Let me preface this by saying that I'm going to tell you about fibromyalgia as I have experienced it. It seems to be different for each person that has it, and you shouldn't take anything I say as the absolute truth for another fibromyalgiac. We all have different limits, different methods of coping, and different things work for each of us.
Fibromyalgia can be called by its full name, or any number of variations. I often call it fibro, or FM, or FMS. The "S" is for "syndrome," though it's rarely called fibromyalgia syndrome anymore. People with fibromyalgia don't have a definitive name. There are fibromyalgiac and fibromite, but both names are pretty bulky.
Okay, so, what is fibromyalgia?
Honestly, nobody knows. It's been blamed on overactive nerves, dysfunctional muscles, depression, laziness, and who knows what else. Research is being conducted, but the medical community doesn't know what fibromyalgia is or why it starts. Oftentimes it begins after an injury, surgery, or traumatic experience. For instance, my doctors suspect I developed it either because of the stress of being away at college or because of a concussion I sustained in the winter of 2007/2008. I believe I developed symptoms before the concussion, but it's hard to tell.
There's no blood test for FM, only a pressure point test. Basically, the doctor presses gently on these points and if you are in a disproportionate amount of pain in enough of them, you have fibromyalgia. When I say disproportionate, I mean that you are practically screaming when pressure is applied to these points that you didn't even know you had. Most people will feel them slightly, but fibromyalgiacs feel them acutely. When I first had symptoms, I could tell you where every one of those spots was on my body because they throbbed constantly.
Back in those days I had flares often. A flare up is just what you would expect - a period of time in which the symptoms are much worse. Some symptoms only appear during flares. For some fibromyalgiacs, flares are related to stress, the weather, or over-exercise, but most of the time they happen for no apparent reason.
There are three drugs that have been FDA-approved to treat fibro. The first was Cymbalta, which is an anti-depressant. The other two are Lyrica, an anti-seizure drug, and Savella, which is similar to anti-depressants. Cymbalta made me violently ill and Lyrica made me depressed and anxious. Savella is the only one that I have been able to tolerate.
Drugs can be great treatments but also carry risks. Fibromyalgiacs are often sensitive to medications and have adverse reactions. We tend to keep trying different medications until we find one that we can tolerate. We usually have the weird reactions, too. Savella, for instance, gives me vivid dreams. I’ve never dreamed so actively in my life.
Aside from those three drugs, there are a lot of others that are prescribed to fibromyalgiacs. Low-dose anti-depressants are a favorite treatment. I tried Lexapro and Wellbutrin and neither worked out for me. I have Restoril to help me sleep because I have problems sleeping, like many other FM patients. I had Provigil for a long time, which I took in the morning to energize me. It made me too jittery, though, so I stopped.
Many fibromyalgiacs are also prescribed narcotic pain relievers, like Vicodin, because over-the-counter stuff like Tylenol doesn’t touch fibromyalgia. I was given Percocet after my gallbladder surgery in January and Tramadol the following month when I had a kidney stone. I am not ashamed to admit that I saved the extras to take when I had a bad day with fibro. Now I have a prescription for Tramadol for breakthrough pain, which is great. I haven’t taken it yet, but it’s only for when I really need help and I don’t expect to take it more than a couple of days a month.
The hardest part of fibromyalgia is adjusting to being a sick person. We’re not cancer patients, unless by coincidence, but we are still sick. It was really, really hard to give up things that I loved because I couldn’t do them anymore. I had to recognize my limits and come to terms with them. The worst part is not knowing if I will ever be able to fulfill my dream of being an archaeologist. Fibromyalgia ruins careers, educations, and relationships. I am lucky to have gotten it early in life in that respect – I have the opportunity to build my life around it instead of trying to make it fit into the life I already have. A big problem is that fibromyalgiacs don’t look sick. On the outside we appear perfectly healthy, so it is often hard for the people around us to appreciate the difficulties we have. My family took awhile to adjust to the idea that I was not just lazy, and for some people their friends and family never give up on that idea.
It’s also been hard, especially with school, to adjust to the mental problems. Fibro comes with a symptom commonly called “fibro fog.” We are forgetful and often have a hard time focusing on things and remembering where we put items. I’ve adjusted pretty well to the forgetfulness, but I still have to work around the times that I can’t focus. There’s really nothing I can do about it.
As fibromyalgia becomes more widely recognized, more research is being done and there’s hope that better treatments will be developed, or that we’ll at least learn more about the condition. I hope that one day we’ll get my medications right and I’ll get to live a normal life again, but I know that it might never happen. But still, it’s possible, and I’m determined to be optimistic.
