Author Archives: Annie

Can Exercise Really Help Alleviate Chronic Pain?

I was asked to share the infographic in this post, and I decided to do so. I think there’s some information contained in it that could be helpful to some readers, and that’s pretty much my main criteria for whether or not to share something under the Euston Arch banner.

So, yep, thar she blows, and enjoy.

However.

I have … thoughts.

And y’all know me. I’m not genetically capable of being quiet.

So I’ve also shared those thoughts beneath the infographic. Please note those are my (considered, educated, but strictly personal) opinions, and not those of the infographic’s creator, that site, or anyone associated with that site. Mine, and mine alone.

First though, as with any new resource I share, I want to give a few warnings:

Every chronic pain experience — and condition — is different. Your experience may not correspond to someone else’s, even if that person has the same diagnosis as you do.
As with any new treatment modality or suggestion, whether it’s prescription medication, conservative, or surgical, please check with your own primary care physician first.
Your PCP can tell you whether the suggestions in this graphic are a good idea for you, given your specific condition and treatment plan, and how to proceed safely.

The Infographic

Put a Pep Back in Your Step: How to Exercise with Chronic Pain

Courtesy of: Pain Management and Injury Relief

Annie’s Thoughts on Exercise and Chronic Pain

The big problem with any blanket recommendation to chronic pain patients to “Just exercise more!” is post-exertional malaise. One researcher called PEM “an illness within an illness,” and I think that’s about as accurate a metaphor as any you’ll find.

PEM hits people with a variety of CP-related illnesses, one of the most common being ME/CFS (or “chronic fatigue,” as some erroneously refer to it). Fibromyalgia also carries an increased risk of post-exertional pain and malaise.

And what you may not know is that even though PEM is a self-reported symptom, and thus treated just as skeptically as any pain, researchers have actually proven it’s real .

PEM isn’t simply the muscle soreness healthy individuals often experience after exercise. That soreness is a normal physiological response. PEM is wholly different. It usually represents a worsening (sometimes significantly so) of already existing pain levels.

And it’s triggered by exertion – i.e., by exercise. Hence, the name “post-exertional malaise.”

(Although to be honest “malaise” always sounded to me like something a Victorian gothic novel’s heroine would complain of, shortly before sinking ever so gracefully onto her damask fainting couch in a swoon. I dunno. Maybe that’s just me. PEM ain’t for wusses, in any event.)

So that’s my first problem with this infographic: Exercise can make your pain worse for many of us, and that’s not mentioned anywhere that I can see.

There is one sentence that acknowledges the possibility of PEM, albeit in a terribly vague, roundabout way. It’s the statement halfway down reading:

If you feel abnormally fatigued or experience more pain than usual, stop exercise until your symptoms decrease, and then gradually start exercising again.

Here, the assumption is that the PEM is itself a rarity, and that when (not if!) it goes away, you’ll be able to resume the very activity that caused it in the first place.

And I’m over here like …

And what’s more, PEM can last for an unknown length of time. Every time you get it, it’s like waiting for the other shoe to drop, for — as one blogger put it ….

Two days? Two weeks? Two months? Two years?

Studies currently suggest that there may be an immune system response behind PEM. It could well be that exercise in FM patients retards the production of growth hormone, which in turn triggers cytokines to prompt increased pain from muscular cells.

So FEM is real, and it can be as distressing – or even more so – than the primary pain caused by the underlying condition.

And, again, just to drive the point home: this is just what exercise does to many people with chronic pain.

“Tough it up and push through the pain” is therefore really crappy advice to give to someone living with chronic pain.

My Experience Exercising With Fibromyalgia and Scoliosis

The kind of exercise that I can do, for example, is nowhere near enough to ward off the detrimental effects attributable to a sedentary lifestyle, according to the medical community.

I can walk for 10 to 15 minutes.

I can do 10 minutes of yoga.

I can handle maybe 5 minutes of ballet barre exercises (plies, battements – but not grand battements – and tendus, that’s it, stick a fork in me, I’m done).

Many days, I can do one of those three things, but not the other two.

On really good days, I can handle all three – but maybe a third of the those really good days are then followed by fibromyalgia flare-ups, which put me flat on my back in bed with a heated-up rice pack for at least 24 hours, and creeping around like a frail octogenarian for 48 hours thereafter.

What am I saying, then? “Don’t exercise, ever”?

No. Of course not.

I’m saying stuff like this infographic can be really aspirational and inspiring for folks like us who have lived with chronic pain, maybe for years, and still miss the active lives we used to enjoy.

But it can also be dangerous.

Life is different post-diagnosis. It just is.

