Chronic Pain, Creative Writing, eating disorders, Favorites, My Story, psychology

Fighting a health issue without judgement, for the first time

IMG_2141.JPG

They say one of the worst things a blogger can do is to begin all your posts with an explanation of why it’s been so long since your last post.

Normally I’m able to stop myself from doing this, but I’m going to let myself do it this time, since it’s actually relevant to what I want to say.

The reason I haven’t been on here in so long is I had a crazy past few months dealing with the most insane dust and mold allergies.

I had been living in a super old 1700’s farmhouse that had not been well-maintained.  A good friend had been living there for years and needed a roommate, and the rent was super low.  So I moved in with him, following my return from California.

I had never really had significant allergies before, beyond suffering from pollen one or two weeks out of the year.

But this winter, it came out of nowhere.  I thought I was sick at first, and had to take antibiotics for a sinus infection, but even once that was treated, some of my symptoms never went away.

Thankfully, my primary care physician referred me to an allergist (even though I was convinced I wasn’t the kind of person who had allergies) and sure enough, I tested positive for dust and mold allergies.

By then, things had gotten so bad that I could barely sleep– I was so congested it was hard to breathe.  I’d wake up feeling like I couldn’t get enough air.  My sleep schedule got all messed up, and I started relying on things like Benadryl and Nyquil, which of course left me exhausted the next day.  And during the day, dealing with my symptoms felt like a full-time job.

In the midst of all this, I realized I had to find a new place to live– a pretty intense and financially-involved decision to make when you know you’re not in your right mind.

Somehow it worked out.  It took another month, but I finally ended up moving, and am gradually doing better (my allergy doctor said it might take a few weeks).

I’m a little upset at how much time I lost on this problem– really, I wasn’t able to be productive for much of the winter, until things finally came to a head in March.

However, if I look back, I can see that some good came out of this, in a way.

This was really the first time I experienced a health issue and pursued treatment on it without stopping to judge myself, or the way I was handling it.

***

I mentioned in a previous post that, in the past few years, I came to realize that many of the same issues that contributed to my eating disorder were also affecting the way I handled my health issues.

Specifically, in an unconscious way, I was afraid to devote too much time or effort to “fixing” something with my body, because I was afraid it would trigger the same obsession that caused me to starve myself while running 40+ miles a week, until I eventually developed compartment syndrome.

With issues such as my chronic pain, and then my SI joint issues, I only tried to fix the problem to a certain extent.  I’d go see a specialist, I’d go to PT, I’d do my exercises.  But then I wanted to stop, be a normal girl, focus on other things.

I finally identified this pattern 5 years into my SI joint problem.  I realized, you know what, this problem has completely taken over my life anyway.  It doesn’t really make sense to try to “limit” the time I spend trying to fix it, because things are so limited for me right now anyway.

So I gave myself permission to do whatever it took, and started my SI joint blog as a way to keep track of the things I researched.  And it was during my research for this blog that I first came across another patient saying constant chiropractor adjustments made her worse.  That planted the seed in my mind, and I ultimately came to realize that the same was true for me as well.

With my allergy stuff… I got right to it.  I scheduled an allergy test, and when the first office of the sprawling medical practice couldn’t fit me in for over 6 weeks, I called around until I found an opening in 2 weeks.  I made all the lifestyle changes my doctor recommended, and then some.  And then I moved.

Of course, it was a little easier to proceed without judgement from others in the context of allergies.  After all, we don’t suspect people of “making up” allergies for some kind of gain. You can’t get workers comp for it, and there aren’t any super fun drugs.

But even so, I felt that the biggest difference this time around was in my mind.

I had it in my head that I was a “normal” person, experiencing a problem, and I did what it took to get better.  I didn’t waste time on “whys” or “what ifs.”  I didn’t ask if I deserved to get better, or worry about what the doctors might think of me.  I simply had a problem, and I did what it took to find a solution.

When I first started having chronic pain at nineteen, I thought I deserved it…  I’d starved and abused my body, even though I should have known better, and that the pain and the compartment syndrome and maybe even my SI joint problems were the price I had to pay.

Now, at age 32, I never felt that way about my allergies on any level… I just saw them as a crazy fluke of biology, a random stroke of unfortunate genetic luck that was completely not my fault.

