Less than 12 months ago, I was diagnosed with Fibromyalgia. Although I’d heard of this affliction, I was not only naïve about it; I didn’t even know how to spell it. Since my diagnosis of the mysterious ailment, which both my sisters also have, I’ve learned so much, but the road ahead is still long.
One of the first things I did when I was diagnosed was search the Internet for more information on this often misunderstood disorder. According to Wikipedia (www.widipedia.org), fibromyalgia, often called fibro, is a disorder classified by the presence of chronic widespread pain. With this pain come several other ailments we fibro patients must learn to deal with. They include chronic fatigue syndrome, irritable bowel syndrome, difficulty sleeping, anxiety and depression. Fibro seems to strike more women than men, and recently researchers have come to believe that fibro is genetically predisposed.
About the same time that I was diagnosed with fibro, the awful pain and tingling I’d been experienced in my legs for several years was identified – I also had RLS (Restless Leg Syndrome). Requip took care of my RLS for me; for some Mirapex works best, as in the case of my mom and my sister.
My doctor also discovered a bit of arthritis in my knees and hands. To top that off, my chiropractor discovered a curvature in my spine. Within about one month’s time, I was diagnosed with three life-altering disorders and discovered my spine was not what is should be. I was overwhelmed.
Mourning my lost lifestyle
I had been active all of my life. As a child, I played outside from dawn to dusk, constantly on the move, riding horses and motorcycles, playing baseball and basketball, climbing trees – I never seemed to stop. As a young teen, I played volleyball, basketball, and joined the track team. I was a tomboy in every sense of the word.
Even after becoming a parent as age 20, I maintained an active lifestyle. I was always an independent soul, so I was used to rearranging my living room on a whim with no help needed! I had no problem hauling in my own groceries while holding my son in one arm, and carrying large baskets of laundry down the basement steps didn’t even phase me. Slowing down and being kind to my body was something I had to learn, and while it was life-changing, it was the smartest thing I did for myself.
That doesn’t mean I didn’t mourn for my past lifestyle; I did. It was very hard to ask for help with those groceries and the large laundry baskets. It was tough to accept the fact that I could no longer carry a heavy bag of trash out to the curb. But as tough as it was, I knew that if I didn’t embrace these changes and adopt a new lifestyle, my quality of life could be poor – very poor.
A New Life
Slowly but surely, I started educating myself about fibro and how best to live with it, treat it and deal with the symptoms. Again, I turned to the Internet. I found a wonderful and informative website at www.fibrohope.org. The information I found there was detailed, and presented in a way I could easily understand. I learned about the symptoms, tips for working with your doctor to manage the disorder, and the latest treatments and medications. I also learned that I was not alone, and that was very comforting.
I learned that I had to take breaks during the day when doing routine household chores. I learned that if I refrained from the heavy lifting, even on the good days, I’d be thankful that I did, for that meant less pain later in the day. I learned to avoid caffeine later in the day so I would sleep better at night, and that some herbal teas would help me relax to I could fall asleep. I learned that there were many things I could do instead of popping a bunch of pills, and I liked that. I also learned something very important – stress plays a huge role in increasing the symptoms of fibro.
I had always believed that what made a big difference when it came to stress was how I chose to handle that stress. After all, I choose my reactions and to situations. Situations can’t “make” me feel any particular way – I decide my reactions. So, I learned to look at stressful situations in a different light. For example, when a stressful situation arises, I often ask myself, “Will that matter in five years? Will this dramatically change the course of my entire life?” Surprisingly, the answer was often a resounding “no.” I was amazed at how adopting a new attitude made me realize that I had been stressing out over so many little things. I found this mostly happened when dealing with my teenage daughter, who, like most teens, believes I was never a teen and have no clue what I’m talking about. When she would disagree with me or get attitude when she wasn’t allowed to do what she wanted, I would really stress out about it. I realized that I was making a huge deal out of this and that in a week, none of it would matter. I stopped getting sucked in to the argument with her, and I stopped helping her achieve her goal of getting a rise out of me. I remained calm and firm, and within days, a stressful situation became much easier to deal with.
