For those of us who live with fibromyalgia, we are painfully aware of it everyday. But May 12 has been designated to educate others. The theme this year is “Your Voice Matters” to call attention to the fact that everyone has a say in education, awareness, and making changes to help those who suffer from chronic pain.
What it Is
As I described in an earlier post, extreme fatigue, sleeping issues, and that “I-just-got-run-over-by-a-Mack-truck” feeling are the most prevalent symptoms for me. Other common symptoms of fibromyalgia include:
Constant dull ache on both sides of the body and above and below the waist
Sounds great, huh? Lucky me, as I have both! Diagnosed with Fibromyalgia in 2000 and with Osteoporosis in 2015. I know and live with chronic pain, but try my best not to let it get me down or slow me down. And then there are all of the other weird ailments that get lumped in with this condition, for lack of any other explanation. Here’s a list of 100 Symptoms of Fibromyalgia. I have probably had most of them at one point.
So in the spirit of helping with awareness, here are a few other websites and bloggers I follow that write about life with fibromyalgia:
Counting My Spoons where fellow fibro-warrior Julie writes to educate others on many health issues
Dr. Murphree’s site has good information on the condition; listen to one of his conference calls
Read my earlier post of how I cope – healthy lifestyle choices are the best methods for me and I feel it when I make bad eating choices or have high stress levels
My Voice Matters
Hopefully I have provided *a little* awareness on this “invisible” condition. So the next time I seem a little grumpy or am moving slowly, it’s probably because when I crawled out of bed and kicked fibromyalgia in the butt that morning, it kicked back.
Do you have any good resources for fibromyaglia or coping with chronic pain to share?
Much like a tornado that touches down and wreaks havoc, Fibromyalgia can get triggered by a single event and then linger for awhile.
John Lennon wrote “Life is what happens while you’re busy making other plans.” I have always liked that quote, probably because I am guilty of it at times – too much planning and not enough living. Easier said than done I guess.
It’s been over a month since my last entry where I talked about my Fibromyalgia. I truly hadn’t had a bad flare in many, many months and was feeling wonderful. So I wrote about it. And then few days later I had a physical therapy session left me looking like someone had beat me with a bag of marbles. Trigger flare. I finally got out of that flare just in time for a two week vacation at the holidays. I had planned on spending some of my time brainstorming and planning this blog thing out (not sure I can technically refer to this as a “blog” yet), but then life once again happened.
A little background… I am a technology manager for a local municipality on a daily basis. Within the City there is an Office of Emergency Management. They are professional worriers, planning for the worst (and hoping for the best). There are two of them, so if when situations arise, they pull in predetermined resources across the City to fill roles in a traditional incident command structure. Enter me. I am part of this “Disaster Response Team.”
So, even longer story short, we were experiencing unseasonably warm weather for Texas at Christmas. The day after was a different story. Thunderstorms, tornado sirens, and then a call from work. During bad weather that couldn’t be good. News of a tornado. We didn’t know it at the time, but an EF-4 tornado touched down in the southern part of the town. I made my way to work, and started handling Logistics, which means helping the “first responders” get resources they need to do their job.
For two weeks I worked long hours with few days off, in support of these operations. I was handling it remarkably well I thought – long hours, little sleep – and then I got New Year’s Day off, and the adrenaline wore off. My fibromyalgia flared again with a vengeance. So now, one month later, I still feel like someone beat my body with a bag of marbles and am struggling to come out of this vicious cycle.
Much like a tornado that touches down and wreaks havoc, Fibromyalgia can get triggered by a single event and then linger for awhile. “Long term recovery” is what we are calling the next phase for our city and citizens, and for me that’s what Fibromyalgia is. I may feel fine for long stretches and then something can trigger it, and I am down again. I try not to let my condition slow me down. I get up each day with a positive attitude (it could be worse), look for inspiration, and keep pushing and planning to break the cycle.
Having seen first-hand the destructive force of Mother Nature, the resiliency of those affected, and the compassion of a very large community of people, I really have a new perspective about “when life happens”.
A little more about me today. If you are familiar with the symptoms of fibromyalgia, you might have heard the term “fibro-fog” describing those periods where you can’t think right, and sometimes suffer memory loss or have difficulty concentrating. It is a very real thing for us fibro-mates. I have experienced this feeling more times than I care to admit, and to this day my memory is not as good as it used to be. I was diagnosed with fibromyalgia in 2000, and have probably have had it since I was a teen.
I have long considered myself a “highly functioning” fibromyalgia sufferer because no matter how crappy I felt, I have always tried to push through. I rarely take sick days so if I do, you know it’s bad. There have been plenty of “mack truck mornings” in the last 15 years, but THANKFULLY those days are fewer and fewer for me.
I still have flares occasionally, but they are not as bad or as long lasting as they once were. After years of various medications and trial and error, I believe I have found what works best for me. Disclaimer: I am not a doctor, nor do I play one on TV. I have not received any sort of compensation from any of the people/sites I mention later on. I have just done lots of research and been to my fair share of doctors. But I am a firm believer in a more natural approach as I seem to have severe reactions to many medications I am prescribed. I believe in letting the body heal itself – this is what works for me. These are my opinions.
A few weeks ago I remembered a time when I was 16 that we thought I had mononucleosis. I was suffering from extreme fatigue and had lost a lot of weight. My mother took me to the doctor where they ran tests for mono, strep, etc., and treated me with ampicillin for some infection I cannot recall. At the time I was a vegetarian too, and I can remember my mother telling me that if the doctor thought that was why I was sick, I was going to have to eat meat again! I ended up quitting my part-time job for several months due to the fatigue. I think this illness at 16 must have been my trigger for fibromyalgia, or the first bout I had with it.
