More on Sleep and Chronic Pain

Every morning I go ’round the webs and look for cool stuff, moving stuff, interesting stuff, maddening stuff on fibromyalgia, CFS, and any other chronic pain condition that anyone out there might be working on and writing about. One thing I was struck by this morning was the common theme of sleep disturbance, especially in light of the last post here about sleep and weight loss.

Here’s a post from But You Don’t Look Sick (which, as blog/site titles go, is fairly awesome). Who among us hasn’t experienced that creepy, achingly lonely and frightening feeling of being the only one in the entire world awake at whatever ungodly hour of the morning it might be?

At Strangely Peculiar, my fellow fibromite Excentric writes about the incredible benefits she experienced with a (gasp!) good night’s sleep, credit for which goes to Atavan. Let’s hear it for appropriate medication, folks!

And at How to Cope With Pain, published by a board-certified psychiatrist with extensive experience helping patients with chronic pain, there’s a whole page of links to helpful posts to assist you in getting that much needed and all-too-elusive good night’s sleep.

I have my own little rituals, of course, as we all do after any length of time spent living with these conditions. Mine include winding down, turning things off that have glowy screens (TVs, computers? I’m looking at you), a few minutes of light yoga and a few minutes of meditation. Then, I take 2 acetaminophen plus my hypertension meds, and crawl under the covers, fingers crossed.

What do you do to help yourself sleep at night? Have you tried medication? Let me know in the comments.

To Sleep, Perchance To … Lose Weight? Awesome.

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?

Is Fibromyalgia Degenerative Or Not?

When I was first diagnosed with fibromyalgia, my doctor (who, I’ll add, never-not-once implied the pain was all in my head) told me the disease was non-degenerative — meaning that as bad as it might get, it would not get continually worse over time. I clung to this like a drowning rat to a deck chair off the Titanic.

But now, I’m reading some things that suggest maybe the good doctor was misinformed. For instance: Dr. Mark J. Pellegrino. Now, in addition to being named after an awesome and overpriced imported water, Dr. Pellegrino both treats patients with, and suffers from himself, fibromyalgia. He even wrote a pretty helpful book called Fibromyalgia: Up Close and Personal. (Full disclosure: that’s an affiliate link and I’ll get, like, thirteen cents if you buy it from this link. Or something.) The guy knows fibro backwards and forwards, you might say. Dr. P. had this to say recently in an interview with ProHealth.com:

Q: Doctor, in your experience does fibro get worse over time or does it get better as you get older?

Dr. Pellegrino: In my experience from seeing more than 20,000 people with fibromyalgia over the past 20 years, I can say:

• About a third of the people do better over time,

• A third of the people stay the same,

• And a third of the people get worse.

So that means that two-thirds of the people will not get worse which is good.

Those who are diagnosed quickly after developing fibromyalgia symptoms and tried different treatments and find successful treatments are more like to do better over time. As we all get older, we tend to develop other conditions from degenerative factors, wear and tear, injuries, etc. that cause pain and can make fibromyalgia even more painful.

I think the key is not necessarily trying to get better, but trying to have a stable baseline where one’s function is good and a good quality of life is reported.

Now, obviously, this is one doctor’s experience. Granted, it’s extensive experience, but still — anecdotal. However, if a third get worse — even if it were somehow implausibly just his third — well, that’s a horse of a different color, as my father used to say.

This question is important to me personally because I have experienced such a downturn in my health in the last 12 months or so. Most of this downturn I can directly attribute to the other chronic conditions, but I also know fibro pain from my general back pain. I can tell which is which, and what I’m feeling is not just bad back pain. The fibro, when it flares, is definitely getting worse — although I haven’t seen a significant increase in the frequency of flareups, so that’s something, I suppose.

So what I want to know is this: what’s the general consensus? Is there a general consensus? Or is this disease as maddeningly unpredictable universally as it is individually?

Stupid fibro.

Welcome to “Euston Arch”!

Welcome! The first inaugural post of a blog should be something besides “Hi, hello out there in blogland, this is my first post.” So, I thought I’d do something a little different — an interview with myself. Hey, why not? I know what questions to ask. Plus, I won’t go all “that’s off the record” on myself, either.

Here we go!

So, Annie, thanks for the interview.

