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You Are Not Your Pain: An Introduction

I was both eager and skeptical to read the book You Are Not Your Pain [Amazon affiliate link], which I received a free copy of for review. The book is a self-guided, pain-focused mindfulness-based stress reduction course that includes audio tracks of guided meditations. I was excited to read the book because I’ve been searching for an inexpensive DIY guide to MBSR to recommend to readers since I took an in-person course in 2008. None of the options quite fit. Until I found You Are Not Your Pain.

Even though authors Vidyamala Burch and Danny Penman have chronic pain themselves, I was skeptical that they had the authority to really understand what it’s like to live with pain. I’m not proud to say I questioned their credibility, but I did. Reading their stories made it seem almost too easy. Like their symptoms were mild and non-disruptive to begin with, so applying mindfulness was no trouble for them. I was wrong. My misperception was a result of the authors distilling their stories so they wouldn’t overshadow the book’s content. After all, this is a guide to mindfulness, not a memoir.

I was fortunate to be able to ask Vidyamala Burch, one of the authors, the questions that arose when I read the book. Her responses were thoughtful and detailed. Instead of just printing the interview, this post is the first of a six-week series that uses her replies to explain concepts of the book. Even if you have no interest in the book, these posts contain valuable information about coping with chronic pain. The topics I (and Vidyamala) will address include:

  • This Moment: When I was my sickest, I would go to bed wondering how I would get through each day. Similarly, Vidyamala did not think she would be able to make it through the night when she was in the hospital with severe pain. She describes the thought that got her through that night and subsequent nights. And started her journey with mindfulness.
  • Primary and Secondary Suffering: A central concept of the book is that pain has two components, the physical sensation and our emotional reaction to the physical sensation. We cannot control the pain, but we can control our reaction to the pain. Before I grasped this concept, it seemed like a minor distinction that wouldn’t do much good. Now it is an essential part of my coping strategy—it’s quite possibly the one I use the most in all areas of my life.
  • Mindfulness Practice: Overcoming Discouragement: “This can’t possibly work for someone who is as sick as I am,” I thought as I gave up on my first MBSR homework three minutes into the meditation. Eight years later, the visceral memory of that first meditation is so strong that I asked Vidyamala about it. The experience was familiar to her, too.
  • Mindfulness for Non-Pain Symptoms: The book is focused on pain, but the principles can apply to other symptoms (and, really, to life well beyond illness). Vidyamala explains how she uses mindfulness to manage fatigue.
  • Beyond Mindfulness: Mindfulness-based stress reduction is a secular approach that applies the Buddhist principle of mindfulness to pain, illness, and stress. The more I learned about mindfulness, the more curious I became about Buddhism. It turns out many Buddhist practices can help with managing pain and illness (and aren’t inherently religious). Vidyamala talks about the ones that she employs regularly.

TL;DR: Read You Are Not Your Pain if you’re looking for a way to cope with any illness that causes frequent or chronic pain. Commit to doing the guided audio exercises 20 minutes a day for eight weeks for an inexpensive DIY mindfulness-based stress reduction course.

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Migraine and Chronic Pain in Teenagers

Having a chronic illness or chronic pain is life-altering and the stigma of invisible illness can be infuriating for anyone, but it can be especially difficult for teenagers. Sometimes the very people who are supposed to support and protect them — teachers, coaches, school nurses, doctors and even parents — don’t even believe them. (Sadly, many of you don’t have to imagine this scenario because you lived it.)

Psychology professor and Psychology Today blogger Nancy Darling, whose teen son has migraine, provides an insightful and touching take on migraine and chronic pain in teenagers.

Withdrawn, Irritable Teen? Is It A Migraine? points out that migraine often doesn’t look like migraine and that the associated absentmindedness, irritability and isolation can look like a normal “teenage funk.” She also explains why migraine looks so much like a kid trying to get out of going to school.

