Fibromyalgia is such an unknown word it gets a little red line under it when you type it into a word processor, even though over 5 million people live with it in the US each year. For many years and even now, it was believed to not be a real condition by some people. As someone who has watched one of the closest people in my life suffer with it for over a decade, I can tell you, it is real to the person suffering through it.
According to the Mayo Clinic, “fibromyalgia is a disorder characterized by widespread musculoskeletal pain.” In other words, fibromyalgia is a disorder that causes pain at all hours of the day and night, continuously. Imagine being in pain every moment of your life, occasionally accompanied by random incidents of intense pain that can leave you on the floor crying. And that’s after you find a good doctor who believes something is actually wrong and is willing to work with you on a treatment plan.
There are other symptoms of fibromyalgia that are less known, but are sometimes the worse. One such symptom is commonly called “fibro fog,” a strange form of memory loss that can cause severe difficulty with short term memory, including losing a train of thought in the middle of conversation. During an episode of “fibro fog,” it can be difficult to find the correct word for objects, and can often come with short term incidents of physical disorientation.
There is no set treatment plan for fibromyalgia. Every person has to come up with a unique pain management plan based on their symptoms and the severity, and many doctors just don’t know enough about fibromyalgia to treat it correctly. There is no cure, or even a little pill to make it better. It is chronic, meaning it will effect you for your entire life.
My mother has fibromyalgia, and many days she is in so much pain she cannot leave the house. The pain medicines help, but there is only so much they can do, and doctors are hesitant to give out pain medicine, particularly controlled substances, especially for a disorder they do not understand. It is also often treated with anti-anxiety medications, as it appears to share some of the same genetic markers as anxiety and depression do, though many people with fibromyalgia get depression or anxiety after the fact, because it’s depressing to be in pain all the time. Both of these medications can make the difference between being bedridden and being able to have a relatively normal life with jobs and relationships.
I have watched someone I love become dependent upon these medications in order to function, and her body has become dependent too. Pain medicine can do great things for people, but if you have been on it for a long time, getting off of it is almost impossible. She once had to go off of all of these medicines at once, due to the fact that she were locked away by someone else who did not understand or care that she needed these medicines in order to function. I watched her become more and more miserable, cold, clammy, and in pain, until she could not move or leave a chair. She could not take care of herself, or me. I was 12 and the only person who cared for her at the women’s shelter we lived in at the time. The pain was literally paralyzing for her. Fibromyalgia is not fatal, but to my 12-year-old mind, it might as well have been, for what happened to my mother was like watching someone die. Eventually she got her medication back, and we no longer live in a women’s shelter, but the experience taught me a lot about how fibromyalgia can affect someone, and how much the medicine helped my mother to function.
Fibromyalgia can cause anxiety, depression, insomnia, and a host of other problems. Many of these things can be treated with medication, and many people with fibromyalgia can live a perfectly normal life. You are several times more likely to get this if you have a family member with the disorder, though it is currently unknown whether this is caused by heredity or some factor related to a shared environment. Fibromyalgia is not something you should self-diagnose, as any form of treatment requires a diagnosis from a doctor. 80-90 percent of the people affected are women. Fibromyalgia can be caused by a traumatic event, such as a car accident, but it can also just randomly appear.
The best thing you can do for someone you know with fibromyalgia is to listen. Many people with fibromyalgia feel that their condition isolates them from society, since they are often too tired to leave the house. Your support can help many of the side effect of fibromyalgia, such as depression. Do not judge them, just listen and try to understand. This can be harder than you think, but do your best. To all the people out there with fibro reading this, don’t stop fighting.