When first getting diagnosed with fibromyalgia, it can be a confusing and overwhelming time. You may have been living with it for quite some time, but a diagnosis is something altogether different. What’s causing your mysterious symptoms is no longer a mystery, but now the question is how to begin healing. And if you have kids (making you a fibro parent), the journey can be a bit more distressing if you don’t know where to begin. Here are the top four fibromyalgia books for a parent living with fibromyalgia.
This article first appeared in The Fibromyalgia Magazine in September 2018.
Top 4 Books for a Parent Living with Fibromyalgia
The First Year: Fibromyalgia: An Essential Guide for the Newly Diagnosed
by Claudia Craig Marek, MD
The day I was diagnosed with fibromyalgia, was one of the most exhilarating days for me. It was a relief to know there was a cause to all the maddening symptoms I was experiencing, but at the same time I had no idea where to go from that point. After voicing this concern to my diagnosing physician, she loaned me a copy of The First Year by Dr. Marek, and said this would answer nearly all of my questions about fibromyalgia. She was absolutely right.
Claudia Craig Marek is not only a physician, but she’s also a fibromyalgia patient. Her story of living with fibromyalgia is all too familiar, making it easier to relate and understand the frustration we all experience at some point. She takes the reader day by day for the first seven days after diagnosis, followed by the next three weeks, and finally the last eleven months. Adjusting our lives to a new illness takes time and cannot be done in a small window of time which makes the layout of this book essential to someone newly diagnosed.
What’s in the book?
This guide explains how to understand the illness from a medical standpoint in easy to understand language as well as understanding the symptoms, treatment options, and mental components to it. From knowing how to choose the right doctor to self-management strategies, Dr. Marek does a thorough job in answering all those questions we all have when faced with such a complicated illness.
When it was time to give the book back to my doctor, I purchased a copy for myself. Five years later and I still refer back to this guide for multiple topics and resources. I’ve read it numerous times and continue to learn and understand something new each time I read it. Read more in my review.
Fibro Mama: Pregnancy & Fibromyalgia
by Melissa Reynolds
Even though I first started experiencing symptoms after the birth of my first child, I was not diagnosed with fibromyalgia until nearly a year after my last child was born. Despite multiple attempts to find out what was happening to me, each physician attributed my pain as normal mom tiredness, pain, and mental anguish. And each time I became pregnant, the pains would only intensify. Again, I was told this was normal pregnancy growing pains, and would resolve after the baby was born. Each pregnancy following my first was excruciatingly painful and wreaked havoc on my already weakened body. Because I didn’t know I was living with fibromyalgia, I was unable to care for my body at the time when it needed it the most. It still angers and saddens me to think of the unnecessary strain I put on myself.
Can the book really help with pregnancy?
Fellow writer and fibro parent, Melissa Reynolds of the blog Melissa vs Fibromyalgia, has created a valuable resource with Pregnancy & Fibromyalgia. With so little information regarding pregnancy during fibromyalgia, Melissa conducted her own research and compiled her findings into this book. Along with her personal experiences and the experiences of other fibro moms, she gives the advice and encouragement so many moms need while living with fibromyalgia during pregnancy.
It is possible to have a healthy, enjoyable pregnancy despite living with an unpredictable illness, and Melissa shows how it is possible through various treatment options and tips on how to effectively manage fibromyalgia during pregnancy. In addition to her book, she created a group exclusively for pregnancy and fibromyalgia on Facebook called “Fibro Mama Pregnancy and Fibromyalgia”. Read more in my review.
Ravyn’s Doll: How to Explain Fibromyalgia to Your Child
by Melissa Swanson
After learning to adjust to living with fibromyalgia, I wanted to learn how to tell my kids about my illness. Up to this point, my kids knew I wasn’t feeling well, but they didn’t fully understand it. I didn’t look or sound sick, but I also wasn’t able to play or interact with them like their friends’ moms. My husband and I discussed ways to tell them about fibromyalgia and the appropriate words and phrases to use so they could understand what was happening to me. It was important to us that my kids understood it was not their fault in any way, and there were ways they could help.
It was a bit tricky explaining fibromyalgia to my kids. They had a lot of questions, and some of it was hard to explain without the aid of visuals or comparisons. This is where Ravyn’s Doll makes it easier for a fibro parent.
What’s the book about?
Melissa’s children’s book is based on Ravyn, a little girl in kindergarten whose mom is living with fibromyalgia. Ravyn’s class is having a health lesson on sickness, and the school nurse asks the students to make a paper doll representing a family member who is sick. When Ravyn shows her paper doll, her doll doesn’t appear to be sick like her classmates’ paper dolls. She then explains fibromyalgia, what it means, and how she helps her mom with her illness.
Through the use of vibrant colors, children’s language, and lovable characters, Melissa creates a reliable resource for fibro parents to explain fibromyalgia to their children. The story opens the door to a conversation about the illness and how it affects the entire family in terms of symptoms and help. It goes a step further to show children that illness can’t always be seen, and there are various ways for a person to be sick.
In addition to her book, Melissa has created a coloring book, Ravyn’s Doll: How to Explain Fibromyalgia to Your Child: The Coloring Book, and is available for purchase on Amazon. Read more about Melissa over on her blog Fibro Warriors Living Life.
The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain
by Sarah Anne Shockley
Chronic pain is one of the biggest symptoms I’ve had to learn to cope with over the years. This is true for many fibromyalgia sufferers, along with mental anguish that the pain usually brings with it. And it’s not just the physical pain it causes, but rather the disconnect, anxiety, and depression that also accompanies it. While the ailments of fibromyalgia can’t always be seen, the emotional part shifts something inside of us that moves us closer to isolation, rejection, and hopelessness. This does nothing for healing the body or mind when living with a chronic illness.
The Pain Companion recognizes the pain as a separate entity to be dealt in its own way. The author shows us how to accept this pain for what it is, and how to embrace it in a healthy way in order to properly heal. Not only are you shown how to accept the pain and how to cope with it, Sarah walks you through each of those negative feelings of anxiety, depression, stress, guilt, shame, powerlessness, anger, and more. She shows you that it’s okay to have those feelings and how to overcome each in your own time and way. The third of the four parts teaches how to meditate on the physical pain to find relief through more than a dozen approaches outlined in her book.
Sarah’s personal struggles with pain and the voice she gives to those struggles makes for an emotional read as you identify with each of those negative feelings. While reading this book, I thought, “If someone asked me what it was like to live with chronic pain daily, I would give them this book.” It truly unveils what it’s like to live with pain day in and day out, and has truly changed the way I perceive and handle my physical pain.
Read more about learning to cope with the negative feelings of chronic pain.