A new reality means that you cannot simply assume the old rules still apply. Rules like “exercise is good for you.”

Because for many of us, it isn’t.

On the flip side, movement has helped me reclaim some of my health, and I cannot deny this fact: Being completely still – for example, during those days when I’m cautiously nursing some painful part of me – also makes my pain worse.

If this is you – if you’re like me, if PEM is a fact of life for you – what I recommend instead of exercise is movement. (Of course, you should always talk to your doctor about this first and get her input.)

Movement is not exercise – at least not the way this infographic seems to define it. Movement is gentle. It’s the minimal amount of activity necessary to no longer qualify for the word “still.”

Get up and move every 30 minutes or so. Take an extended movement break of 10 minutes or so every hour. And when I say movement, I do not mean “aerobic movement.” Or “strenuous movement.”

I mean stand up, if you’re able to.

Walk around the house, if you can.

Walk around the yard or the neighborhood, if you’re that lucky.

Or move your arms a bit. Move your fingers. Move your feet and ankles. Lift your lower leg, straightening it out from the knee, while you’re sitting in your chair. Do that once. If that’s OK and doesn’t hurt, do it another time. Then move some other body part.

Move gently. Move cautiously. And move just a little, especially at first, especially if you haven’t been moving at all.

Do that for a week or so. See how you feel, both immediately after and the next day.

The second week, try doing just a little bit more. One more leg lift. Thirty more seconds of walking.

Is this terribly trying and frustrating? Will it just make you even more keenly aware of what you can no longer do?

Yep, and holy Christ, yes. I won’t lie to you. It sucks a lot.

I used to do 90-minute ballet classes several times a week, for Pete’s sake. Here I am barely able to manage a few minutes of baby ballet at a makeshift barre. I MEAN, C’MON.

But the alternative to moving is not-moving.

You know what else is not-moving?

Death. (Sleeping isn’t even not-moving, because as any parent who’s ever shared a bed with their kid knows, sleepers sometimes move a lot.)

I don’t know about you but I’m not ready to be not-moving. I’ll move as much as I can for as long as I can, but I know my body, and I know when to quit.

Until you get there with your new-reality body, you’ll have to work to learn just where your new limits are, and how to stop just short of them.

But please don’t look at messages like the one in this infographic and think “oh yeah, I should be able to do that.” Or “I can’t do that, therefore I’m truly pathetic.”

Use it instead as a starting point for a discussion with your doctor.

Come to terms with what your diagnosis means for your new physical reality, and then begin to explore – gently – those new borders.

How We Got Here From There

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So much has been going on in my life lately, and some of it — maybe all of it? — relates to or touches (in some way) my chronic pain experience.

Or maybe I mean the chronic pain experience touches everything else in my life, especially the stuff going on lately.

Or maybe it’s both.

Here’s what happened in my life, and then I’ll tell you what that means for this site.

What Had Happened Was …

Honestly, it feels better to me to simply bullet-point this list of change, but I am beginning to realize that this urge is probably related to my tendency to avoid the subject of my own pain.

And since that doesn’t seem entirely healthy or productive, I’m trying to work on that.

So, deep breath, and here we go.

Several weeks ago, I was notified by my landlord that we were being evicted. He had “other plans for the property.” (I suspect those plans involved another steep rent increase, which he knew I wouldn’t be able to pay.)

As a result, in the space of a few weeks, I had to find a new place to live. Initially, I focused on other places in my vicinity — in western North Carolina, that is — but it soon became clear that the rent situation locally had changed dramatically in the three years since I’d last looked. Simply put: there was nothing around I could afford.

As I was speaking with a friend on Facebook via chat messages about this, I jokingly said, “Hey, you wouldn’t want to get a place together, would you?”

My heart just about stopped when the reply came back: “Actually, yes.”

Please don’t joke with me right now. I can’t take it, I thought.

But she wasn’t joking.

So we talked for awhile longer, then again on the phone, then more and more … and within a few weeks, we were settled. We’d move in with my friend — into her apartment in upstate New York.

Not quite getting a new place together, but she had some unfinished attic space, and been planning to do something with it for awhile.

So as she later explained it to me, she thought, why not fix it up for Annie and her daughter, they can stay for awhile until Annie gets her feet back under her and figures out what to do next, and then whenever she decides to move on, I’ll have the space to use myself.

Getting Up to Our New Home

Getting up to New York from North Carolina was a problem. We had no car, and I had very little money.

Fortunately, my brother and sister in law were planning to give me use of their old car after the purchase of a new one. So that was awesome.

