OK, what’s up with this, Canada?

A lot of that stems from the fact that fibromyalgia, chronic fatigue syndrome and Multiple Chemical Sensitivities aren’t recognized as chronic illnesses, Bested notes, and consequently receive no funding for research. Nor do they figure well in resident training.“At the government level, they’re invisible.”

Yet last month, Canada became the first country in the world to ban blood donations from people diagnosed with chronic fatigue syndrome in the wake of groundbreaking study published in the prestigious journal Science, advocates point out. U.S. researchers discovered a human retrovirus, XMRV, that could be linked to CFS. The move was a precautionary measure as it’s feared the virus, which closely resembles the AIDS virus, could be transmitted through blood transfusions. Australia followed suite a few weeks later.

“We can’t get funding because we’re not considered a chronic illness, and yet they won’t take our blood,” Saraiva says.
“We’re dealing with powerful, wealthy insurance companies who have a bottom line,” Samosas says. “A lot of people have had horrendous cases in court with CPP and fight for years.

Clinical depression often blamed before diagnosis of fibromyalgia, Healthzone (Canada)

Seriously, what gives? How about we drag you kicking and screaming into the 21st century? With all the talk about how the Canadian system is a model national health care policy, can we not live in the Middle Ages here?

I seriously doubt the U.S. is much better in its level of funding of fibromyalgia and other chronic pain research but here’s the thing: chronic pain costs money. A lot of it. Add up the doctor’s bills, the prescription costs, the lost time and productivity for businesses whose employees suffer from it … you’re looking at a big number.

Fibro and chronic pain conditions are not a “lifestyle choice.” They’re debilitating diseases, and it’s time to stop treating those of us with these conditions as if we’re lying liars who lie and just want to sit on our asses all day eating bon-bons. I don’t know a single fibro sufferer who wouldn’t give her or his right arm to be able to work and live like they used to again.

So shut up, already, and be nicer to us. It could be you in this position one day.

You’ve undoubtedly seen the headlines lately. FMS Global News (a highly recommended news site for fibro patients) shares the skinny in this post (attributed to WebMD):

Lose weight while you sleep. It sounds like something you would hear on a late night infomercial — just around the time you are reaching for that bag of cookies because, well, you cannot sleep.

But as wild as the idea sounds, substantial medical evidence suggests some fascinating links between sleep and weight. Researchers say that how much you sleep and quite possibility the quality of your sleep may silently orchestrate a symphony of hormonal activity tied to your appetite.

“One of the more interesting ideas that has been smoldering and is now gaining momentum is the appreciation of the fact that sleep and sleep disruption do remarkable things to the body — including possibly influencing our weight,” says David Rapoport, MD, associate professor and director of the Sleep Medicine Program at the New York University School of Medicine in New York City.

I highly recommend reading the entire post, because the article covers three different experts’ take on the connection between sleep and weight.

Probably the worst of the symptoms for me, personally — at least in an emotional sense — is the impact fibromyalgia has on sleep. When was the last time I slept through the night without waking up from the pain or at the very least tossing and turning? I don’t honestly remember. My new “normal” is waking up several times at night, sometimes not getting to sleep for four or more hours after I turn in, sometimes getting to sleep quickly enough but then waking up at 3 in the morning and not being able to sleep again until the next night.

The impact on my pain levels from this sleep havoc is bad enough, but emotionally it’s even worse. It just feels rotten, creepy, miserable, scary, and just plain weird to be the only one in the world awake at 3 AM (or so it seems). Well, me and the kids from Paranormal State, I guess, who are busily engaged in their own version of Dead Time.

And is it any wonder that I’ve struggled mightily with my weight the entire time I’ve been dealing with this disease? No. No, it is not.

So what exactly is the connection between sleep and weight? It’s thought to be related to two hormones — leptin and ghrelin.  The first hormone, leptin, increases your feeling of satiety after you eat. Ghrelin, in turn, stimulates the appetite and makes you hungrier. So, when you lose sleep, leptin goes down and ghrelin goes up. Effect?  You get hungrier, but you don’t feel full. Talk about double jeopardy.

There may also be a link between sleep apnea (breathing difficulties during sleep) and being overweight. The article goes into more detail with this potential link, as well as other possible ramifications of the no-sleep cycle that fibro causes.

It’s not just fibro either — any chronic pain condition can be the cause of insomnia.  Although it’s obvious more research needs to be done, it looks like there’s enough information there to make sleep an even bigger priority for us all. Without proper, adequate rest, none of us are going to feel better, and too many of us are struggling with the excess weight which can just exacerbate the pain levels. Sleep loss isn’t some cute punchline to a late-night joke. It’s serious stuff.

How do you deal with insomnia? Personally, I give up early. I’ll lay there for maybe 30 minutes but no more. Then, I get up and get busy on something for at least 30 minutes. Usually I can get back to bed after a few hours. But it’s not enough to keep me out of a sleep deficit, so there are occasional naps each week.

What about you?