I play tennis, but I’m no Rafa Nadal! I cook spaghetti, but I’m no Gordon Ramsay! And while I write about pain, I’m no Andrew Levy, author of A Brain Wider than the Sky, a memoir of his 20+ years of experiences with migraines.

It is a spellbinding, creative work. His power as a writer lets even those of us without migraines into the private experience of severe headaches.

September: there is no line between the migraine and worrying about the migraine as one lies awake at five in the morning. There is no difference between the first pinpricks of aura and the first gray rays of dawn, either, since one looks like the other, and since the latter seems to cause the former.

The pain will come if it wants to come. I can feel the shuffling under my brow, the blood and the nerves meditating, a little rush, a little constriction. It almost feels as if they’re considering whether to make a commitment.

It starts from a point somewhere and pulsates, enlarges. By the third or fourth throb, a new pain appears, something after the throbs, like the afterimage on a television, a glow that grows fainter, until the next pulsation renews it. There’s a density now, a consistency. I get up, and while the rest of my body feels normal, my head feels as if it is shedding pieces as it rises, like the trail of a comet.

Levy also relates the impact to himself and his family of his chronic disability. His preschool son often scoped out the scene each morning to see if the “interloper” was present. “Aedan has understood that he had to negotiate with the headache, as if it were a third party.”

Levy explores the writings of other migraineurs – Freud, Virginia Woolf, Nietzsche – and analyzes the relation between migraine and creativity. He relates his own dance with treatment, and avoiding it. He also summarizes newer theories about the causes of migraine, and what’s on the horizon for remedies.

My favorite parts of the book were Levy’s descriptions of his own experiences – breathtakingly vivid and fresh:

The beep of the microwave oven as it is tapped, 3, 2, 1, start, producing a corresponding stab above the left eye, a gentle one, tap, tap, tap, tap, each a fraction of a second after the corresponding microwave beep, the way that thunder just follows a near lightning strike.

Some descriptions were funny, “And headaches: I gathered a collection of small ones, the way other people keep figurines.”

A Brain Wider than the Sky is a must-read for anyone with migraines or any pain condition. But I think any reader who likes inspired writing will love this book. Levy’s auras are at times, “a transporting sensation of awe, of joy, of clarity.” These also well describe his book!

It’s a significant challenge to deal with a lasting illness. You might not feel well, some or even most of the time. There’s uncertainty about treatments and the prognosis. You might not be able to participate in the activities you once enjoyed. Yet sometimes the hardest part of chronic illness is its effect on your family, loved ones and friends. How do you help them cope? How do you help them to help you?

“Wheelchair Ice Skating”

While chronic illness strikes young and old, women are more likely to affected by many diseases and disorders. Irritable bowel syndrome, fibromyalgia, multiple sclerosis, and depression are just a few, where women bear the most burden.

What suggestions are there to help your family cope?

1.Be direct with your family about what’s going on
Be willing to discuss your illness and limitations, but don’t dwell on your illness. You are more than your illness. Kids, in particular, benefit from an age-appropriate, honest discussion of what the illness is and what it means for them. Invite your spouse or partner to come with you to doctors appointments, so that his/her understanding can grow.

2. Give your family time to adjust
Families need to adjust to living with your chronic illness, just like you do. Give them time and support. Be patient. Also, their learning to cope with your illness is a process, not once and they’ve got it. Assume that your family is doing the best they can to adjust, even if they’re far from perfect. Blaming or criticizing isn’t helpful. Continuing to work on the issue is.

3. Give helpful guidance
Family and friends often wonder how they can help you, so offer suggestions. While it would be nice if everyone in our lives were perfectly supportive, that’s not the case. So feel free to help people to help you. Explaining what’ll be helpful to you will point people in the right direction. They can feel useful and you can get some much-needed assistance. You might use phrases like, Thanks so much for your concern about my fatigue. I know you’ve commented that I’m not able to do as much as before, and you’ve kindly offered help. Would it be possible for you to help me wash the floor, or would it be easier for you to help with grocery shopping. Or, I’d love to go to lunch with you. However, my pain is unpredictable. Will it be a problem if I have to cancel at the last moment, or would you prefer I call you when I’m having a good day, and we go spur-of-the-moment? Enlisting someone who gets it to lead the way with other family members and friends is another option.