So… it’s interesting to feel this way.

IMG_2148.JPG

Does anyone out there know what I mean?

Have you ever come to realize that your own negative beliefs and fears about yourself were affecting the way you pursued treatment?

Don’t let them.  Believe in yourself– believe that you are normal, and that answers are out there.  Because they are.

Central Sensitization, Creative Writing, My Story, Pain Science

“Why are you writing about overcoming pain, when you’re still in pain?”

A frustrated family member asked me this question once, and it really stuck with me. As much as I believe in my own reasons for writing, it kind of freaked me out. What if other people are wondering the same thing?

How can I have an entire series of posts about how my life was changed by a new approach to chronic pain… and also be writing about how sometimes I’m still in pain?

The answer is that there’s no firm end point, no finish line when it comes to “overcoming” chronic pain. It’s not about finding a way to end the pain once and for all, because that may never happen.

It’s about learning to think fluidly. To accept the fact that the pain might not completely end, but to find ways to work with it, and work with yourself, to get to a place of greater understanding.

8647871313_575bdb9e94_b

Before I discovered pain neurophysiology education, I was a complete mess mentally and physically. I had pain all the time, shifting from one place in my body to another. I could never keep track of it.

I was caught in this cycle for years until I met Tim, a physical therapist who had studied pain neurophysiology education with Neil Pearson.

Tim explained to me that the pain in all of these different parts of my body could have a common cause.

The problem wasn’t in the places where it hurt. It wasn’t in my wrist, my elbows, my legs, or wherever else.

It was in my nervous system—that magical grid than ran behind the scenes, underneath everything, connecting. The underpinning of every single experience I had.  Somewhere along the line, the system had developed a glitch.

I wasn’t crazy, and my body wasn’t breaking down. There was a problem in the way my nervous system processed the information it was receiving.

Pain neurophysiology education doesn’t teach patients to view the nervous system as an enemy to be beaten back into submission. It isn’t about getting angry at the pain, or fighting the pain.

Instead, this approach helps us to remember that the nervous system is there to protect us. The nervous system isn’t trying to get us into trouble, or to make us look crazy to other people. Really, it’s our friend.

It’s just gotten confused about which types of experiences are actually dangerous to us, and now it’s warning us about just about everything, whether it’s really dangerous or not.

emas-pounder-spring-branches.jpg

In the past, I could never detach. If something hurt, I felt I had to be vigilant, and focus on every aspect of the pain. If I had injured something, I obviously didn’t want to do anything to make it worse.

This wasn’t my fault, and it wasn’t a sign of “anxiety,” as many people so helpfully suggested. I was reacting in the same way anyone does when something hurts significantly.

What made me different from other people was not my response to the fact that something was hurting– it was how often, and how easily, things seemed to hurt.

Now that I know that my nervous system can send me false information at times, I take more of a wait-and-see approach when something starts to hurt.

Even if I can identify a particular movement that caused the pain to start, I don’t necessarily jump to the conclusion that that particular movement is bad for me. Maybe my muscles are just tight. Maybe I didn’t have great posture when I did it, and if I have better posture the next time, it will be fine.

I don’t rush to do the same thing again—I don’t force my body, I don’t purposely test it. I just wait until it seems natural to try it again, and see. Feel it out.

IMG_2052

The thing is, I still have a body that went through what it went through. I still starved it, while running 40+ miles a week. I still developed compartment syndrome, and had to have surgery.  I still got really weak, in the years I waited to have the surgery, which has in turn caused other problems.

But I guarantee it would all be a lot worse if I hadn’t discovered PNE.  The symptoms don’t spread through my entire body anymore. I’m not showing up at my doctor’s every other month with a new pain in a new place.

Now, when I have a new pain, it usually fades away.

Does my wrist hurt because that door was too heavy for me—is it possible that I actually sprained it?

Thanks to PNE, I can wait and see.  I know not to assume the pain means I’m injured– but I also don’t push it, either.  Instead, I carry my things in with my other hand, and try to go about my business as usual. Usually, within five minutes,  I’ve forgotten my wrist hurt in the first place.

 

Digestive Issues, Nutrition

Sunlight in the Kitchen

Image

Here’s something you probably didn’t know about me:

As much trouble as I’ve had with chronic pain over the past ten years, I’ve had almost just as much trouble with digestive issues.