But it was a manual transmission (a stick shift) and I hadn’t driven any car in three years since I’d sold the last car (also a stick shift). So my brother suggested that we take the bus or train, and he volunteered to drive the car packed with our stuff up to NY.

Awesome!

And this would give my daughter time to spend a few weeks with her dad at the beach in South Carolina, and while she was there, I could stay with brother and sister in law.

More awesome!

Right?

Well. First I did some research, ultimately deciding that the bus made more sense. But then Greyhound abandoned us in Durham NC at the downtown Greyhound station at 11 PM.

You can read more about that here. It was a whole thing. Anyhoo.

We ended up taking Amtrak, thanks to another incredibly generous friend. We went from Durham up to Penn Station in New York City, 10 AM-ish to 8 PM-ish. Then we had a two-hour layover at Penn (if you’ve never been, let’s just say that it’s an experience).

Then another 2 hour train ride to Albany (Amtrak doesn’t go to the new town, sadly.) Next, at 2 AM, a cab ride to a motel, then a day and a half in the motel, then our friend and new roommate would come pick us up there and take us to our new home, about 2 hours from Albany.

Then my brother will pull into our new town with the car I will have use of and all our stuff.

Phew. But OK, right?

Yeah, no. Almost! Soooo close, as a matter of fact, but … no.

Instead, the clutch blew out on the car the minute my brother pulled off the interstate into our new town. We met him at the mechanic’s garage, and within a day it was clear: this car was dead, and the cost to fix it would exceed the cost to get something newer and in better condition.

So we got the car unloaded and carted over to the new place, brother got the car sold to a junk yard, and then we got him dropped off at the car rental place so he could pick up a car for the drive back to North Carolina.

And here we are. Carless but roomie has access to a car, and we’re in a town with pretty decent public transportation and a grocery store within walking distance. Also, because of the exorbitant rent I’d been paying and the much more reasonable rent here, I’ll be saving quite a bit of money, so I’m confident that I can get a car at some point.

What All This Has to Do With (My) Chronic Pain

Gotta admit: It’s been a struggle keeping my equanimity here lately.

So many challenges. So many unexpected problems to solve. So many people contributing to getting us here, for which I’m eternally grateful, but it also causes more stress for the stalwart “do it all myself” types like me. (I’m working on that.)

During my visit with my brother, who also has some of the same issues I do (back pain, neuropathy, etc.), he commented on my current pain level, which was admittedly high that day.

I mean, let’s face it — moving all our stuff, staying on a couch for a few weeks, planning a second move to a completely different state and all the stress that involves? That’s not exactly conducive to decreasing one’s chronic pain levels, amirite?

I made some self-deprecating comment and a joke.

He didn’t laugh. He asked me, “What are you doing about this?”

I thought, What do you mean, what am I doing?

I said, “There’s nothing to be done. I could get surgery, if I had insurance. But I don’t. So I just exist. I live with it. I try not to make it worse.”

He said, “Have you ever heard of the McKenzie Method?”

I had to struggle not to roll my eyes. Did he have any idea how many bodywork methods I’d looked into? How much physical therapy? Acupuncture? Supplements? Yoga? Massage? Chiropractic?

Of course he did, I see that now. And he was quick to add that McKenzie might not help me at all.

But he gently suggested I might want to look into it.

I think that planted the seed for me — the seed of maybe there’s more I could be doing.

After all, it’s been months – no, years, actually. YEARS — since I tried a new modality for my pain, or for anything other than temporary relief of the pain. I haven’t been working towards healing except through prayer for years.

For years. (It bears repeating.)

All that time, I’ve focused on maintaining the status quo. Keeping it from getting worse. Thinking someday, hopefully, maybe, I can get the surgery that will hopefully, maybe, reduce the pain and numbness in my feet and legs at least, if it won’t solve all my pain issues.

That was my whole focus.

I didn’t think healing was possible. Or at least, I didn’t pursue it.

But now … now, I’m not so sure.

I’m at least sure of this:

I’m no longer willing to accept that it’s not possible.

I’m no longer willing to not try to heal.

I’m no longer willing to assume the status quo is as good as I can expect, ever, for the rest of my life.

I’m not saying I’ll ever be like my brother, with his cross-country (literally!) bike trip plans and hot yoga and … oh, so much more.

But I do think it’s at least plausible that I may achieve a state of health without the pain and numbness in my legs and feet.

And that’s the one condition among all my symptoms that’s distressing me most right now.

It’s distressing because it means I am vulnerable and at risk for so many unpleasant things, like falling and breaking bones — I did just celebrate my fiftieth birthday, after all, as hard as that is for me to believe.

