Awareness for fibromyalgia is much greater than it was two decades ago, but how far have we come in understanding this invisible illness? As I look at the research regarding the physiologic effects of fibromyalgia, I believe we have moved forward. We know there are physical, measurable changes in our brain, and we see differences in our central nervous system, including autonomic, metabolic, and immune effects. These effects contribute to restless leg syndrome, abnormal sleep patterns, headache, irritable bowel or bladder, and temporomandibular joint dysfunction (TMJD). Genomic research is moving forward using the FM/a blood test to identify study participants.
These are exciting times. But, we don’t have a cure, so we must find ways to manage. Following are seven tips for how we can reclaim control over fibromyalgia.
Tip 1: Identify symptoms
- Identify our symptoms. What are they? Describe them.
- Track any relationship to what we eat, how we sleep, our physical activity or inactivity, daily stressors, etc.
Tip 2: Communicate
- Tell healthcare providers about escalation of present symptoms or development of new ones.
- Let our healthcare providers know how our symptoms interfere with our daily lives.
- Sustain mutually rewarding relationships.
- Include family in our healthcare strategy.
- Explore ways to improve our plan with our healthcare team.
Tip 3: Know our medications
- Know why we are taking medications. Are there any interactions with other medications, food, alcohol, etc. What things should be reported?
- Report adverse affects or reactions, medication errors, etc. to our physician, pharmacist, and at FDA Med Watch.
- Check safety concerns at Drug Watch and/or the Food and Drug Administration.
Tip 4: Utilize management skills
- Put our needs in perspective.
- Organize our tools. For instance, my tennis ball, health box, Oska Pulse® and Theracane® are next to my recliner.
- Organize our medications. I have pill organizers for my daily meds, and I write the name and expiration date on the lid of my medicine bottles. This comes in very handy when greeted with a migraine at 4 a.m.
- Set and prioritize reasonable goals and re-evaluate them periodically.
- Avoid making excuses.
- Know our inbox!
- Don’t be a clutter bug.
- Don’t pay tomorrow for a hamburger today.
- Get a second opinion.
- Solicit help when needed.
Tip 5: Manage our fibro aggravators
Subscribe to the World's Most Popular Fibromyalgia Newsletter (it's free!)
- Minimize factors that interfere with pain and sleep.
- Identify and manage perpetuating factors and co-existing conditions.
- Utilize our personal arsenal, i.e. stretch therapies, movement strategies (mine is Tai Chi), and avoid over using unconditioned muscles.
- Pay attention to posture.
- Avoid repetitive movements.
- Set aside rest periods.
- Use good sleep hygiene techniques.
Tip 6: Explore other things
- Keep a journal.
- Join a support group.
- Smile at a stranger.
- Accept some things can’t be fixed.
- Practice affirmations.
- Practice mind-body movement. Science is shifting perspective on exercise and fibro.
- Make a list of words for your personal word wall.
- Recognize opportunity when it knocks.
- Enjoy a birth every day, a flower, a baby, a friendship, a kind word.
Tip 7: Enjoy the wait.
Who enjoys waiting? I do. For instance, I plan to arrive early to appointments, and with the advent of the GPS, I don’t get lost so easily. What started as a routine to avoid panic and anxiety now means so much more to me. I used to take magazines, but now I can read books on my phone or read the blogs of my fellow bloggers. I have learned to love the wait so much that I have to remind myself not to get upset if the doctor is actually on time.
I think we can all agree that life with fibro is unpredictable. We can’t control that, but we can control the way we respond. Let’s support one another and share with each other as we raise awareness this month.
“And so I wait. I wait for time to heal the pain and raise me to me feet once again –
so that I can start a new path, my own path, the one that will make me whole again.”
~ Jack Canfield, Chicken Soup for the Teenage Soul II
Celeste Cooper, RN, is a frequent contributor to ProHealth. She is an advocate, writer and published author, and a person living with chronic pain. Celeste is lead author of Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain and Broken Body, Wounded Spirit, and Balancing the See Saw of Chronic Pain (a four-book series). She spends her time enjoying her family and the rewards she receives from interacting with nature through her writing and photography. You can learn more about Celeste’s writing, advocacy work, helpful tips, and social network connections at CelesteCooper.com.