Fibromyalgia and Chronic Fatigue Syndrome (CFS) are 2 disorders for which there are lots of unknowns – including major areas such as causes and treatments. Reviving the Broken Marionette provides a great deal of solid information about medication treatment for these conditions.

The author, Maija Haavisto, is a Finnish medical writer who developed an illness in 2000 that was finally diagnosed as CFS in 2002. Because of lack of information about these disorders in her own country, Maija hunted for information and developed an expertise that she used to help herself. And thankfully she was able and willing to compile what she learned about medication treatments into a book to share with others.

The book reviews a different class of medication in each chapter, such as stimulants, sleep aids, psychiatric drugs, and pain relievers. The presentation of medications is thorough, including:

• scientific information (e.g. how long a medication lasts)
• side effects
• concerns about medication classes (e.g. dependence on sleep medications)
• cost and availability by country is sometimes included

There are several strengths to the book, the first being that the medication information appears solid and well-researched. Second, it includes some less-used medications (e.g. antibiotics for CFS), which can educate patients about medication options that even their physicians might not be aware of. Third, there is a chapter that covers experimental therapies. The glossary and index are useful.

What could add to the helpfulness of the book is some guidance about putting this knowledge to work. The book is basically a thorough discussion of different medication classes – and what the book does, it does very well. However, it might review in what order to try the medications, or what combinations are particularly useful. As well, patient examples would bring the material to life, perhaps with stories presenting real patients’ symptoms, and what worked or didn’t work.

I commend Maija for undertaking this project. It’s a useful resource for patients confronted with an unwieldy number of medication treatment options. It’s also a great example of making lemonade when life hands you lemons. Maija is a role-model for seeking knowledge and sharing it. Lastly the book shows that improvement is possible and hope is justified. She writes:

I am not cured by any means, but I got my life back, my brain back, and my illness seems to have halted its progressive course. If there is a moral to this story, it is about hope. Never give up hope. Medicine can do amazing things. We are broken, but not beyond repair.

Thank you, Maija, for sharing that message!

Two of the most interesting new treatments for chronic pain are graded motor imagery and mirror therapy. A related experimental treatment is called “tactile discrimination.”

Chronic pain creates changes in your brain. We think that these brain changes cause other functions to become impaired as well, for example, right-side and left-side discrimination. Right-side and left-side discrimination is simply knowing your left side from your right side. If you have chronic pain in your right hand, your brain will have a harder time identifying right hands. Re-train the brain to again be able to discriminate right versus left, and pain can decrease.

We are finding out that chronic pain also creates an impairment in “tactile discrimination,” which is simply your brain figuring out what is touching your body, without you looking with your eyes. Here’s an example: While you look the other way, I can touch your arm with, let’s say, the point of a pencil or an eraser. Your brain should be able to figure out which is which – the pencil point is pointy and the eraser would feel softer. However, in chronic pain, this ability becomes impaired in the area you have pain. For example, patients with back pain have a harder time figuring out if they’re being touched by that pointy pencil or the soft eraser on their back.

Research is looking to see if re-training patients to again discriminate touch can help decrease their pain. In other words, does this type of re-training work the same as re-training to figure out right and left.

One of my favorite researchers, Lorimer Moseley, recently published a small trial looking at this question. 13 patients with complex regional pain syndrome (CRPS) of one limb had tactile discrimination for 2 weeks. The control group were simply touched, without being asked to figure out what the touch was. Thus this tested if just touch or actual discriminating what the touch is results in any change in pain.

The results: There was no change in pain or being able to discriminate after simply being touched. But, pain and touch discrimination were better after practicing touch discrimination. And the improvements still continued at a 3-month follow-up.

This is very exciting work! I have been using this type of treatment with some of my patients, and look forward to more studies coming out. Several national pain associations are trying to spread the word about these treatments and train clinicians in using them. Knowledge is power!