So I decided just now — today, this morning, a few hours ago, actually — that this is what I’m going to do.

To wit, I am going to pursue healing.

Y’know, again.

What That Means for Euston Arch

I’m not aware that I’ve ever pretended to have any answers, let alone all the answers, for every person suffering from chronic pain.

But for a time, this site was purposed towards, and published as, a lifestyle advice site for people with chronic pain.

That’s not the way it started, though.

It all started, waaaay back when, back when it was called “The Tramadol Diaries,” as a personal expression and resource clearinghouse. We had links to resources for folks who’d received one chronic pain diagnosis or another. And we had personal essays written mostly by me, or by the occasional guest blogger.

And that’s what we’re going back to. Starting now.

I’ll share mostly personal reflections on everything I’m doing to pursue my own healing, as well as the full spectrum of all we CP’d folks endure at the hands of the medical community — good, bad, and ugly.

If I find something that looks like it might be helpful, I’ll share it, of course, but for the most part, this is me, this is my experience, and this is what I think, feel, believe about my own chronic pain experience.

I’ll probably also be turning off comments here soon. I’ll explain why in a separate post later next week.

There’s one more thing to point out in connection with this new focus: the look of Euston Arch has changed pretty dramatically.

You’ve probably noticed this already. Gone is the cutesy doll header, the pink and brown and beige color scheme, the rotating box of graphics on the home page.

Instead, we’re now sporting a clean, minimalistic, monochromatic white look. It’s courtesy of the standard-with-WordPress 2015 theme. I don’t promise it’ll stay forever, or even for very long. But until I have the bandwidth and energy for a redesign, it’ll do.

So that’s where we stand. As always, I welcome feedback and inquiries – use the contact form here to get in touch with me.

Why Is It So Hard to Acknowledge Our Own Pain?

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Earlier this month, my good friend and productivity role model Téa Silvestre of Story Bistro asked me and a few other solopreneur types for our best advice for chronic pain peeps who want or need to work for themselves.

I had to think about it for over a week.

So on Friday – yesterday, as I’m writing this post – Téa’s deadline was fast approaching. With two hours left to go, I sat down with a project notebook* to brainstorm. I asked myself “If I could go back in time and advise myself when I began this journey, what would younger Annie most benefit from hearing?”

And I sat there, pen poised, brain firing, no significant fibro fog to impede my thinking, on a relatively good pain day (3 out of 10) …

And I couldn’t think of a damn thing to write.

I don’t know why answering this question was so difficult for me. I’ve been dealing with chronic pain from scoliosis and fibromyalgia for over 15 years, and have been self-employed for at least half that time. I’ve also been blogging here, or at this site’s predecessor, for most of that period of self-employment.

In fact, if you drew a Venn diagram of the areas of my life impacted by the topics raised in this question, then Téa’s question would lie right in the middle of the overlapped part:

Why is it so hard for me to write about my chronic pain experience?

Partially, I think, it’s a reluctance to identify in any way as or with my diagnoses. I am much more than my twisted spine or my constant muscle pain.

Kate over at Betty Means Business has written about her experiences as an entrepreneur with chronic pain. I found her first paragraph particularly striking:

Even though it impacts me every moment of every day, this is something I rarely share about in detail. Not because I’m ashamed of it. Mostly I’d just assumed that part of my message is about focusing on what’s possible, instead of focusing on limitations, and so I do my best to model that. But I can see that also means I could be brushing aside an important part of the story.

I can definitely relate – how about you?

It feels like I’ve been “brushing aside an important part” of my own story for awhile, actually. When others tell their own stories, I don’t feel this strange sensory mix of annoyance, frustration, and boredom.

And I don’t want to shut them up the way I want to shut me up, when I start talking/writing/thinking about my own experiences with chronic pain.

I’m pretty sure I’m not alone in this regard. After all, most of us human beings want to achieve whatever it is we want in life on the strength of our own merits. We want to be known as people, as individuals — not as diseases, not even as individuals with diseases.

We’re complex creatures, and we simply cannot be accurately boiled down to this one – albeit huge – slice of our lives.

Is that what’s going on here? Am I maybe not so much bored by my own pain as I am afraid of being typecast by it?

* A large soft-cover plain Moleskine notebook, which I habitually use to track and log my work on specific projects – I have one dedicated to all my writing focused on chronic pain.

Euston Arch: The Blogger Is (For) Now In

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Wait a second…

Didn’t there used to be something else here?

Yep. You’re not imagining things. There used to be another post in this space, announcing that Euston Arch — the site registration, the files, and possibly the content and associated social media accounts — was for sale.