4. When to get help for your family
When family members have a hard time adjusting, have a heart-to-heart talk, (or more than one, if needed). Encourage them to take care of themselves. Find ways for them to help you. Sometimes partners puts their lives on hold. In this case, say that you prefer them to go to events anyway when you’re not able to. Or, be thankful that they’re willing to stay home and keep you company. You might also try to go with your family to events, even if you’re only able to go very briefly, so all of you can enjoy getting out.

Sometimes spouses or kids express anger and resentment about your illness or its effect on them. Understand this is natural, but help them direct their dissatisfaction towards the illness, not you. Focus on what you can do, rather than your limitations. Sometimes support groups or professional help for families can be of great benefit.  Your doctor should be able to suggest resources.

Thanks to Jen Rossey for the photo from Flickr.

To celebrate the release of her new book, Yoga for Pain Relief: Simple Practices to Calm Your Mind and Heal Your Chronic Pain, the author, Kelly McGonigal, PhD, is sharing a guest article today about gratitude for your body – even if your body’s in pain!

Body Gratitude

When was the last time you felt gratitude for your body?

When your body seems unpredictable or unreliable, it’s natural to feel abandoned or betrayed by your body. You may even start to feel separate from your body – like the true you is trying to enjoy life, but your body keeps getting in the way. Maybe it’s a specific part of your body that you start to dis-indentify with. There’s the true you, and then there’s this back or this knee or this headache that insists on hijacking your experience of life. Many people with chronic pain start to view their body as a prison and fantasize about escaping it.

For all these reasons, the phrase body gratitude can seem puzzling, even laughable, to many people with chronic pain. Gratitude for what?

You can start with the simple fact that this body is your companion on this life’s journey. It deserves to be recognized and appreciated for how it has carried you to this moment and allowed you to experience everything leading up to this moment.

Accepting your body exactly as it is will make every step toward healing easier. It’ll also go a long way in making the present moment, even with pain, more comfortable. The desire to be free of pain and suffering doesn’t require rejecting your body. You can’t walk away from your relationship with your body, no matter how much you feel betrayed by it or want to reject it. As advanced as modern medicine is, it hasn’t yet figured out how to trade in a body you no longer want for a new one.

The following gratitude practice is an opportunity to reflect on how your body has supported you. Your body isn’t separate from your courage, your strength, or your journey through life. It’s your companion, your home, and the instrument through which your life is expressed. Whatever personal strengths and experiences you’re grateful for, you can use to heal your relationship with your body.

Body Gratitude Practice Instructions

Summary: Reflect on different parts of your body with gratitude and appreciation.

Practice:

• Anytime to repair your relationship with your body.
• When you’re feeling discouraged by pain or illness, or critical about your body, to consciously choose friendliness toward your body.
• After a medical appointment, to remind you that your body is more than its symptoms or diagnoses.

A full practice will take five to ten minutes, but you can practice the essence of this reflection anytime by simply reminding yourself of one reason you’re grateful to your body.

To begin this practice, bring yourself into any supported position, seated or lying down.

Take a moment to feel your whole body, including any sensations of discomfort or pain. Then let your attention rest on how it feels to breathe for a few moments.

Now, one by one, reflect on different parts of your body with gratitude and appreciation. Ask yourself, How has this part of my body supported me in life? How has it allowed me to engage in life? Start with an area of the body that feels comfortable in this moment and eventually work your way around the body to an area that typically experiences pain.

Some areas to consider are (but you’re not limited to): feet, legs, hips, belly, back , chest, heart, lungs, shoulders, arms, hands, throat, face, and the sense organs (mouth, nose, eyes, ears).

