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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Thursday, August 2, 2012

Just Thinking: The Sleep and Weight Connection

                                                They look so deceptively cute when they're asleep!

Just in the last few days I've sort of been browsing the Internet to see if there were any good ideas left that I'd not considered regarding weight loss, or ideas I'd forgotten (very likely!).  It's strange how most of those who have CFIDS/ME/fibro and insomnia tend to have weight issues and everyone seems to blame the meds which need to be taken (valid point) and the inactivity, for legitimate reasons, on the part of the  patients (also a valid point).  However, the vast majority of "us" have too much weight and the lesser percentage of patients with these issues tend to have trouble keeping weight on.

What, pray tell, is it that makes for one group to gain and the other to have trouble keeping weight on?  It just doesn't seem to be all medicine and not enough activity, at least not in my case.  I've done a lot of thinking about it, thought back to my own early days of this illness and then thought about those whom I've personally known with the illness(es).

I'm not sure if anyone has looked into one theory I've come up with.  When I mentioned this to one of my doctors recently, he said that he'd never thought about it quite the way I had.  I tend to do a LOT of thinking, much of it outside the box, and I also have an awful lot of time on my hands, so, what else is there to do BUT think?

And so I can't help wondering if there isn't another huge factor involved here?

Could it be that in the first stages of this illness, sleeping so much in the beginning of CFIDS/ME may affect our appetite and weight?  I've stayed away from the sleep issue thus far mainly.  It's such a difficult and complex subject and each time I start a post on it, everything gets all jumbled up.  I want to get it ALL out there and can't seem to manage the "baby steps" approach.  I'm hoping that today's effort actually works!

In recent years it's become clear that when it comes to sleep - or lack of it - there are many hormones at play - and they all heavily influence our gaining or losing weight.  Basically, the less you sleep, the more poundage you put on, the more (as well as better sleep - very important point!) you sleep, the less poundage you put on.  I have to resort to simple explanations because I'm not a scientist, after all, only a patient. But what brought the sleep and weight relationship to the fore was when studies started to home in on appetite and specifically, research on the hormones leptin and ghrelin.  Doctors say that both can influence our appetite and studies have shown that production of both may be influenced by how much or how little we sleep.

Suddenly doctors saw that if a patient experienced a sleepless night followed by a day when no matter what the patient ate, he/she never felt full and/or satisfied, these doctors surmised that the patient was experiencing the workings of leptin and ghrelin.  According to the Atlanta School of Sleep Medicine "Leptin and ghrelin work in a kind of 'checks and balances' system to control feelings of hunger and fullness. Ghrelin, which is produced in the gastrointestinal tract, stimulates appetite, while leptin, produced in fat cells, sends a signal to the brain when you are full."

So what's the connection to sleep? "When you don't get enough sleep, it drives leptin levels down, which means you don't feel as satisfied after you eat. Lack of sleep also causes ghrelin levels to rise, which means your appetite is stimulated, so you want more food."

The two combined, the sleep specialists say, can set the stage for overeating, which in turn may lead to weight gain.

There's a whole lot more to this whole thing, but these are the latest basics. And I'm so glad the docs have finally figured it out - I've been telling them for at least 30 years but no one listened!  At least one neuro acknowledged his amazement and asked, "how did you know?"  My answer: "YOU try living my life and you'd know too!"  Note to doctors: please listen to your patients!

So, if in the early stages a patient with CFIDS/ME and fibro, sleeps a great deal of the time, can that explain why that person fails to keep weight on while others - ones who don't sleep - have trouble keeping it off?  I remember that when hubby and I first got married, he was shocked at how much I slept on the weekends.  We both remember my arriving home from work on Fridays and sleeping through till Sunday, on the living room couch, still in my work clothes, in our teeny tiny NYC apartment with hubby moving around and not waking me in the slightest.  

And is there a point where things get switched around?  That is, because of all too many factors, "we" eventually start having trouble sleeping: because pain sets in and interferes with any sleep patterns, as do school and deadlines, colicy babies, and so the hormones are off again and weight is put on, big time?

There are so many more issues at play here, but I did want to at least start this unorthodox dialogue.  I, personally, am really scared of the whole sleep bit.  It's getting harder and I'm getting older and I simply don't have the stamina needed to fall asleep - it's so much work -  because make no mistake, sleeping with no schedule, not enough hours for any period of time, and the lack of good quality sleep, all takes a huge toll on you.  However, at night I'm definitely not desperate enough to take rohypnol, the date rape drug one neurologist insisted on for two years!  Ambien has caused me enough trouble, thank you very much.  I'm not even going to mention the mess Lunesta got me into!  I'm trying to cut back as much as possible with those meds which make me gain weight (because I find it easier to function with less weight rather than more weight) and, of course, I check and recheck all my meds to keep track of side-effects which might interfere with sleep. I don't take ANY chances of ingesting anything that might interfere with sleep.

Is sleep the bane of people's existence out there, too?   Don't be shy. We'd love to hear others' experiences.

Here's to everyone feeling their absolute best, only better!

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