Children Who Go to School in Pain walks readers through a day when her son has a migraine. The most poignant part is “faking being well.” That’s right, despite the common accusation that the chronically ill are faking illness, many of us are actually faking being well. Whether you’re a teenager or adult, I’m betting that resonates with many of you; it certainly does me.

Please take a look at Dr. Darling’s posts. Even if you’re not a parent, the struggles she describes are important for everyone to be aware of. As a former teenager with chronic illness, I’m relieved to read about a topic that gets far too little attention.

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Opioids Under-Prescribed Due to Addiction Fears?

Fear of Addiction Means Chronic Pain Goes Untreated, according to an NPR story that aired last weekend. While there’s definitely truth to the headline, it obscures the nuances of physicians’ reluctance to prescribe opioids (a.k.a narcotics) for chronic pain in general and headache disorders specifically (particularly migraine).

Opioids were originally prescribed for short-term pain, like from surgery or an injury, or for use in end-of-life care. Chronic pain is a serious medical issue that is both under-treated and has limited treatment options, so it’s understandable that opioid painkillers filled that void, especially because opioids are the only source of relief for many people with chronic pain. Unfortunately, they began to be prescribed for long-term use before there were a lot of studies on their long-term effects. Now that research is catching up, this use is being questioned.

Beyond addiction, other potential problems for using opioids for chronic pain include opioid-induced hyperalgesia, tolerance and the systemic effects of long-term use. Opioid-induced hyperalgesia, when opioid use increases a person’s sensitivity to pain, is one concern. Tolerance — which requires taking increasingly higher doses of the medication for it to still be effective — is another. The repercussions of regular (and often increasingly higher) doses of opioids could have on the body’s systems should also be considered.

Headache disorders — and particularly migraine — have additional issues. Rebound headache (medication overuse headache) is the most widely addressed concern. In addition, the American Migraine Prevalence and Prevention study found that using opioids more than eight times a month can cause episodic migraine to transform into chronic. (Diana Lee recently reported that there may be a difference between short-acting opioids and long-acting ones and that long-acting opioids may be OK for long-term pain management for people with chronic migraine.) Headache specialists also believe opioids impair the efficacy of preventive medications.

On top of that, opioids aren’t even particularly effective for any type of head pain. In the video I shared last week, headache specialist Mark Green explained why:

“Part of the reason for that is there are fundamental differences in the chemistry of head pain compared to visceral pain. In the receptors subserving head pain, we really don’t have a lot of opioid receptors, so the upside for the use of opioids is rather low. That’s why we use, for example triptans and ergots. Those serotonin receptors are very well represented on those receptors that subserve headache.”

What do I get from all this?

  • Boiling down concerns about opioid use to a fear of patients becoming addicted is an oversimplification.
  • There are a lot of unknowns about opioid use for chronic pain. As more research is published, the less they seem like a good long-term solution.
  • Head pain is different than bodily pain and migraine may different still.
  • Chronic migraine isn’t a chronic pain disorder, nor are chronic cluster headaches. I don’t know where tension-type headache falls on the continuum, but I’m inclined to believe it’s more on the side of other types of headache disorders.
  • Using opioids can significantly alter treatment for an underlying headache disorder.
  • Mostly, I’m left with a lot of questions (and so are researchers and physicians).

I’m not anti-opioid, but all these unknowns plus the generally negative outlook of what we do know make me very, very cautious. Ideally, your headache specialist would be the prescriber, but fewer and fewer are willing to prescribe opioids (not out of fear of addiction or the DEA, but because of the ramifications for treating the condition you’re using opioids for in the first place). If your headache specialist won’t prescribe them, still be honest with them about how often you use them and at what dose — without that information, your specialist can’t treat your headache disorder properly.

Note: I’ve used words like “potentially” and “can” a lot in this post because not everyone’s the same. It’s important to be aware of the risks, but also to remember that not everyone will have all the same issues.