I haven’t written about those issues yet for a few reasons.  For one thing, they’re embarrassing.  Really embarrassing.  I’d much rather talk about running injuries and muscle pain.

For another, I wasn’t sure how many different topics it would make sense to talk about on one blog.

But digestive issues, such as irritable bowel syndrome, are actually pretty closely related to fibromyalgia.   From the time I’ve spend interacting with other bloggers, it seems like most people with fibro have some digestive issues.

I happen to know a little something about all of that.

*******************************************

In the past ten years, I have been through six gastroenterologists, four nutritionists, and four pelvic-floor physical therapists.

I didn’t find any answers at all until I met my fifth gastroenterologist in 2011.  Even then, what really made the difference is that I had started doing a lot of my own research about what I thought might be causing my issues, and this doctor was open-minded enough to humor me.

At that point, I finally started to figure things out.  None of my issues turned out to be terribly rare, or even hard to diagnose.

It was simply that I had fallen through the cracks– that I was a young, relatively healthy-looking woman, and that the first four doctors I saw found it easier to write my problems off as being caused by stress, rather than ordering some pretty basic testing.

The fact that I had fibromyalgia made it even more likely that these doctors would write me off, because pretty much every medical person knows that these issues are so closely connected.

But just because there are connections between fibromyalgia and irritable bowel syndrome does not mean that treating one will automatically treat the other.  And just because a patient has fibromyalgia does not mean there cannot be other causes and contributing factors to her IBS.

So I have decided to start sharing my experience with digestive issues with others.  To raise awareness about the basic things that most gastroenterologists and other health professionals already know, yet don’t always bother to investigate with their patients.  Once you know about these potential issues, and the tests that can be done to diagnose them, you can begin to take charge of your own health.

I have decided to write about these issues on a second blog, simply because I don’t want to completely overwhelm the people who are already following this one.  I plan to post a lot of recipes/cooking inspirations on the new blog, which I know might not interest every single follower here (and that’s totally ok!).

I hope you will check out my new blog, Sunlight in the Kitchen.

**Strawberries photo courtesy of Sharon Mollerus**

Fibromyalgia

Inflammation, Fibromyalgia, and Deceptive Marketing Tactics

5828225055_c0a1d45ff2_z

Ok, so I wish I could stop going on angry rants on this blog.  But, ironically, some of my rants have turned out to be among my most popular posts… so I’m going to keep going with this one.

One of the things that bothers me most about the majority of the online content regarding fibromyalgia is the idea that fibromyalgia sufferers must fight inflammation.

*****

Before I go any further, let’s talk about inflammation for a little while.  In general, I think it makes sense to break inflammation down into two categories: localized inflammation and systemic inflammation.  Localized inflammation occurs in one specific part of your body: you have a wound that’s healing, or you have tendinitis in your elbow.

Systemic inflammation, on the other hand, is a whole-body thing, and usually takes place as some sort of disease process.  For example, lupus is “an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body.

Decades ago, when researchers first began to look at fibromyalgia, they suspected that some sort of systemic inflammation might be involved.  They questioned whether fibromyalgia might be an auto-immune condition, such as lupus or rheumatoid arthritis.  They were looking for some sort of obvious physical changes in the body; looking for inflammation in the joints, and focusing on on the idea of “tender points.”

Yet none of this research really revealed any of the physical signs they were looking for.  Basically, doctors couldn’t find anything “wrong” with fibromyalgia sufferers.  For a while, doctors measured the number of “tender points” on a patient’s body, but as this 2010 American College of Rheumatology briefing asserts, the tender point test has been shown to not be a reliable means of diagnosing fibromyalgia.

As researchers began to rule out the idea of fibromyalgia being some sort of autoimmune or inflammatory condition, they began to pick up on the idea of central sensitization.   Proposed by scientist Clifford Woolf in 1983, the idea of central sensitization is that people’s nerves can be altered by an extremely painful physical experience.  The way these nerves function can change in response to this experience and leave the person with a heightened sensitivity to pain.  This heightened sensitivity persists, even after the initial injury has healed.

Now most scientists believe central sensitization to be the cause of fibromyalgia.  While there are a lot of things we don’t yet know about it, what we do know is that it is not caused by an abnormal inflammatory response, like rheumatoid arthritis or lupus.  This is why fibromyalgia sufferers have historically been dismissed by doctors—by all objective diagnostic tests, we appear normal.