The original article is Tactile discrimination, but not tactile stimulation alone, reduces chronic limb pain, Pain 2008, Vol 137, Pages 600-608.

Pain + Work = ???

The combination can go well, like a burger with fries. You may be able to accomplish great things despite pain, and work can be a focus away from discomfort. Or it can feel like trying to whip up a 10-course gourmet dinner in 5 minutes with your eyes closed. But what if you had a short-order chef helping with that burger, or Julia Child behind you all the way? Well, support, advice and wisdom is here for you on the subject of work and chronic disease.

Rosalind Joffe (of C. I. Coach) and Joan Friedlander have written Women, Work and Autoimmune Disease: Keep Working, Girlfriend, which a great resource.

The book, which is strongly pro-work, reviews:

1. The benefits of working, including money and health coverage, as well as enjoyment and self-esteem.
2. The challenges to working when coping with a chronic illness, such as fatigue and the unpredictability of illness.

What is wonderful about the book is that it doesn’t shy away from tricky subjects such as, Should you discuss your illness with your boss or co-workers? And, What do you do when you physically can’t do your job. Instead it gives thoughtful, knowledgeable advice.

Women, Work and Autoimmune Disease is easy to read and practical. I particularly liked the complex, real-life examples. Both authors are experts in this field. Rosalind coaches people through these issues everyday. And both women also understand these issues personally, having dealt with MS, Crohns disease, and Ulcerative Colitis. I strongly recommend adding this book to your reading menu!

If the only sentence describing a book was that it contained “harrowing descriptions of pain,” most people would probably run the other way. But for me, a pain management psychiatrist, that phrase is a clear invitation to rush to the first page. South African author J. M. Coetzee has written Age of Iron which describes the pain of apartheid, loneliness and cancer.

Here are some of the quotes describing the lead character’s experience of physical pain:

I was on my way out to the shops, in the act of opening the garage door, when I had a sudden attack. An attack: it was just that: the pain hurling itself upon me like a dog, sinking its teeth into my back. I cried out, unable to stir.

As long as the burden is a burden of pain alone I bear it by holding it at a distance. It is not I who am in pain, I say to myself: the one in pain is someone else, some body else who shares this bed with me. So, by a trick, I hold it off, keep it elsewhere. And when the trick will not work, when the pain insists on owning me, I bear it anyhow.

Describing the effect of narcotics:

As the pain recedes, as time quickens, as the horizon lifts, my attention, concentrated like a burning glass on the pain, can slacken for a while; I can draw breath, unclench my balled hands, straighten my legs. Give thanks for this mercy, I say to myself: for the sick body stunned, for the soul drowsy, half out of its casing, beginning to float.

But the respite is never long. Clouds come over, thoughts begin to bunch, to take on the dense, angry life of a swarm of flies.

I took two of the new pills. Again the miraculous draining away of pain, the euphoria, the feeling of being restored to life. I had a bath, got back into bed, tried to read, fell into a confused sleep. In an hour I was awake again. The pain was creeping back, bringing with it nausea and the first edge of the familiar shadow of depression.

The drug over the pain: a shaft of light but then darkness redoubled.

And this passage, on life and illness:

We sicken before we die so that we will be weaned from our body. The milk that nourished us grows thin and sour; turning away from the breast, we begin to be restless for a separate life. Yet this first life, this life on earth, on the body of earth – will there, can there ever be a better? Despite all the glooms and despairs and rages, I have not let go of my love of it.

Have you ever come across something that puts into words exactly how you feel, or what you think? Your own ideas may be slightly fuzzy, but here in front of you is the finished product. Maybe you’ve had this experience when reading a poem, or listening to someone summarize a discussion. Your thoughts – well put!

I had this experience while reviewing Rebecca Rengo’s workbook Beyond Chronic Pain. It’s an excellent guidebook for patients to learn pain management skills and an overall approach to coping with chronic pain.