The (slightly) short(er) story: I have struggled my whole life with “too many projects and not enough time/bandwidth.” Over the last year, I’ve had to come to grips with the fact that I’m getting older and it’s getting harder to bring any creative project — of which I have so, so many — to completion.

I concluded something had to go. And looking at the entirety of the landscape as objectively as I could, I had to conclude the thing to go was this site. I’d been struggling for awhile with finding something worthwhile to write about here, even as the war on drugs became the war on chronic pain patients and more and more we saw evidence that an ugly tide had turned.

I knew this. I had opinions and thoughts and feelings on all of it. Yet it was like pulling teeth for me to sit still long enough to write about it, when I had all these other projects in varying states of completion begging for my attention, too.

I didn’t want the content to go away, but I knew if I just let the site sit out there on the web, I’d inevitably feel guilty for not doing anything with it.

So I decided to put the site up for sale.

And then, something happened. Something I should probably have foreseen, since it’s happened before. Somehow, sometimes, the minute I make a decision to put aside a creative project, the next thing that happens is that I get hit with crashing waves of “YOU HAVE TO WRITE THIS!” *smack, gurgle* “AND THIS!” *smack, gasp* “AND THIS!” *smack, pant, gurgle* “AND DON’T FORGET THIS!”

Enough, already.

I could just set those waves aside, metaphorically speaking. But I know myself pretty well. I’d feel guilty about ignoring those urges to write, and I’d always wonder what could have happened if I’d only listened to them, done what they were trying to compel me to do.

So, if I’m gonna feel guilty either way, I’d rather feel guilty in the way that doesn’t leave me forever wondering what could have happened IF ONLY.

I have no idea what’s going to happen. I’m making this up as I go along, as we all do. I’ll make no promises about how many posts I’ll write or how often I’ll publish. I honestly don’t know.

The only thing I’ll promise is that I’ll continue to write and publish as I feel led to do and as other, bigger commitments allow.

The first of those waves to hit is a longform piece I’m working on for Medium. That one’s going to take a few more weeks to complete, but I’ll let you know when it’s up. (My first piece on Medium. And it’s gonna be a doozy. And I’m … really, really nervous about that.)

Second wave is a blog post for this site, which I’ll get done this week, God willing and the creek don’t rise.

After that – well, we’ll see! Stick around! Could be fun! Could be a disaster! WHO KNOWS!

Photo credit: ¯\_(ツ)_/¯ via photopin (license)

I CANNOT EVEN.

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Watch this video, if you can.

Warning: MAJOR trigger warnings for rage, high blood pressure, and accompanying symptoms due to medical personnel assuming ER patients who ask for medication for pain are criminal drug-seekers and addicts. (In short, your average visit to a new doctor or pharmacist.)

EDITED TO ADD LINK: Some folks are reporting difficulty seeing the embedded video – if you’re having trouble, try this direct link.

A friend of mine sent it to me earlier today and asked me to watch to the end. I couldn’t do it. Fifteen seconds into the actual “song” portion of this … “parody” (PLEASE, give me a break) my heart rate skyrocketed, my chest tightened, my stomach started doing the flippy-floppy thing that always happens when I have a high blood pressure episode – I couldn’t finish watching.

If I had, I’d have seen this:

You know what else kills over 40 people every day in the US? Car accidents (actually, on average 100 per day). I don’t see DMV officials being urged to mock driver’s license applicants and view them as criminals until proven otherwise.

Or this …

You know what else is a serious public health problem in our country? The under- and non-treatment of chronic pain, which is only getting worse thanks to the “abuse panic” and the “war on drugs”, with over 100 million Americans coping with chronic pain every. single. day.

And then there’s this …

Finally. Something we agree on.

And then …

[sic], but yes, YES. We agree: YOU SHOULD DO YOUR JOB WHEN YOU’RE ACTUALLY AT WORK. That’s a solid idea.

Oh but then …

“Help them”? Help them how, exactly? By creating awesome parody videos using Taylor Swift* songs to mock them mercilessly and make it super-clear to all what you REALLY think of your patients?

Get ready for the kicker, Dolls ….

That’s right. I could be wrong here, but it sure looks to me as if this video was sponsored by our government . With our tax dollars .

I am livid. I’m so livid, in fact, that the capacity for rational thought is eluding me at the moment. Except for this one thing, and this is what brought me here after months of not posting any new blog posts here:

This demands a response.

I’ll write the lyrics. But someone else is gonna have to do the heavy lifting with the video-taping and the production aspect.

Any takers? Let me know. I’m completely serious, and I’m not letting this go. And neither should you. This shit’s just gotta stop.

