Because so much of the information of what causes fibromyalgia, how it develops, and how it impacts the body remain unknown, there is no cure for it. The handful of drugs that are used to treat it only lessen its symptoms. Many of these drugs are off-label, meaning they were designed for treatments other than fibromyalgia. One such example, Gabapentin, was originally created for seizures, but in fibromyalgia may be used to decrease nerve pain or improve sleep.
Since most of the medications prescribed only treat your symptoms, documentation of your symptoms as a tool for your medical provider can be extremely important. To complicate things further, it is not unusual for fibromyalgia patients to also suffer from an autoimmune disorder such a lupus or rheumatoid arthritis, or any number of other health concerns. Often the other disorder is the first to be diagnosed. Medical journaling or symptom documentation can alert your doctor that there may be something more (e.g. fibromyalgia).
What type of things should you document?
Pain Mapping & Activity
In my darkest days prior to my diagnosis, my physical therapist suggested that I keep a record of what particular body parts were hurting each day. That log ended up being key to my diagnosis because it enabled my rheumatologist to quickly spot a pattern of widespread pain. To this day I still record what body part is hurting each day along with a listing of my activities for the day. This documentation of what is hurting in conjunction with the day’s daily activities allowed me early on to identify activities that would flare me up. For example, handwriting or typing on the PC will flare up my pecs, shoulders, neck and upper back if I am not careful. I actually set a timer when I am on the PC to remind me to stop as it is easy to lose track of time. It stands to reason then that documenting your daily activities can provide some valuable insight.
Tami Stackelhouse in her book “Take Back your Life and Find Hope and Freedom from Fibromyalgia Symptoms and Pain” suggests investing in a step counter. By recording the number of steps taken daily along with your pain level, you can determine how many steps it takes to cause a flare-up so you can avoid surpassing that number. Knowing that number can also assist you in planning your daily activities. For example, if my targeted flare-up number is 1500 steps per day and I have already taken 1000 steps, I might turn down a trip to the mall because I will likely exceed my daily limit of 1500 steps. Hopefully, I will then spare myself a flare-up in my hips, legs and back.
Because people who suffer with fibromyalgia can experience three different types of pain, documenting the type of pain and its intensity daily can provide valuable information to your healthcare provider as well. Is your pain achy like when you have a case of the flu? Perhaps you feel like you just ran a 5k race with muscle soreness in every movement. Or are you experiencing a burning pain? For me it feels like someone just inserted hundreds of tiny needles throughout my body. On a scale of 1-10, what is the pain level of each type per day? A good app to track your pain is can be found at www.chronicpainapp.com.
Sleep (or lack, thereof)
Once you have a handle on how your activity levels can impact your pain, you might want to tackle a study of your sleep quality. Do you have nightswhere it seems you didn’t sleep at all (“one-eyed” sleep)? Do you fall asleep but awaken almost every hour for a brief period before falling back asleep? Are you having trouble falling asleep? This information may be valuable in gaining a referral to a sleep specialist or in obtaining a prescription for a sleep-aide as the sleep of those with fibromyalgia is often dysfunctional. The good news is that Dr. Ginevra Liptan, an expert in fibromyalgia treatment and herself a fibromyalgia sufferer has developed a seven question fibromyalgia impact questionnaire that you can use to keep track of your pain, activities and fatigue. You can obtain a printable copy of the form at her website. This form is easy to use and should not require much time or energy as I realize there are days where just getting out of bed is a victory. If seven questions are too much, focus on one or two to start and the others later. Remember the journey towards wellness begins with a single step or in this case one question!
As always, my thanks to the marvelously skilled staff at Nimbus Massage who assisted with the typing of this blog and who literally keep me moving with minimal discomfort!
Tami Stackelhouse is a fibromyalgia patient herself and a fibromyalgia coach, her book “Take Back your Life and Find Hope and Freedom from Fibromyalgia Symptoms and Pain” offers a number if useful tips in pain relief improving energy levels and sleep, and working with your doctor. Purchase of the book will also gain you access to a free coaching session plus pain documentation sheets and more. The book is available for $14.95 at Amazon.com.