Oh, you’re welcome, Annie. My pleasure. Thanks for the interest.

First things first, I suppose. Why is this site called “Euston Arch”?

Well, Annie, several reasons really. Initially, of course, this site was called “The Tramadol Diaries” – because while I never wanted to take pain medication, when it came down to that (after everything else didn’t work for four long years), those little white pills saved my life.  And it was a little inside joke. See, I wanted this site to have a conversational, slightly confessional tone to it. So the “Diaries” part was a no-brainer. Together, it just sounds funny. Tramadol Diaries. Kinda like “True Confessions” or “Victoria’s Secret.” Maybe not as pretty.

But then Google dissed me. Or rather, my site. Or rather, my site name. It doesn’t like the “T” word. And then my good Doll buddy, Carolie Brekke, suggested “Euston Arch.” It sounds like tramadol. It calls up visions of gorgeous totally-not-Barbie-dolls in wicked awesome clothes doing wicked fun things. And thus, the site was (re)born.

Wait. Go back a second. Tramadol saved your life? That’s a pretty bold statement.

Well, it’s true. I wrestled with fibromyalgia symptoms and pain from degenerative disk disease and scoliosis for several years, using only over the counter pain relievers and conservative treatments. I tried everything that was available to me — chiropractic, traditional Chinese medicine, acupuncture, supplements, guaifenisin, special brands of yoga therapy — nothing really worked for me, not completely. Then I read a study abstract that concluded tramadol plus acetaminophen worked well in some fibro patients. So, I tried it. And it worked for me.

What does “worked” mean, exactly? What was the difference in your pain level or your daily life, if you will?

It was the difference between “coping” and “living.” See, I was functional all along, although sometimes just barely. But I was always in a level of pain that prevented most physical activities, including playing with my daughter and housework. The housework part I didn’t mind so much but the playing with the kid? That one was bad news. The combination of tramadol and acetaminophen let me regain some measure of physical activity.

So are you all better now?

I wish. Far from it. I still have flareups — lately, I’ve had a lot of bad ones. See, as my other chronic conditions get worse they seem to trigger fibro flares. When that happens, it’s like a really bad flu, all the time. Horrible aches and pains, complete lack of energy. Even pulling the bedcovers up over my torso makes my arms feel like I’ve gone ten rounds with Tyson in the ring.

What do you do during flareups?

Cry. Whimper.

No, not really. I try to avoid that, if possible. It never makes me feel better to sink into that feeling. I try to embrace the concept that there’s pain, and then there’s suffering. Pain may not be optional for me, but suffering? Totally optional.

So, if I can muster the energy, I sink into a very warm bath for a long, long while. If not, I take an extra acetaminophen with a tall glass of cool water with a dash of lemon juice, and lie down wrapped up in blankets (warmth tends to relieve the symptoms). While I’m lying there, I try to quiet the negative self-talk and count my breaths. Anything to stay in the moment and away from that spiraling “what this pain is going to become tomorrow?” feeling.

You say it got worse recently. What’s that been like?

Well, it put an end to my legal career, prematurely. I’d planned to resign for some time but not quite this early and certainly not like that. But I had to face the truth in 2009 — that I just could not continue to do the job, not in the way the clients needed me to. So, I resigned. Now, I’m focusing on transitioning into full-time writing and coaching, two things I am very passionate about and love to do. Plus, I think I’m better at that than being a lawyer, frankly. Lawyering was always something of a tortuous exercise for me — it didn’t come naturally the way writing and coaching seem to.

And what’s next for you?

Well, I hope to grow this website into something valuable for all chronic pain sufferers. No matter what the underlying condition might be, we all have similar obstacles to face. We have to renegotiate life, basically, on completely new terms. There are legal issues, and relationship struggles, and parenting crises … basically every aspect of life is impacted by chronic pain. I want to help others navigate that obstacle course and do something more than just live through it. I want to help others bring joy back into their lives.

So, I’m writing a book, which for now is tentatively titled The Euston Arch’ Thrival Guide to Living Beautifully With Chronic Pain.

Anything else we should know?

I hate liver. Also: humid heat.

But you lived in coastal South Carolina. For — like, ten years.

Actually it was thirteen years. Yeah. I know. Not too bright, huh?