The fact that so many fibromyalgia sufferers have been dismissed by doctors is what makes us so susceptible to frauds, fads, and bad information.

I can’t even count the number of times I’ve been reading an article on the Huffington Post or ABC news and seen a “Suggested Article” at the bottom screen that reads something along the lines of “Problem with inflammation? You might have Fibromyalgia.”

I’m here to tell you that no, you don’t.  Inflammation is not a symptom of fibromyalgia.

There are simple blood tests which doctors use to determine whether or not a patient has a problem with systemic inflammation.   C-reactive protein and erythrocyte sedimentation rate are two of the most basic measures of inflammation.

If you are concerned about your health, go to your doctor and ask for these blood tests.  If this is a problem that’s been going on for a long time, chances are he or she has probably already ordered them.  You can always ask for them again– I don’t remember ever having to pay some sort of huge copay for them, as they’re pretty basic– but if they come back normal, you do not have a problem with inflammation.

For the first few years after I developed chronic pain, I spent a lot of time wondering if I had a problem with inflammation, thanks mainly to the erroneous information I found in the Internet.  None of the doctors I saw ever seemed to take me seriously.  After I took an anatomy class and learned about the tests that can measure inflammation, I realized why.  I had had these blood tests performed several times a year, and the results were always normal.

This is why I get so angry about these articles and websites that just seem to prey on people’s fears.  I spent years worrying if I was on the road to developing lupus or arthritis or any number of autoimmune conditions, thanks in large part to the misinformation these people spread.

Let’s not be victims of unethical marketing tactics.  If you have a problem with chronic, persistent pain, ask your doctor for the blood tests I mentioned.  If they come back normal, you are going to be okay.  If they come back abnormal, it is time to see a specialist.  The thing to remember is that there are treatments for autoimmune and inflammatory conditions.  If your inflammatory response is so messed up that you need treatment, it will show up on a blood test.  Otherwise, thank your lucky stars and start reading up about how to work with a sensitized nervous system.

**The picture above is actually of a blood sample taken from a dog. How cool is that?  Thank you to Nottingham Vet School for putting it on Flickr.

Interesting Articles

Posts that blew me away

snow streaks

I spent much of this weekend huddled in my house, hiding from winter storm Nemo.  I have to be honest– it was kind of fun.  I secretly enjoyed the driving ban– in a weird way, it was nice to have about 24 hours where I had no choice but to stay home and relax.  Normally I push myself to get out on the weekends and prove to myself that I still have a social life, but this Friday night was different.  No one was doing anything; it was illegal to drive, and nothing was open.  So I took it as a chance to stay in and catch up on blogs I’ve been meaning to read.

I found some really great blogs/posts this weekend.  There are a few in particular that I find myself still thinking about, hours later.  Great writing transforms you; it takes your breath away and makes you forget where you actually are.  To the authors of these posts: thank you.  I really feel like I learned something.

Interestingly, all of the posts I am choosing to link to are part of a series of posts on each blog.  I didn’t want to link to all the posts in the series (thereby spamming their respective authors with a million pingbacks) so I am only linking to one post for each.  I’m sure you guys can figure out the rest :)

Here are the links, in no particular order:

Does Your Journey Seem Long: a series of posts by author Stina Morrison on her experiences with endometriosis.  Her story really resonated with me.  Click here for part one.

Fibro Feist: an ongoing series of posts by my blogging friend Sarah called “What I need you to know.”  I just read her most recent post and it completely blew me away.

While I Wait: A Journey of Recovery: a blog written by Ana Turck, a native Sarajevan who survived the Bosnian War.  I was incredibly moved by her series of posts “They Are Coming.”  By the end of Part 2 I was actually crying (another sign of good writing!)

I hope these stories resonate with you all as much as they did with me.  And again, thank you to the authors of these posts!  Your writing was truly thought-provoking.

Hope everyone had a great weekend (and that anyone else in Nemo’s path had as relaxing a time as I did!).

ruby storm 3The dog was on patrol, as you can see.