They may present this video as a “funny” “parody” (PLEASE!) but every single one of you out there who’s lived with chronic pain and whose treatment plan includes prescription medication – y’all KNOW this isn’t a parody at all. This is REALITY. It’s the reality we face every time we go to the doctor or the pharmacist.

And I, for one, am tired of grinning and bearing it. I’m tired of being quiet out of fear that I, too, will be branded “drug-seeking.” I’m fed up, and I am done. I AM DONE.

If you’re done, too, share this post far and wide. And if you belong to, or head up, an organization that can help make this response better, so that we can get the real story out there, PLEASE CONTACT ME.

* – just saw this in my Facebook feed. Wonder how Taylor feels about her song being used to further the agenda of people who’ve begun denying pain meds even to cancer patients given her own mother’s recent diagnosis?

There’s Nothing Common About a Cold When You Have Chronic Pain

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Chronic pain – whether it’s from fibromyalgia, RA, ME/CFS, or any other illness – ought to be enough for any lifetime.

It really, really oughtta be enough. It should entitle us all to a free pass for life from all colds, influenza, sinus infections, stomach bugs, and other manner of conventional temporary illness.

Yet, sadly, as we’ve all discovered much to our own chagrin, it obviously doesn’t, since we all still get sick from time to time.

Take now, for instance, for me.

For the last three days, I’ve been completely unable to breathe through my nose, thanks to the stuffy, compressed kind of congestion. I’ve had low-grade fever on and off, just enough to make me feel like crap (that is, on top of the usual fibro pain). And this morning, a lovely new symptom – a painfully engorged lymph node right where my lower jaw hits the neck area.

Can I just say “owie”?

We can take all the precautions in the world, but short of living inside a plastic bubble, we’re just never going to completely eliminate the risk of catching a cold or the flu.

But whereas that’s true for all of humanity, it’s also true that things like colds and the flu are even harder on those of us living with chronic pain conditions.

For me, being sick this week has been especially rough. Thanks to some unexpectedly cancelled income opportunities, I’ve had to scramble hard this month to make up the lost cash for rent, utility bills and groceries.

But at the same time, coping with a bad cold means I’ve lost the ability to focus for any significant period of time. So I constantly feel as if I’m coming unmoored and flitting around from thing to thing, or problem to problem, without being able to spend enough time in one spot to solve even one of those problems.

I think another key challenge for us in dealing with things like colds and other viral or biological infections is the way it makes us feel so inadequate to the task of coping. We’re so used to a certain level, type, and quantity of pain. Then a cold comes along, with a fever that causes additional pain, or a sinus infection which makes your face feel like it’s going to explode painfully. And there’s this whole new level of pain and discomfort.

I don’t know about you but for me, it’s like …

What the crap do I do NOW?!

How do I deal with THIS?!

WHAT FRESH HELL IS THIS?!?

This has been happening frequently for me at night, when I am trying so desperately to sleep so my body can heal, but my inability to breathe is causing me to wake frequently. On a couple of occasions this week, in the middle of the night I have hit that point feeling like I’m drowning, like I’ll never breathe again.

So, it’s a problem on many levels.

For me, the only real relief I can find to that scary “ACK-OMG” feeling is the relief I find on the yoga mat – the ability to experience something physically without living in it emotionally or mentally.

Coping in this manner requires some conscious effort at changing the running monologue in my head – consciously revising the script of self-talk from the fear-based to the objective.

Of course, you can’t jump from “I’M SUFFOCATING!” to “I’m fine.” You have to go up level by level. So it might look something like this:

I’m suffocating! I’ll never breathe again! This is going to kill me! … OK, that’s not something I can possibly know for sure right now, so how about I get up and get vertical and see if that helps … OK, it helped a little…OMG I am never going to get to sleep! And then I’ll hurt like hell tomorrow, and then … OK, maybe I’ll hurt more than usual tomorrow, but I can deal with that then. Right now, what’s the problem? I can’t breathe and I can’t sleep. OK, if I can’t sleep, then I might as well see if I can make myself more physically comfortable. Maybe another dose of Nyquil? Maybe that nasal decongestant spray? etc., etc…

Like I said, it’s a process, and one that requires significant effort on my part.

I think that level of sheer effort is why so many of us just don’t even try to challenge that tendency to catastrophize. We live there by default, and we’re unaware that all the while, we’re literally training our brain to cause us more pain.

And don’t we have enough of that to contend with?

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Lifestyle Changes to Ease Chronic Pain (Guest Post: Dr. Lynn Webster)

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Note: This is a guest post for Euston Arch by Dr. Lynn Webster.