Some of the areas reviewed include:

• managing pain
• pacing activities
• increasing enjoyable activities
• facing fear
• advocation for yourself
• improving sleep

I really like the workbook format. It enables you to individualize the information provided in the book, and it encourages you to actively use the information. For example, in the section on enjoyable activities, there’s space for you to write what you do that’s fun, as well as new activities you’d like to try. Space to write down exactly what you’ll do and when helps you move in a positive direction, rather than just think about improving things.

The workbook takes a positive tone, so it encourages and supports you. Rebecca actually works with patients, so what’s included is useful and relevant. Lastly, the author has also experienced chronic pain herself, wich gives a personal understanding to the guidebook.

I’d recommend this book both for people to use on their own, and to support their work with a pain management counselor. Thanks to Rebecca for actually creating a workbook that lets clinicians say, “This is exactly what my patients need!”

To purchase, you can contact Rebecca at Rebecca@rebeccarengo.com.

You’ve just turned 90 years old. You now have to wear glasses, take an aspirin each day, and you just can’t bungee-jump like you did at 89. Unfortunate, but not unexpected, right? However, what if you’re in grade school and already you’ve:

• been diagnosed with asthma
• had more hospitalizations than the number of years old you are
• been diagnosed with arthritis
• had ear-nose-and-throat surgeries every year, and more

This was the start of Laurie Edward’s life, and her medical saga has continued. She’s now 27. She chronicles her experience in her new book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. It’s a great read! Life Disrupted is not just a medical drama – unclear diagnoses and life-threatening illnesses – though that’s in there. It’s a look inside at how someone copes and thrives with serious chronic illness. Laurie talks about many aspects of living with illness, including:

• managing your health and health care without it taking over your life
• how to have a full life despite chronic illness (relationships, work and hobbies)
• living with an invisible illness
• talking with others about your illness
• how illness affects your relationships

The book is written in an engaging style. Laurie’s a truly gifted writer – and is often humorous. You can read how she’s almost unable to breathe, but is trying to correct just one more student paper. How she’s debating about Easy Spirit practical shoes, while her friends are enjoying Sex and the City Manolos.

I’d recommend this book to all who have a chronic illness, or know someone who does. You’ll learn how someone else deals with the problems of illness, and may pick up some tips. You’ll also see someone else’s struggles, and feel less isolated. Laurie is a role model for living fully despite challenges, and Life Disrupted is a gift to us.

What if the benefits of the relaxation exercises you do, such as breathing, visualization, guided imagery and hypnosis, continued 24/7? That would be pretty great, right?

I’d guess most people would hope and expect to get some benefit, say reduced pain, during their meditation practice. If this benefit continues outside of those 15 or 30 minutes, that’s extra. However, another way to look at meditation practices (and possibly other relaxation exercises) is that your period of practice, those 15 or 30 minutes, is just that – practice. And what you’re practicing for is the other 23 ½ hours – the rest of your life.

A reader, Kelli B., wrote in with these comments. She says, in summary:

These thoughts were spurred by someone with chronic pain who said that “the pain goes away when I meditate, but returns when I stop meditating.” I’ve noticed that people often assume that meditation is a special activity, one largely separate from the moment-by-moment unfolding of one’s day.

A fairly standard element of a deeper meditation practice is to aim to meditate throughout all daily activities. Meditation continues while performing other tasks, and in fact, sometimes makes them easier and less stressful.

What I’d like to offer is the following perspective. It isn’t a matter of meditating several times a day, but of aiming to treat whatever arises in one’s daily, moment-to-moment life, as an element arising in a meditation. This can be pain, or emotions such as anger, sadness, anxiety, etc.

Many meditation traditions emphasize that the purpose of the separate meditation “sitting” is actually to develop mindfulness for the express purpose of eventually expanding the practice of mindfulness throughout one’s daily activities, and all of one’s moments. The most familiar examples of this are probably the Zen tradition’s treatment of simple daily work activities and personal relationships as platforms for meditation.