Your answers may be literal or symbolic. For example, the heart literally fuels the entire body, moving oxygen to every cell in the body. In this way, the heart supports every action you’ve ever taken. You might thank your heart for giving the opportunity to experience each moment of your life. Symbolically, the heart sings with joy, expands with love, and pounds with excitement. You might feel gratitude to the heart for allowing you to experience each of these emotions. Literally, your feet and legs help you stand and move through life. Symbolically, you might reflect on the times you’ve stood up for what you believed in or on how far you’ve come in life.

Trust whatever comes up, even if it seems silly or sentimental. If nothing comes to mind immediately, try focusing on today. What has this area of your body done today? Did it help you prepare and enjoy a meal? turn the pages of a book? smile and kiss your dog? Even if today has been so difficult that you’ve been unable to do much of anything, you’re alive. Can you focus on gratitude for your lungs, your heart, and every system of the body that’s supporting you right now? Can you feel gratitude for how hard your body is working to support you and give you the opportunity to experience this moment?

Sometimes this meditation brings up sadness along with gratitude, especially if you find yourself thinking about things that your body no longer can do with ease. You may also find yourself feeling critical of some part of your body. Let these emotions and thoughts come and go without grasping on to them or rejecting them. Even as they arise out of habit, you can choose to return to the gratitude reflection.

Finish this practice by bringing your awareness back to your breath. Place your hands somewhere on the body where you can feel the movement of your breath. Repeat to yourself, Thank you for this breath. Thank you for this moment.

Kelly is a yoga teacher and health psychologist at Stanford University and the Editor in Chief of the International Journal of Yoga Therapy. She is also a former chronic pain sufferer. Many thanks to Kelly for a wonderful exercise.

Dr. David Biro is a physician, has a PhD in English literature from Oxford, and has experienced severe pain and illness himself. Drawing on this unique collection of experiences, he has written an interesting book, The Language of Pain.

When we’re in pain, “there’s nothing but the pain.” Our world can shrink and we focus internally into our bodies. When we try to share our experience of pain, we’re often at a loss because language doesn’t do justice to our very difficult experience. We can’t really communicate what it’s like.

As well, our family and friends have a hard time understanding how bad it can be when we say, “the pain is bad.” There’s a disconnect between exactly what we experience and the language available to us. This can result in our feeling isolated and misunderstood, and family and friends feeling left out, helpless, or questioning our levels of pain.

Pain severs our engagement with the world and thrusts us inward. Naturally, we try to communicate our feelings, but the language runs dry… In pain, we are alone.

Biro explores what it is about our experience of pain that’s unique – different from, let’s say, other physical experiences such as seeing a bird fly or tasting an orange. He uses examples of both physical and mental pain from literature and touches on philosophical ideas about pain.

One way we can more successfully and accurately communicate our pain experience is to use metaphor. Biro states that we often use metaphor in areas we don’t completely understand such as religion and science. Think about the difference between saying, “my pain is bad” or “my pain is 9 out of 10,” and the novelist Reynolds Price’s description of his cancer pain:

…a white-hot branding iron in the shape of the capital letter “I” held against my upper spine from the hairline downward some ten or twelve inches and unrelenting.

The writer Guy de Maupassant describes cold as:

Sharper, more penetrating still than the year before, the cold made her suffer, continually… icy puffs seemed to slip down her back and to penetrate between the flesh and her underclothing…. Innumerable currents of air appeared to have taken up their abode in the apartment, living, crafty currents of air as cruel as enemies. …they were incessantly buffeting, sometimes on the face, sometimes on the neck, with their treacherous, frozen breath.

Metaphors can help us more clearly communicate what our expereince is like, and others can get a better sense of what pain feels like to us. Biro goes on to explore several ways that metaphors can be more useful and accurate than simply saying we’re in pain. Biro draws on cutting-edge science when me writes about mirror neurons – how certain cells in our brains are programmed to watch others. He also proposes using metaphors or imagery to help ourselves imagine healing.

Overall, the book is weighted more heavily on the literature side, with some mentions of philosophy. It’s goal isn’t to be a self-help book for coping with pain. Rather, The Language of Pain would be of interest to those who would enjoy a literary exploration of the language of pain.

