Being okay with uncertainty

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When I first started this blog, I was angry.  I never wrote about it, because I didn’t want to bring people down, but I was sick and tired of trying to explain my health issues to the people in my life, and feeling like they didn’t believe me.

Maybe you can’t see the anger, because you aren’t me.  But when I look back and read my earlier posts, I see the it in between the lines, in the way I wrote.  How sure I wanted to be of things; how determined I was to prove that things were, in fact, the way I understood them to be.

The funny thing is that now that I’ve taken more and more science classes, my perspective has changed.  The more I know, the more there is I realize I don’t know.  And the more I’m actually okay with that.

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For example, one of the things I’ve written about from time to time is how researchers are beginning to use brain imaging to study chronic pain, and even to develop new treatments for it.  This is, of course, super promising research, and I’m really excited about it.

However, one of the first posts I wrote about it, I’ve since had to significantly edit.  That original post was about how I hoped that, someday, doctors would be able to use brain imaging to “test” people for pain hypersensitivity, and prove that they had central sensitization.  This, I imagined, could be used to validate patients’ disability claims, or prove that they weren’t faking it.

The more and more classes I’ve taken– and I’ve had some really great professors, who went into the ethics of research– I’ve come to realize why using brain imaging as some sort of test wouldn’t be ethical.  The body is too complex; our testing too imperfect, to allow it to be used to potentially deny someone treatment.  People with legitimate pain could still fall through the cracks.  That’s why these brain scans should probably only be used for research and developing treatment.

That’s just one example of how my perspective has changed– knowing that we may never have a definitive way of proving who is in pain or not.  I’m more comfortable with uncertainty now, because I’ve learned so much more.

I have a much better sense of where we stand now with scientific research and where we are going.  I’ve also made a lot of changes in terms of the people I choose to have in my life.

So from where I stand now, the idea of not being able to “prove” myself is no longer one of my biggest fears.

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Something I’m learning is that you can learn a lot about people by looking at what they choose to emphasize.

For example, I once had a roommate who’d been bullied for being overweight as a child.  Of course, as an adult, this person was obsessed with clothes and makeup, and never left the house, even to make a quick run to the store, without making sure she’d done her full beauty routine.

And maybe it was the same with me– in my anger, I needed to formulate some sort of certainty about central sensitization and chronic pain, because it gave me a sense of the stability that I was lacking.   Maybe that’s why the idea of a “test” appealed to me– it offered what I wished I could provide to the people in my own life: unequivocal proof.

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Of course, I still believe in learning about central sensitization.  No question; that is what has most empowered me.  Knowing what the problem is, and naming it: to me, that’s the first step on the road to healing.

What I’m really remarking on is the paradox: the more I know, the more I am okay with what I don’t know.

I no longer need to prove anything, so not having all the answers doesn’t scare me anymore.

 

Fighting a health issue without judgement, for the first time

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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.

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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.

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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.

“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.

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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.

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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.

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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.

 

Sunlight in the Kitchen

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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.

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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**

Inflammation, Fibromyalgia, and Deceptive Marketing Tactics

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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.

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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.  Chronic systemic 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.