Meditation might be a much deeper resource for people when pursued more deeply and in an ongoing manner.

See also:

• 2 types of mindfulness
• How mindfulness helps with chronic pain

Nickie Coby has written an inspirational book, Nickie’s Nook: Sharing the Journey.

Nickie, a college student, is the author at Nickie’s Nook, a blog about her experience with pain, sight-impairment and living. I found her book really interesting and enjoyable to read. It talks about her pain condition (RSD), how she copes, and the challenges she experiences because of pain. Nickie is also blind, and she relates what that experience is like, too.

Having had severe pain myself, I’m always curious about someone else’s pain experience, seeing how they deal with the challenge of pain. My sight, at least with glasses, is fine, so reading about the challenges of sight-impairment was an eye-opener (no pun intended).

Nickie writes about the challenges of coping with pain and blindness and functioning fully in our society, attending college, working with her guide dog, independence and interdependence (great writing), and spirituality. As a physician and blogger, I was also interested in her chapters on access to both healthcare and the web for people with disabilities.

When someone is challenged in some way by disabilities, there’s a risk in describing the person’s story as inspiring, because it can seem condescending. So I hope that’s not what I’m communicating between the lines here. I was truly struck by Nickie’s courage and perseverance. And the book was a fun read – humorous and engaging.

I’d recommend the book to anyone interested in these topics. Stop over at her blog, too – lots of great reading there, as well. Thanks, Nickie, for writing your book as well as sharing it with How to Cope with Pain!

A recent study showed that mindfulness exercises can significantly help low back pain in older adults.

8 sessions of training in mindfulness, which is awareness that emerges through paying attention on purpose, in the present moment and non-judgmentally, to the unfolding of experience moment by moment, were given to older adults with chronic low back pain. Participants in the study meditated an average of 4.3 days a week and 31.6 minutes per day.

3 techniques of mindfulness meditation were taught. These techniques take regular activities such as sitting, walking and lying down, and transform them into a meditation through directed breathing and mindful awareness of thoughts and sensations. Several attitudes that support mindfulness meditation were emphasized throughout the 8 classes, including patience, non-judging, beginner’s mind, acceptance, letting go, non-striving and trust. Letting go of struggle and accepting one’s condition without judgment are critical concepts in mindfulness-based programs.

Significant improvements were seen in 1) acceptance of pain, and 2) physical functioning. The majority of participants continued to meditate at the 3-month follow-up, suggesting they found enough benefit in meditation to continue it on their own. Nearly 1/2 of the participants reported reduction in pain and sleep medications 3 months after completing the study.

The original article is: Morone NE, Greco CM and Weiner DK. Mindfulness meditation for the treatment of chronic low back pain in older adults: A randomized controlled pilot study. Pain. 2008 ; 134 : 310-9.

Wouldn’t it be comforting to have a friend who knew what you were going through with chronic pain? Wouldn’t it be encouraging to have a support whom you found inspirational?

Sister Janice McGrane shares with us these resources in her book Saints To Lean On: Spiritual Companions for Illness and Disability. I recently interviewed her about her own experience with the challenges and positives (yes, positives!) of living with chronic pain. In her book, she describes 11 saints who have lived with disability and illness. She presents both what we can learn from their lives and how they responded to illness, as well as invites us to call upon them to support and assist us.

Do you have to be Catholic to find this book wonderful? No. Do you have to be nearing sainthood yourself to find this book helpful? Absolutely not. Saints are unforgettable people who lived their lives with a close connection to God. But, as described in Saints To Lean On, they are also clearly human beings with weaknesses and doubts. I found the 11 stories inspiring and full of helpful insights. I liked the book so much that I’ve already bought 2 other copies to give to friends with physical challenges.

Sister Janice McGrane’s book is a true gift to people who are challenged by illness.