How many more tests, procedures and medications should I try? Should I try to work despite my chronic pain? How can I make progress towards accepting my situation?

For those of us with pain, these type of questions can be puzzling and cause distress. A new book, The Wisdom to Know the Difference, looks at how we figure out what’s right for us to do.

In this book, Flanagan explores the Serenity Prayer:

God grant me the serenity to accept the things I cannot change
Courage to change the things I can change,
And the wisdom to know the difference.

From a spiritual perspective, she looks at what clues we can use to figure out what we should change in our lives and where we should instead focus on acceptance. There is much wisdom in the book. It’s full of examples of real people working to discern how they are meant to lead their lives.

While not specifically about pain or medical illness, the book is helpful to think about where you are in your life and if that’s where you’re meant to be. It offers guidance to help get you on the track you’re called to follow. I think it would be most helpful for patients with chronic pain in several ways:

• in what ways is acceptance called for in my situation?
• how can my experience of pain fit into my life, rather than define my life?
• what are the life lessons I’m learning from my situation?
• how can I grow because of this pain? despite this pain?

Chronic pain is often a life-changing situation, and this book offers wisdom to learn how to cope with such a difficult circumstance. The Wisdom to Know the Difference can be useful to integrate your experience of pain into your life, and move forward with living.

What can you do if you have pain in a part of your body that is no longer there – in other words, phantom pain? Unfortunately, phantom sensations are fairly common after amputation or trauma, but previously, treatment was not very effective.

Ramachandran, a neuroscientist at UCSD, made a breakthrough by suggesting that patients “trick” their brains into thinking they are exercising the missing body part. He did this by using a mirror to have patients look at a reflection of the normal body part to make it seem like the phantom limb was still there and moving. It worked to decrease unpleasant sensations and pain!

A new study by Ugler expands on this work and shows that phantom exercises help decrease pain in patients with traumatic amputations and phantom limb pain. Although a small study, the researchers showed that “exercising” the phantom limb results in better pain relief than just general exercise.

Ugler had patients do the same movement with both their intact limb and the amputated area. Let’s say someone had his left arm amputated and had phantom pain in his left hand. The patient would move his right hand, and imagine moving his left (amputated) hand in the same ways. It was found that this would decrease pain.

Ugler hypothesized that several factors may be helping, including:

• exercise and movement of the remaining portion of the limb
• visually watching normal movement of the opposite (intact) limb
• seeing and using a prosthetic limb may visually give normalizing signals to the brain
• a relaxation effect following movement of the amputated limb

The theory behind this type of treatment, as well as mirror therapy, is that the problem is primarily in the brain, not the site where the pain is felt. By re-training the brain, the brain error is reduced, and the pain decreases. It’s encouraging that further work in this exciting area of treatment is occurring!

The full study is in the Journal of Rehabilitation Medicine, June 2009, Volume 41, pages 582-584.

A colleague Al Lee recently sent me a copy of his new book Perfect Breathing. What a great book! When I heard that Perfect Breathing was coming out, I wondered what about breathing could possibly fill a whole book. I was afraid it was going to be about 20 pages, in, let’s say, 100 point font. I was wrong!

Perfect Breathing is the perfect combination of education, exercises, and stories. Its first section reviews why breath is important, how breath relates to body, emotional and spiritual health, and provides a series of exercises to help you connect with your breathing. The next sections look at how breath can decrease stress, promote healing, improve performance, and help you control emotions like anger.

For readers with pain, here’s an example of an exercise which can quiet pain, called “Waterfall Breathing”:

With each inhale, imagine that your abdomen is filling like a pitcher with cold clear water. Hold it for just a moment and as you exhale, release it and let it flow right to the center of the pain. Picture the fire that represents your pain and with each exhale imagine that the fire is becoming weaker and fainter as it is extinguished by the water.

There are several wonderful chapters on the connection between breathing and spiritual practices, meditation, and finally death and dying.