Chronic Pain, Favorites, Fibromyalgia, Pain Science

Understanding pain as an overprotective friend

grand canyon

Let’s say you’re sightseeing at the Grand Canyon.  You are with a trusted friend enjoying a scenic overlook when notice your friend is walking a little bit too close to the edge of the cliff.

“Hey, watch out!” you say.  You can see that no one else is standing that close to the edge.  Your friend keeps going.

“Hey!” you shout.  “I think you’re too close!”  Your friend still keeps going.

You start to panic.  Your pulse races.  You’re starting to get a picture, in your mind, of what it would look if your friend actually fell over the edge.  “OH MY GOD WHAT ARE YOU DOING?” you scream at the top of your lungs.

This is a metaphor that my favorite pain researcher Neil Pearson uses to explain how pain works.  Pain is like a friend that’s trying to protect you, and if you ignore it, it will get louder.

grand canyon 2

****

As I touched upon in a previous post, pain isn’t always an indicator that something is wrong in your body.   Sometimes, your nervous system causes you to feel pain as a warning.  For example, maybe you are performing some kind of motion or exercise that is going to hurt you—pain will prevent you from stretching a muscle or a joint past its normal range.  You feel pain before you have pushed the stretch too far and actually strained anything.

To come to terms with chronic pain, you must first understand that pain doesn’t necessarily mean that a part of your body is injured.  Instead, it means that your body is warning you about something, or that it wants you to change your course of action.

A lot of the pain scientists I cite on this blog offer anecdotes about how pain is not always correlated with a person’s level of injury.  This is important to understand, because it can help people with chronic pain and fibromyalgia not to fear the pain so much.  I find these stories fascinating, so I will be passing them on as much as I can without feeling like maybe I’m relying too much on someone else’s work (it’s hard, because I honestly just want everyone to know what these guys say!)

But it’s also important to understand that all these stories about how pain doesn’t mean you are necessarily injured do not mean you should ignore pain.  That is what I absolutely love about Neil Pearson’s approach.  Even though he is all about teaching people not to fear pain so much, he still says that you have to respect it.

grand canyon 3

Pain is like that overprotective friend.  Pain occurs when your nervous system has decided that something you are doing is dangerous.  This is true whether an injury has already occurred (for example, you sprained your ankle and now your body is telling you to get the heck off of it!) or whether your body thinks an injury might occur (for example, you’re pushing a stretch too far).

Regardless of whether or not a physical injury has already occurred, if you try to ignore pain and keep doing what you are doing, it will get louder.   When you’re doing something that your body thinks is dangerous, your nervous system becomes that friend screaming at you to stop getting so close to the edge of the Grand Canyon.  The more you keep going, the louder your nervous system gets because it’s panicking—the same way you would if you saw a beloved friend too close to the edge.

Of course, this doesn’t mean you have to be crippled by your pain, either.  There are basically two ends of the extreme in dealing with pain: one end is to try to be tough and completely ignore it, and the other end is to be terrified of it and let it dictate what you do and don’t do.

When I was a runner in high school, I was far too influenced by the people around me who placed an emphasis on “no pain, no gain.”  (There were a lot of things wrong with the running culture at my high school—a subject for another day).  The mindset that it was good to block out pain and keep going eventually led me to develop compartment syndrome, the injury that ended my running career, and left me unable to walk or stand up for prolonged amounts of time until I had surgery a few years later.

After developing this injury, I of course went all the way to the opposite end of the spectrum.  I blamed myself for not listening to my body, and felt as though my injury could have been preventable.  I freaked out every time something hurt, an approach that also ended up being counterproductive.  I mean, it’s good to be careful, but now that I understand that I have issues with central sensitization, I realize that not every pain is worth freaking out over.

There is instead a middle way, where you learn to respect your body’s pain without automatically assuming you are injured.  This means you respect the pain and don’t try to push through it, but you also know not to freak out because you recognize that your nervous system sometimes gives you false alarms.  It’s about being okay with the possibility that maybe you strained something and need to take it easy, while knowing that you probably didn’t.

I will be talking more about other techniques to work with your nervous system in the future, but this metaphor is really the cornerstone to understanding pain. For more information, check out Neil Pearson and his amazing online lectures that I am always trying to get people to watch!