Chronic pain is a life-altering condition, affecting every aspect of a patient’s daily routine. Its invasive nature makes adapting to life with the condition difficult for pain sufferers.

However, adjusting your lifestyle can help you find more relief and improved quality of life. After years of working with chronic pain patients in my practice, I’ve noticed that helping them make small, positive changes to their lifestyles has increased the efficacy of their treatment processes immensely.

To give you a better idea of how you can take back control of your life with chronic pain, I’ve compiled a list of the lifestyle changes I suggest to my patients. Taking time to evaluate your current lifestyle and implement each of the following changes in your daily routine will help you develop a solid base for battling your condition.

Get Moving

Developing and sticking to a comfortable and consistent exercise routine will help you build the healthy body and mind needed to fight your condition. Talk to your doctor about your current activity level and source(s) of pain to come up with a plan that is both safe and effective.

Reach Out

It’s not always comfortable to ask for help, but support is of key importance to chronic pain sufferers. Whether you need help with a task that has become difficult with your pain or could simply use a good listener, reaching out to trusted family and friends during your times of need will help you move through the pain.

Study Up

Knowing and understanding both the source and treatment options for your condition will help you play a more active role in your treatment process. Looking to reliable online sources and speaking with your physician on a regular basis will help you stay informed and aware of what your body needs for relief.

Listen to Your Doctor

Sticking to the therapy and medication schedules given to you by your physician is of utmost importance in finding optimal success throughout the treatment process. Stay on top of your schedules by keeping printed copies in a highly visible area (i.e. your mirror or fridge). This will give you the reminder you need until your treatment steps become routine.

Take Time for R&R

With all of the “should-dos” on your list, it can be hard to stop and take a moment to unwind. Whether relaxing means reading a book in a quiet place or spending time with loved ones, taking more time to do what you enjoy will not only distract you from the pain, but give your body necessary rest as well.

Treat Your Body Right

Eliminating the bad and replacing it with good can do wonders for an individual’s overall well-being. Avoiding or cutting back on substances like alcohol, tobacco and junk food and replacing them with beneficial choices like water and nutrient rich meals and snacks will help you boost your mood and offset the effects of chronic pain.

I hope that these tips will help you find optimal success in your treatment process and wish you the best of luck in your journey to chronic pain relief.

About Lynn Webster, MD

Dr. Webster is Medical Director of CRI Lifetree and current president of the Academy of Pain Medicine. He has conducted or participated in over 200 clinical studies over the course of his career as a pain physician and researcher. His research work centers on the development of safer and more effective therapies for chronic pain and addiction prevention. He is best known for developing the widely used Opioid Risk Tool (ORT) and for his public campaign to reduce overdose deaths from prescription medications. You can find more information on Dr. Webster by viewing his Health Grades profile.

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A New Year – A New Plan

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Happy New Year!

I just finished doing something I’m a little ashamed to admit I haven’t done in months.

I exercised.

Not much, mind you.

I used to work out regularly. Thrice-weekly hour-long yoga sessions, twice a week hour-long sessions at a gym on an elliptical and with the free weights, daily half-hour walks.

Before that, I was a dancer.

I say that now, and people look at me skeptically. I certainly don’t look like a dancer any more. Ahem.

But this year, I’m determined to do things differently.

I’d love to lose some weight – excess weight is bad for fibromyalgia, and it’s bad for people with degenerative disk disease, and it’s bad for people with scoliosis. And I have all three.

Plus hypertension – it’s also bad for that.

And a family history of heart disease – you get the picture.

But the weight for me is just one part of the picture.

I have this long-held belief that if I could just lose the excess weight, my pain levels would decrease dramatically.

I don’t know for sure if that’s true, but it feels true. And it’s worth trying, for many reasons (see: all the above).

So the last week or so, I’ve been hashing out some things I can do differently that might put me on a more productive path, health-wise.

The plan consists of gradually stepped-up movement plus a series of simple adjustments to my diet. NOT resolutions – a new way of being.

And I really wanted to start the new year on the right foot, so to speak.

Initially, I’m focusing just on increasing movement, in simple and relatively small ways.

While my coffee heats up in the microwave, I do 28 wall pushups.

While I’m sipping the coffee on the porch, instead of sitting down, I stand and do 15 front and back leg lifts, each leg. Or 20 side bends to each side, or 20 stomach isolation moves from belly dance.

And I do these several times a day. At least that’s the plan. (Hey, we just started.)

I’m tracking my progress on a page in my Circa agenda for the year. (If you haven’t experienced the awesomeness of Circa, allow me to introduce you.)