The book is clearly written, well-researched and enjoyable to read. Al Lee and his co-author Don Campbell are clearly well-versed in the topic, and beautifully share their expertise. The breathing exercises are easy to follow, inviting you into the book and into the practice of breathing. I’d strongly recommend Perfect Breathing to all who are interested in meditation, improving health, the study of breath, the mind-body connection, and spirituality. A must-read!

“The universe provides nourishment, and breathing is our way of absorbing it.”  ~ Heiner Freuhauf

A reader Barbara asks why new treatments such as graded motor imagery and mirror therapy aren’t more widely used. She writes:

Are you, I mean all these docs, saying that chronic pain can be cured by these treatments? By cured , I mean stopping the constant pain and returning function. If this is true and you’re talking about treatments that can’t harm, why aren’t many, many pain doctors, orthopedists and neurologists prescribing these? I understand that drug companies would be against it, but why haven’t we seen these treatments adopted by many, many doctors?

“Slipping Through the Cracks”

I’ve always believed that when a cure or very effective treatment for RSD and/or chronic pain is found, it would spread throughout the medical and pain community very quickly. Theses studies have been going on for 4 or 5 years, and yet I don’t know anyone who’s tried them. Are people being cured and does the improvement continue? Are you seeing placebo-type reactions? Are people looking better, but then having increased levels of pain?

The theory makes sense and neatly ties everything into a packet, but it also leaves the cure in the hands of patients. I do worry about what insurance companies will do with this theory – deny other medicine and treatment besides these to people who’re suffering. This is very confusing for those who either give or seek treatment, but want to stay away from anything invasive. Maybe we should all try these treatments and see what they could do for us. That is what I intend to do, and hopefully, I’ll be reporting a cure or at least help in my battles with pain.

Barbara’s points are very important!

First to answer, Do these treatments work? The short answer is a qualified yes, they work. They work to decrease pain or eliminate pain – in some people, in some conditions. Some people are helped more than others, although we don’t yet understand why. Some people get permanent improvement, some need booster sessions.

I believe that the biggest reason why the treatments aren’t more well-known and used more often is that these types of treatments fall outside of many doctors’ areas of expertise. They’ve “slipped between the cracks.” It’s not what doctors like neurologists, anesthesiologists, rheumatologists, orthopedists, or psychiatrists are accustomed to doing. It isn’t medication, it isn’t an injection, etc.

I believe that, while there has been some research, it hasn’t been a lot compared to, let’s say, medication. I’ve seen only approx 6-10 articles in major pain research journals in the last 5 years or so. And that was really because I thought these treatments were innovative and showed a lot of promise, so I searched them out. Barbara is right that it’s really not well known at all.

I wouldn’t be worried about denial of care.  (Unfortunately) nothing in pain medicine works for all, so this is one tool of many in your toolbox for relief and recovery.

It’s also not something that you do by yourself initially. I believe it’s best to have someone experienced in these treatments guide you in using them.

Finally, I do believe that many more people could benefit from them. I hope that by reading about them here, people will ask their doctors, and seek out PTs or others practitioners who use them. And organizations such as RSDSA are writing about them in newsletters and sponsoring conferences for practitioners to learn about them.

Thanks to Urban Eyes for the photo at Flickr.

I just finished reading Lost Souls, by Niles Elliot Goldstein (author of God at the Edge). In Lost Souls, Goldstein looks at what happens when people are faced with big challenges. I believe having chronic pain is one such BIG challenge!

Goldstein introduces several phases we might go through (though not necessarily in this specific order):

1. Disorientation
In this stage, a challenge throws you off course. You become “confused, disoriented. A jumble of questions crammed my brain… Who am I? What am I doing? Where am I going?”

2. Panic
Difficult situations can lead to “fear… where confusion and the loss of confidence and stability overwhelm, even cripple, the human soul.” He describes panic as one of the most alarming and uncomfortable stages. “We are starting to recognize the depth and scope of our confusion.”

“While plunging us into a world of ambiguity and pain, panic teaches us that as human beings we have no alternative but to live.” This reminds me of the work I do with patients, finding ways to live fully despite pain.

