on a trip, so we can't expect to come through it unscathed. However, if you minimize the impact you may still be able to make the trip worthwhile.
You've got a lot of elements to consider, and hopefully these articles will help you start thinking about things the right way:
Are you traveling this summer? What elements are you worried about? What has helped you travel comfortably? Leave your comments below!
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Thursday May 23, 2013
Research Brief
A new study on chronic fatigue syndrome (ME/CFS) suggests that an autoimmune reaction to the neurotransmitter serotonin damages serotonin-sensitive brain cells. Researchers also concluded that high levels of bacteria move through intestinal membrane in people with ME/CFS, which is known to play a role in autoimmunity.
Researchers compared serotonin antibodies in people with ME/CFS, those with chronic fatigue who don't meet ME/CFS criteria, and healthy controls. They found that autoimmune activity against serotonin was more than four times what it was in chronic fatigue, and twelve times higher than in healthy people.
Serotonin autoimmunity was linked to more severe hyperalgesia (pain amplification,) fatigue, brain fog, autonomic symptoms, sadness, and flu-like symptoms.
Researchers say serotonin autoimmunity could be part of the underlying pathology of the condition, and their results provide support for ME/CFS being a neuro-immune disorder.
What it Means
In autoimmunity, your immune system basically gets confused and identifies a healthy, normal part of your body as a foreign invader that should be destroyed. It then treats it like a virus or bacteria, creating specialized cells that seek it out and try to get rid of it. This response leads to inflammation and a host of other problems.
Serotonin has long been believed to play a role in ME/CFS. In your brain, it's a neurotransmitter, which means it transports certain messages from one brain cell to the next. In the rest of your body, it's a hormone. The highest concentration of serotonin is in your digestive system, where it plays important roles.
Another known factor of ME/CFS is chronic immune system activity. Bascially, it's in high gear all the time, as if it's fighting an active illness. Autoimmunity could help explain this.
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Tuesday May 21, 2013
Boy, did I get overheated today!
That's nothing new to me, or to many people with fibromyalgia and chronic fatigue syndrome, but this was my first biggie of the season.
It happened while I was out pulling weeds in my flower beds. It needed to be done weeks ago ... but hey, that's life with chronic illness, right? It was in the high 70s, and my yard gets full sun for most of the day -- which seriously limits the amount of time I can spend out there.
I worked for about 45 minutes, with a couple of short breaks and a lot of water, then called it a day. I was pretty warm when I came in, but my temperature continued to rise, especially on my face. I took a cool shower, and then turned the water to straight cold and let it hit my face for awhile.
It felt great, but once I was out, I felt myself getting hotter again. My face was beat red, and my forehead wouldn't stop sweating. My husband pointed a laser thermometer at me and said my arm was around 86 degrees, and my cheek was 94!
I've dealt with this enough to know what helps (at least, for me) - drinking lots of cold liquid, putting an ice pack around my shoulders, and giving it some time. (If I hadn't had to leave the house, I would have soaked in cold water.) It's a lot better to prevent overheating than to try countering it, but that's not always possible.
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Do you overheat? What helps you cool down? Do you sweat excessively? Leave your comments below! (Please note that comments may not appear right away.)
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Friday May 17, 2013
What do you look forward to? Is there something that brightens your week, or your day?
If not, you may want to find something that gives you happy anticipation. I know, sometimes life looks really bleak and we feel like we'll never feel better, and things will never be okay again. But if you can find one thing to look forward to, it might help you get through the hardest times.
I've had a horrible time motivating myself for the past couple of months. My arthritis has been up and down, I'm still having digestive issues that the doctor hasn't been able to figure out, and I'm starting to get those little pin-prick pains that make me worry my fibromyalgia is coming out of remission. My sleep schedule has been a disaster. And I keep getting sick, thanks to the immune-suppressing arthritis meds.
As a result, I haven't been getting much done on most days. I've found myself longing for how I felt in November and December, when, somehow, I had enough energy to do my job, keep the house in almost decent shape, and found time to write a book.
I finished that book in January and then sent it off to several people to get their opinions. I've been waiting for them to get back to me until recently, and I've been concerned that I wouldn't have the energy or motivation to get a re-write done.
And you know what happened? I got their notes back. The prospect of having that project to work on, which is incredibly fun to me, has boosted my motivation once more. I find myself wanting to get my job done, wanting to get a little done around the house, all so I can work on my book without guilt or other distractions. What I've learned is that having something enjoyable to look forward to gives me the motivation to get more done.
After noticing this, I looked at my life in a new way. I realized that when I'm looking forward to getting together with friends, I'm more likely to get the house in shape. When I'm looking forward to a vacation, I'm able to get work done ahead of time so I can take the time off. It's not always easy, but it does consistently happen.
And then come the days, weeks, and months when I don't have that motivating factor. I feel more sluggish, it's harder to get myself moving, and I fall behind on everything.
I'm certain that part of this is my deadline-oriented personality. There's a reason I worked in TV news, with constant looming deadlines - I function really well that way, whereas I'll procrastinate forever if I can. But I have to wonder if some other people out there will have this in common with me.
I've decided that I always need a creative project in the works, something that I can look forward to as a treat for after I get a certain amount done. (Of course, I always have to keep pacing in mind and set realistic goals!) That "something" could be anything, though - a show on the DVR that you're excited to watch, a phone call you want to make, a friend you get to see in a few days, a book you want to read. As long as there's something.
Even if your health is bad enough that motivation is irrelevant and you can't do anything, looking forward to something can at least boost your mood. And when you're dealing with brain-chemistry problems, that can be a treatment in and of itself.
Does looking forward to something help you find motivation? Does it just drain your paltry energy stores? Does it boost your mood but nothing else? Leave your comments below!
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