Friday March 18, 2011
I don't believe I've ever talked to someone with fibromyalgia or chronic fatigue syndrome who didn't have a single other chronic diagnosis. Something scientists are still sorting out is which problems are risk factors for these illness, which problems are consequences of them, and which could actually fit into either category, depending on the individual.
In last week's poll, I asked which conditions came before you developed fibromyalgia or chronic fatigue syndrome and got more than 2,500 responses. This week, let's look at the flip side of that coin -- what problems came later?
While we can have a whole host of them both before and after, I chose some especially common ones for last week and I'm using the same ones this week. After you take the poll, leave a comment to let us know what other conditions you're dealing with.
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Wednesday March 16, 2011
Sleep is a huge problem for just about anyone with fibromyalgia and chronic fatigue syndrome, to the point that some doctors won't even give these diagnoses to someone who doesn't have them.
Most of us don't sleep in long stretches, and insomnia is especially common. That can mean we end up napping frequently and sleeping at odd times. My sleep schedule has been a mess for the past few months! It makes it hard for me to get my kids to school, make it to appointments, and function in sync with the rest of the world to any degree.
As a life-long insomniac, I've read a lot of bad advice about correcting a messed-up sleep cycle. The one I've seen most often is, "Go to bed an hour earlier each night." That makes me laugh! Seriously, if I go to bed a 1 a.m. lay awake until 3, is going to bed at midnight really going to help? Believe me, I've tried it often enough to know that going to bed an hour earlier means laying awake that much longer, and becoming that much more achy and frustrated.
Then, several months ago, I read about a different approach, and for once it seemed to make sense -- try to stay up 4 hours later each day until you're sleeping when you want to. That seemed like something that could actually work, at least in theory.
The biggest flaw with that idea is that it just doesn't work with the typical lifestyle. If you actually have a job, forget it! Kids? Another complication.
I work from home on my own schedule, so that helps. However, 3 days a week I have to get my son to school at 9 a.m. and my daughter to school at 12:30. So often, it's painful to get him there, and then I either nap or fight off sleep for the rest of the morning. As I've been unable to sleep until later and later, I've tried a few times to just stay up, but sleep always overtakes me at a bad time.
Then, feeling especially bad on Monday, I slept all afternoon. Then I couldn't sleep at all Monday night. I was actually happy -- this was my chance to really change my schedule! I fought to stay awake until my daughter was on the bus, then crashed hard for 7.5 hours. It was a better quality sleep than I've had in months. Now, it's 2:30 a.m. Wednesday morning and yes, this is when I'm choosing to work! My goal is to stay awake until 3 or 4 p.m. today, then 7 or 8 p.m. tomorrow, which would actually put me (gasp!) on kind of a normal, functional schedule. I don't expect it to last forever, but if I can get a few good weeks out if it, I'm happy.
What sleep challenges are you facing? Have any methods helped you get your schedule straightened out? Do you thing the 4-hours-later-each-night method would work for you? Leave your comments below!
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Tuesday March 15, 2011
Research Brief
A new study shores up support for the theory of central sensitization in chronic fatigue syndrome (ME/CFS). It also connects specific types of migraines with sets of ME/CFS symptoms.
"Central sensitization" describes a state in which the central nervous system becomes hyper-reactive to stimulus. It's a recognized feature of several chronic pain conditions, including migraine. Its role in ME/CFS remains controversial.
In this study, researchers looked at 2 cohorts, which each contained an ME/CFS group and a control group. Cohort 1 contained 571 people, while cohort 2 contained 88 people who were studied more intensively.
In both ME/CFS groups, they found that migraines in general were considerably higher than in control groups:
- ME/CFS Groups = 84% & 81%
- Control Groups = 5% & 45%
Researchers concluded that the high prevalence of migraine in ME/CFS suggests that mechanisms of migraine such as central sensitization may contribute to the pathology of ME/CFS.
When looking at specific types of migraines and other headaches, they found:
- Migraine without aura = 60%
- Migraine with aura = 24%
- Tension headaches = 12%
- Migraine + tension headaches = 67%
- No headaches = 4%
Participants who had migraine with aura also had higher severity scores for multiple ME/CFS symptoms, including poor memory, dizziness, balance problems, numbness, rapid heart beat, perceived hearth rhythm abnormalities and non-cardiac chest pain.
Those who had migraine without aura had lower pain thresholds and were more likely to have co-morbid fibromyalgia. Fibromyalgia is also linked to the central-sensitization theory.
Do you have migraines along with ME/CFS? Do your symptoms match those linked to migraines with or without aura? Leave your comments below!
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Saturday March 12, 2011
The brain fog of fibromyalgia and chronic fatigue syndrome makes a lot of mental tasks harder. Reading, remembering we've read, math, spacial relationships, logical deduction -- they can all suffer. Struggling through these muddled mental task can be frustrating, especially when it's something that used to come easy, and frustration very often leads to more pronounced symptoms. It can be tempting to just give up.
However, giving up is likely to make things worse for you cognitively. You may have heard the term "use it or lose it" in connection to mental abilities? It's true on the most basic physiological level.
When you think, read, learn and do other things in your brain, you form connections between neurons (the brain cells of the gray matter.) Those connections form pathways through the brain that help you perform the same task, use the same ability, or remember the same thing later on.
Think about foreign language classes you took years ago. How much do you remember? If you took a few classes and then didn't use the language afterward, probably not much. You formed all kinds of new connections in your brain in order to learn all of that -- but now it's gone, like chalk from a blackboard. Why is that?
What's going on is that your brain is trying to perform at maximum efficiency by getting rid of things it's decided it no longer needs. Your brain actually prunes long-unused connections like a gardener pinching back spent buds on a rose. The more connections related to a specific task you use, the harder it will be for you to perform that task down the road.
To keep these connections, and therefore abilities, we need to use them. I'm not saying we should continue as if nothing is wrong. Over-taxing our brains, like over-taxing our bodies, can make us feel worse. We need to start simple and work up to more complex tasks. If reading has gotten difficult, start with short magazine articles or blogs. If numbers are a problem, play number-based games like Sudoku. I've actually benefited from helping my kids with their homework!
Tackle one area at a time so you don't overwhelm your brain. It'll get easier eventually, and then you can move up to something more complicated. It could take awhile, but the increased function you gain will be well worth it.
Have you been able to rebuild some of your cognitive function? How did you do it? Leave your comments below!
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