I’m focusing on the doing, not the results. But I do plan to measure myself with a tape measure on the first of each month, and record those in the agenda too.

The plan is to take these exercise breaks five times a day for the first two weeks. On January 15^th, I’m going to add in a fifteen-minute walk every day. On February 1^st, I’ll add in some morning yoga, about 15 minutes or so. Then every two weeks, I’ll step up one element of this three-part plan.

By increasing my effort slowly & gradually in this way, I’m hoping to avoid serious flare-ups of the fibro, and form the exercise habit.

In addition to my “guinea pig” experiment, I’m hoping this approach will lead to a marked improvement in my health, wellbeing and pain levels.

What are you doing for yourself in 2014? How can I help?
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WEGO Web Health Activist Awards Now Accepting Nominations

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Yeah, I have no idea what that trophy is in the picture.

But you can give something even better to someone worthy of a little praise: one of WEGO’s Health Activist Awards.

They’re looking for the best bloggers, Twitter users, speakers, and activists of all persuasions. You can nominate anyone you like, whether that’s a person (by name or Twitter handle), a website, or an organization.

Plus, there are a number of awards up for grabs, including Best in Show for Instagram, for YouTube, Twitter, Facebook, Blog and more.

Let’s give credit where it’s due! Who are you gonna nominate?

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Guinea Pig Reports: Turmeric & Curcumin

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Our first GP Report is here – and our first candidate in the completely unscientific, non-double-blind, un-controlled Euston Arch trial is turmeric .

The Experiment

Turmeric & curcumin.

Specifically, turmeric & curcumin capsules. These, to be precise. Turmeric Curcumin Gold from Nutrigold, 500 mg capsules, 2x daily.

Cost

At the above link (Amazon), the bottle of 120 capsules cost $26.92. At the rate I’m taking them (2x/day), that bottle will last two months, so the per-month price is roughly $13.50.

The Science

Many studies have indicated turmeric can help relieve pain symptoms:

The Doctor’s Remedy: Turmeric for Joint Pain (NYTimes)
Turmeric/curcumin fact sheet (University of Maryland Medical Center)
Turmeric & Curcumin (WebMD)

The Plan

Simply take two capsules a day with meals – one with lunch and one with dinner. In my case, that translated to roughly noon and six PM.

While you can certainly add turmeric to meals, a lot of people don’t care for the taste.

I, however, would not be one of those people.

In fact, this idea hit me after I recently treated myself to Indian food, after not having any for quite awhile. Then the next day, filling out my pain log, it suddenly occurred to me that I never had a pain flare-up after Indian food. I knew about the studies into turmeric’s effectiveness in pain treatment, so I figured it was a solid choice for our first GP report.

Still, I figured (for reasons spelled out below) that the capsules would be the safer choice here.

The Results

Believe it or not, they were pretty significant. On a completely arbitrary and subjective scale of 1 to 10 guinea pigs, where 1 guinea pig is “zero effect” and 10 is “off the charts awesome”, I’d place the turmeric/curcumin capsule regimen somewhere around 5 guinea pigs.

Our official TD-GP Reports Guinea Pigs – aren’t they adorbs?

The impact took a few weeks to show up, and oddly, I didn’t really notice the impact until I forgot to take the capsules two days running. On day #3 after that 2-day period, I had a fairly ugly flareup of the fibromyalgia symptoms.

I went back on the capsules on day #3, and haven’t missed a dose since. I also haven’t had a flare-up since.

Also, though, I’ve noticed an improvement in my other significant pain area: the swollen/spasming muscles that result from my scoliosis and degenerative disk disease.

That area (lumbar to mid back, on the left side) has also improved in terms of the constant, chronic achey pain I usually experience. I’d quantify it roughly somewhere around a 20% improvement. It still hurts, but noticeably not as often and not as intensely.

Side Effects

I honestly haven’t noticed any at all. It should be noted, though, that it can decrease clotting/increase blood flow, and that it can possibly cause nausea and intestinal distress in some folks.

Turmeric can also stain, big time – definitely get the capsules, if you want to try this at home – and may potentially irritate skin, though I didn’t experience any of that.

Bottom Line on Turmeric/Curcumin?

A big fat YEAH, baby. This one’s staying on the regimen.

What’s Up Next for the GP Reports?

Royal jelly and bee pollen – whee! Stay tuned – just started taking that one last week.

Wondering what this is? It’s the first in a series of posts I’m planning here at Euston Arch recounting my experiences with a succession of new treatment options, measures, etc. called the “Guinea Pig Reports.” You can read more about the series here.

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