I began to get into the habit of adopting this mindset in many situations. I could stress out and cry and become angry if I ran out of gas on the interstate, but behaving that way wouldn’t fill my tank and wouldn’t help the fibro. I could throw a fit if I was making a cake and reached to get eggs, only to find out I didn’t have any. Or, I could roll my eyes, call it a total blonde moment and get to the store quickly to get the eggs I needed, knowing that by the end of the month, this incident would have no baring on my life. The stress level would remain low, and I would increase my chance of experience a serious fibro flare-up.
Finding ways to reduce the stress, in whatever way works for you, makes a huge difference in fibromyalgia.
There is not universal cure for fibro. There are medications to treat the symptoms, with NSAID medications being a popular treatment. I was prescribed several medications, but some of them made me feel drowsy, and with my busy schedule and as much driving as I do, I had to be so careful about when I took them. I was prescribed Naproxen, and it does help without the drowsiness. I was taking Vioxx, and when that was pulled off the shelf, that changed to Celebrex. Again, it does help but made me feel a bit sleepy.
Sometimes, a physician will prescribe an antidepressant, as some doctors believe chronic illness can cause depression. I was given amitriptyline, but it affected me negatively. Some people may find that amitriptyline works incredibly well for them. Other medications that are sometimes used in the treatment of fibro are anti-seizure medications, serotonin reuptake inhibitors, some forms of dopamine and even marijuana. Some have found relief in something as simple as Epson salts, touted for relieving swelling and pain.
It’s vital that those with fibro talk candidly to their physician about what treatments are going to work best. Each person is different, and sometimes, combinations of treatments work best. Regardless of what is going to work for you, you must learn to listen to your body and learn what the triggers are that cause the fibro to be worse.
For me personally, I combination of taking breaks, even napping if necessary, the naproxen and sometimes, simple over-the-counter ibuprofen are all I need. Avoiding heavy lifting, which strains the muscles, is something else I found that helps me. Since cold weather seems to make the pain increase, I make sure I wear a good, heavy coat, hat and gloves. Even little things like that make a huge difference.
Diet and behavior
Some believe that therapies, such as cognitive behavioral therapy, help relieve the symptoms of fibro, as well as avoiding monosodium glutamate. Others tout ginkgo biloba and folic acid as a good way to treat symptoms. Again, these are things that need to be discussed with your physician.
It’s all in your head
One of the biggest hurdles fibro sufferers face is others who do not understand the disorder or who are uneducated about it. Fibro is sometimes referred to as an “invisible illness” because the symptoms cannot be seen simply by looking at someone. Anyone who looks at me would never know I have fibro, or arthritis or a curve in my spine. I look perfectly healthy. Therefore, when I tell people I have fibro, they either do not believe me or get an odd look on their face. Even my own husband has difficulty understanding, mostly because on my good days, he’ll see me doing laundry, sweeping and mopping the day away, and find sit hard to believe that some days the pain is so great and the muscles to very tender, it hurts for anyone to even hug me.
This is without a doubt one of the hardest aspects of fibro – helping others understand. In fact, it’s even difficult for me to describe: pain so deep in the muscles it’s as if my bones hurt, tender-to-the-touch skin, aching, and fatigue so strong I can barely keep my eyes open.
In the end, all that really matters is how YOU feel. You know your body, you know what you’re feeling, and you’re going to know what works best for you to alleviate the symptoms. Listen to your body, talk with your doctor, pay attention to triggers and most of all, be gentle and kind to yourself. Take good care of yourself, rest, eat well, and find a good balance with your body and mind. Fibro does not have to mean the end of life as you know it; it just means a change in the life that you know.
I am determined to continue educating myself about this disorder. I am determined to find even more methods to alleviate the symptoms and pain. I am determined to not allow this disorder to have me, or my happy life.