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Understanding Chronic Pain: An Eloquent Explanation for Healthy Folks

This letter to people without chronic pain has been floating around online for more than a decade; I’ve even shared it before. It is no less powerful, honest, and important than it was the first time I read it. I’m publishing it again, this time in honor of Migraine and Headache Awareness Month. Raising awareness is also about raising compassion, which this letter does beautifully. I only wish there were a way to thank its anonymous author.

Letter to people without chronic pain:

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand:

These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I’m not much fun to be with, but I’m still me– stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.” When you’ve got the flu, you probably feel miserable with it, but, I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard not being miserable. So, if your talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or, any of those things. Please don’t say, “Oh, you’re sounding better!” or “But, you look so healthy!” I am merely coping. I am sounding happy and trying to look “normal.” If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re paralyzed and can’t move. With this one, it gets more confusing everyday. It can be like a yo yo. I never know from day to day how I am going to feel when I wake up. In most cases, I never know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.

That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying “You did it before” or “oh I know you can do this!” If you want me to do something, ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that the “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need exercise, or do some things to “get my mind off of it” may frustrate me to tears and is not correct. If I was capable of doing some things any or all of the time, don’t you think I would?

I am working with my doctor and I am doing what I am supposed to do.

Another statement that hurts is: “You just need to push yourself more, try harder.” Chronic pain can affect the whole body or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now. It can’t be put off of forgotten just because I’m somewhere or I in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. Lord knows that isn’t true. In all likelihood if you’ve heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also has includes failure, which in and of itself can make me feel even lower. If there was something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. Its definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, its probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be “normal.” I hope you will try to understand my situation unless you have been in my shoes, but as much as possible, I am asking you to try to be understanding in general.

In many ways I depend on you — people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the store. You are my link to normalcy. You can help me to keep in touch with the parts of my life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I ask a lot from you, and I thank you for listening. It really does mean a lot.

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Migraine Ain’t Just a Headache & it Ain’t Just Pain

People with chronic illness are known to declare that they are in some way better because of that illness. That it has taught them to value every moment, cherish the good times, accept life’s curve balls with grace, become braver and stronger. (In fact, the latest Headache Disorders and Migraine Blog Carnival is all about these unexpected blessings.) I absolutely agree that chronic migraine has changed me for the better, but writing about it is difficult without descending into cliches or trivializing the monumental effort of day-to-day life.

How Chronic Pain Has Made Me Happier, a recent Lifehacker post, has some great points about the enriching lessons of chronic pain. Unfortunately, they are couched in bumbling terms that minimize the struggle and oversimplifies the relationship between psychological and physical health. It frames illness as opportunity — a characterization that always raises my hackles — and leans toward the “just think positively” self-help meme. (Keeping these points in mind, it is still absolutely worth a read.)

All these complaints are minor in comparison to the glaring reason why this article does not apply to migraine: migraine is not a pain disorder, nor is chronic migraine a chronic pain disorder. Migraine is a complex neurological condition that affects every system in the body. Migraine ain’t just a headache and it ain’t just pain.

Everything the writer talks about, all that he’s able to overcome, while not simple by any means, only represents one piece of migraine. Pain may be the most obvious, debilitating feature of migraine for most of us, but the nausea, fatigue, dizziness, mental fogginess, mood swings, and heightened sensory awareness can be just as debilitating. And that’s only a smattering of the many under-recognized symptoms of migraine.

Treating migraine as either a headache or a pain disorder perpetuates the myths that surround this illness. It also trivializes how debilitating migraine attacks are, whether acute or chronic. According to the World Health Organization, severe, continuous migraine is as disabling as quadriplegia.

Please think carefully about how you describe migraine: whether you call it a headache or head pain, a pain condition or a neurological disorder, a disease or not. These may seem like insignificant differences, but research abounds that the words we use shape the reality we see. And the reality that non-migraineurs believe.