Photo Credits (all from Flickr):

Save

Treatment Approaches

The Scam of “Muscle Energy Testing”

muscles of back

I’ve seen numerous “alternative medicine” providers perform something they call “muscle testing” or “muscle energy testing” many times as part of their sales pitch.  They tell you to put one arm out in front of you, and then push down on your arm.  Your arm sinks immediately.

Then they ask you a question, or put some kind of substance or herbal remedy in your opposite hand, and repeat the “test.”  Your arm always stays up better the second time.  The explanation the quacks will give you is that your body “knows what is best for it” and that your arm is somehow “in tune with the universe” enough to know that what you’re holding in your opposite hand will help you.

As this video points out, none of this is true.  The reason your arm does a better job of resisting the force the second time around is simply because your body has learned what to expect.  As John Duffy, the physical therapist in the video, points out, this represents “simple motor learning.”  In the video, he uses his “magic pen” as a joke to represent the “treatments” that some unethical “alternative health” providers con people into taking using this test.

This video was originally posted on the Phoenix Rehabilitation and Health Services, Inc. Facebook page.  I am including the link to view it on the blog Forward Thinking PT because that is where I originally viewed it, and it seemed to come out in a higher quality there.  (Although I have to admit that this may have more to do with the fact that my computer is ancient than anything else…).

Thanks to EUSKALANATO on Flickr for making the above photo available.

Chronic Pain, Favorites, Interesting Articles, Pain Science

Violins and enhanced sensory maps

violin player

I recently learned about a fascinating study that I had to share with you all.  Researchers took two groups of people– professional violinists and regular, everyday people off the street– and pricked everyone’s index finger with a pin.  The violinists reported feeling much more pain than the non-violinists, even though everyone’s finger was pricked in the exact same way.

I thought this was so interesting.  This article on Optimum Sports Performance sums it up quite well (scroll down to the “Influence Psychology” section.  The author writes, “The enhanced sensory map and awareness of their hands that a professional violinist has makes them hypervigilant to anything that may be remotely threatening.”

I love this phrase “enhanced sensory map.”  They say practice makes perfect– well, all those hours and hours of practicing has given that violinist a very well-developed communication pathway between hand, spinal cord, and brain.  He or she is simply better at sensing what is going on in his or her hands.  Most of the time, that’s a good thing– it’s where the artistry comes from– but it’s not good when something is going wrong in that part of the body.

We are conditioned to think that “better” means tougher.  Practice is supposed to make us “stronger.”  We revere athletes for their ability to keep going despite pain.  We think only beginners and those who are not strong would let pain stop them.

In reality, it’s the “best” violinists who have the most awareness of their hands.  The more time a violinist has spent practicing, the better a musician he or she probably is- and the more sensitive he or she is going to be to an injury to the fingers.

I think that’s the reason I loved this study so much.  I’m so tired of the notion that pain somehow means you are weak, or a novice.  In the case of this study, it’s the seasoned individuals who have truly mastered a discipline who are the most likely to react strongly to the pain.

*****

This ability of our nervous systems to become better at the things we practice allows us to develop talent and mastery.  It also, unfortunately, allows us the ability to develop chronic pain.

When you go through a prolonged, painful physical event, it’s as if you’re giving your nervous system the chance to “practice” sending and receiving pain signals.  It responds by getting “better” at feeling pain.  This is what causes chronic pain– you end up feeling pain more easily, and have a lower pain threshold, than you did before.

I would like people to stop thinking of chronic pain as something that happens to those who are “lesser,” or as something that is outside of the realm of normal human experience.  Chronic pain is simply the other side of the coin that talent and mastery are on.

violin on side cropped

**I really hate the fact that I couldn’t provide an official citation for this study, but no matter how hard I looked, I couldn’t find one.  I believe the study was headed by David Butler and Lorimer Moseley, but I don’t know the year, or which institution they were affiliated with at the time.  They reference it in their book Explain Pain, as well as in various interviews I’ve watched online.  Sorry… I hate when people don’t cite things.  If you know anything more about where to find this study, please don’t hesitate to let me know!

Uncategorized

Don’t miss my interview on Fibro Feist!

For anyone who doesn’t already know about Fibro Feist, it is one of my favorite blogs.

I was so flattered when Sarah, its creator, asked if she could interview me.  Of course I said yes.  Check it out!

For a little bit more of a peek into my life, here are my Saturday morning reading companions:

Photo01170922_1