About 8 years ago I heard about Dr. Murphree from a friend whose wife also has FMS. I looked him up and signed up for his email newsletter. I listened to a few of his teleconferences and started researching vitamins and minerals that I needed. I ditched all of the medications and started taking various supplements morning and night. This seemed to help, but I was starting to experience more frequent digestive issues and had a series of health issues from 2011-2012. In 2012, one of Dr. Murphree’s newsletters led me to JJ Virgin and her book The Virgin Diet. Now I have always been relatively slender and I work out regularly, but the premise of her book – ditch 7 foods for 7 days and lose 7 pounds – intrigued me.
It wasn’t so much the possibility of losing weight as it was finding those foods which trigger bad reactions and are most likely to cause the inflammation in my body. Since my teens and 20s I have had various reactions to what I thought was yeast – breads, cakes, and later wheat beers. Turns out it was probably the gluten and sugar. So I did the trial and found that wheat, sugar, and dairy are definitely triggers for me. For the most part, I have ditched gluten and dairy, but I do occasionally cheat. And my stomach will pay the price.
So what has helped me lift the “fog” and keep my symptoms at bay:
1. Exercise. I exercise daily if possible, usually first thing in the morning. I walk on the treadmill or elliptical, walk the dogs, do yoga or pilates, and use light weights. I aim for 30 minutes a day for at least 6 days. There’s usually one day a week that I am so tired I cannot get up to work out during the work week.
2. Diet. As I said I avoid certain foods and artificial ingredients. I also prepare most of my own meals and rarely eat out. Sundays are a big meal prep day for me. And they wear me out. But it’s worth it.
a. My breakfast is usually a protein smoothie with almond or coconut milk, pea protein powder, fruit, kale, and chia or flax seeds stirred in at the end. Also 1-2 cups of black coffee.
b. My lunch is usually chicken/veggies/rice or a chicken salad or leftovers or hummus and veggies.
c. Dinner usually contains lean protein, veggies, and rice.
d. I drink a lot of water. Hot water with lemon. Iced water – plain or fruit-infused.
e. I usually allow myself some dark chocolate or homemade protein balls or granola bar, and usually almonds and fruit are my snacks during the day.
f. At night I sometimes drink hot herbal tea to help with digestion.
3. Accountability. I use a FitBit fitness tracker and MyFitnessPal app. These two items help me be accountable to myself.
4. Supplements. At night I have reduced the number of supplements I take, as I don’t feel the body can absorb all of those things and it is better to get them through your food. I take Calcium + Vitamin D (otherwise I wake up with ferocious leg cramps, plus it’s good for my osteoporosis), Fish Oil (to help with the inflammation and brain health), and a probiotic (for digestive health).
5. Not trying to do it all. I have had someone else clean my house since right after being diagnosed. I don’t get my nails done. I don’t eat out. I would spend a day or two in bed after cleaning my house, so this is my splurge. My husband and kids do their own laundry and help with chores around the house. They understand my condition and don’t demand things of me – I am the one putting pressure on myself to try to do it all.
6. Attitude. Again, I have had my fair share of being sad and depressed about feeling like crap and not being “superwoman,” but attitude is a powerful thing in the battle of one’s health. So I choose JOY. I smile. I try to always believe that my glass is half full.
Notice I didn’t mention sleep, because that is one area where I am still lacking. Six hours of sleep is a great night for me, but five hours is the norm. And it’s even better when I can sleep straight through. This is an area I am working on, but for now life is good.
I hope this helps give you some ideas about what has helped me with my FMS struggles. (Click the links for additional reading.) Do you have other things that have helped you?
If It’s Tuesday, This Must Be Belgium is the title of a movie from the 60s that I saw as a kid. I don’t remember much about it, but the title stuck with me all these years and it always made me want to travel to Europe. Fast-forward several decades, and my family has done a little traveling in the states and abroad. Giving my children experiences has always brought me greater joy and pride than giving them things.
Because my daughter loves traveling as well, she recently announced her interest in studying abroad a semester when she is in college. A few weeks ago, I thought studying in France would be a tremendous opportunity, but now recent events has given me mixed emotions about the safety of foreign travels and studies.
Last week I read about a victim from the tragedy in France that really hit home with me. Her name was Nohemi Gonzalez and she was a design student from California, probably living her dream to study in Paris. She was out having dinner when she became a victim with so many others. As a parent I cannot imagine how difficult it is for anyone to lose their child, especially in such a tragic and brutal way that makes news around the world. We want to believe we will always be able to protect our children, but the most we can hope for is that we did our job in raising them so that they take care of themselves and make their mark on the world.
These days it is getting harder and harder to rest my head on my pillow after hearing the news of the day. Violence at home and across the world is common place. I worry that people are becoming desensitized because they hear these stories daily, and not enough of the “feel-good” stories to balance things out. Mahatma Gandhi said, “Be the change that you wish to see in the world.” Some days those things that are within our control are the only things that can make a difference. Here are the things I try to do to maintain balanced karma in my life, and hopefully I can make a difference for someone else along the way.
Love one another.
I plan to continue to travel and experience all our wonderful world has to offer, including Belgium and France some day. As we approach the holiday season and reflect upon those things in our lives that we are most thankful for, what is it that you do to maintain balance?