February 13, 2013
Living with Fibromyalgia: Getting Started
Let me start by explaining exactly what fibromyalgia is. According to the Mayo Clinic, “Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” In a nutshell, having fibromyalgia means being in some form of pain pretty much all the time. Sometimes the pain is an annoyingly achy feeling; at other times if feels although you are being stabbed by a red hot needle or knife. It means never sleeping thru the night and feeling tired all the time. It means feeling like you are losing your mind because you forget things you just did or said. And it can mean feeling angry, sad, or depressed for no apparent reason. What you don’t realize when you are first diagnosed is that all of things are part of this condition. Fibromyalgia is a whole lot more than just being in pain
I was just recently diagnosed with fibromyalgia. For months (almost a year, to be honest), I had what I called “random leg pains”. There was no rhyme or reason to the pains. Sometimes it was in my knees, sometimes my thighs; even the tops of my feet were not immune to the bone deep pain. At first, it was just an occasional pain. Annoying, but usually easily explained away by things like working too hard, moving heavy objects or simply not getting enough rest. Then it got worse; much worse. I was tested for arthritis, Lupus and everything in between. They diagnosed me with bursitis, at one point. They thought that perhaps my sciatica was getting worse. Nope, it wasn’t anything like that. Finally, after almost a year, the doctor gave me a diagnosis of fibromyalgia. I had heard of it, of course, and thought I knew what it was. At least it explained the pains in my legs. What I didn’t know, and discovered as I began doing research, is that fibromyalgia isn’t just about the pain. Things that had been happening to me, things I blamed on other things, turned out to all be a part of this new and mysterious “disease”.
People refer to it as disease because, basically, that is what it is. By definition, a disease refers to conditions that cause “pain, dysfunction, distress, social problems, or death to the person afflicted.” While fibromyalgia won’t kill you, it can make you wish you were. The pain can be so debilitating that you simply cannot function. Things as simple doing the dishes or grocery shopping can be so painful, you can’t move afterwards. Not only that, it interferes with living your day to day life. I have gotten to the point where I have to write everything down. I found that I was forgetting things that, before, I never even thought twice about. Little things, like needing to buy a book for my son for school or picking up the dry cleaning or putting gas in the car. At first, I laughed about it, thinking I was just starting to get old. As the “fibro fog” got worse, I quit laughing so much. So, I began writing everything down so I wouldn’t forget it. That, in and of itself, wasn’t such a big deal. But it was just one more thing in a long list of things that seemed to be going wrong with me.
After talking with others that suffer from this disease, I have discovered that I’m actually pretty lucky – at least, I see it that way. My pain is pretty much localized in my legs, whereas many others experience pain all over their bodies. In fact, there are 18 tender points that characterize this affliction. Doctors used to look for at least 11 of these points before diagnosing you. Now, these are simply used to identify the most common areas of pain. And the pain doesn’t stay in one place, either. In my case, it travels to different parts of my legs, mostly my knees and thighs, occasionally my ankles, shins or even my hips. And it’s not uncommon for this pain to radiate, meaning it starts in one spot and spreads outwards.
The good news is fibromyalgia does not cause any permanent joint damage, even though it feels like it may be in your joints. And you can manage the pain with different types of treatments, not all of which include medication, which makes me very happy. What makes me unhappy is that there just isn’t much known about this disease, what causes it, or even the best treatments (as everyone is different). I’m just beginning this journey, but I’d like to take you along with me. And if you suffer from this, let me know how you deal with it. I have a lot to learn about living with this.
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