3. Loneliness
Pain is a feeling only you can feel. No one else can feel the pain you feel. This can lead to a sense that no one understands. Solitude, however, can play a “powerful role… in our inner development.”

4. Yearning
I’d guess almost all of us have yearned – really, really hoped for – an end to the pain. We want to go back to “before.” Before the pain started, before it changed our lives.

5. Anger
“When we have grown weary of our journey and frustrated with the [negative] possibilities that are before us, the result can be anger.”

“Anger, even when appropriate, should never be more than a middle step, a way station on our pilgrimage. When it becomes an end in itself [when you become stuck in anger]… you remain lost. Those who refuse to give in to it, who resolve with all their hearts and souls to move forward despite their own difficulties, are the courageous ones who gain a glimpse of the horizon ahead.”

And this decision to move ahead creates possibilities:

6. Determination
“After having confronted (and hopefully worked through) our feelings of loneliness, pain, and rage at being lost, we can arrive at a point where we resolve to break free of the forces that are holding us back.” I think determination to live fully is a better approach than a determination to be pain-free. It allows us to move on and live, rather than become more and more focused on pain.

7. Surrender
“When something bad occurs in life that you can’t do anything about, you are given a choice – you can react angrily, or you can accept it and keep your eyes on your goals and on what is really important to you.”

“More important than self-reliance is a capacity for hope, as well as the ability not to give up but to give over.”

8. Emergence
“Accepting our limitations and giving ourselves over to uncertainty seem to be the last steps in our attempts to make it out of the wilderness. But what happens when we do? Where do we emerge?” First, it doesn’t happen once and end. Goldstein believes these stages continue to occur over and over, that working towards acceptance is an ongoing journey. “Human life is punctuated by semicolons, not periods; it is an ongoing, staggered process of fits and starts.” Goldstein quotes from T. S. Eliot:

What we call the beginning is often the end
And to make an end is to make a beginning.
The end is where we start from.

What suggestions for coping does Goldstein offer?

1. Staying in the present
“The way we stay rooted in the present, the way we keep from losing ourselves in the gravity of awareness, is to simply let it all go.”

2. An end result of inner transformation and spiritual growth
Difficult experiences don’t have to be damaging, but can lead to person growth.

3. Focus on what is important
In times of distress, everything but the most essential can fall away. Being focused on what is most important to us can be a blessing.

4. Reliance on others
Pain can be humbling in that you may need to rely on others as never before. Being the person helped, rather than the helper, can be humbling. Many with pain also note they feel more compassion towards others.

5. Accept the struggle
“We can progress from being lost at one stage in our lives to finding hope and renewal at another. We can evolve – though that evolution involves struggle.”

“There is a lot we can learn from our bewilderment, but in order to learn from it we must first acknowledge it, even embrace it.”

A great summary article was published recently about CRPS, a pain condition with symptoms of:

• burning pain
• sensitivity to touch
• pain in response to non-painful stimuli
• weakness, tremor and muscle spasms
• changes in temperature and increased sweating

If pain is felt in your body, why is it thought to be a problem in your brain?

In CRPS (and very possibly other pain conditions), changes occur in your brain to cause your “body map” to become distorted. What does this mean? In your brain, there’s a representation of your body. Places that are sensitive – for example, your fingers – have a big representation. Places that aren’t sensitive – let’s say, your back – have a small representation. In CRPS, this “body map” becomes distorted in the areas of pain. It also seems that the more distorted your body map becomes, the more pain you experience.

This distorted body map is responsible for symptoms such as:

• errors in noticing where you’re being touched
• errors in how big your body parts feels
• errors in movement
• touch in 1 area causing feelings in another

What this new understanding of pain provides for us is good news. Because we now better know where the problem is, so we’ve developed new treatments for CRPS. Mirror therapy and motor imagery programs are 2 such treatments. These seem to work by reversing the changes that occur in your brain in CRPS.

The original article is in press in The European Journal of Pain, titled Cortical Changes in Complex Regional Pain Syndrome (CRPS), by Swart, Stins, and Beek.