Fibromyalgea: The Invisible Illness

Tanita Cronk| Creative Writing Coordinator

For years, I wondered what was wrong with me. Family and friends chastised me, telling me that it was all in my head, or that I was just looking for attention. I was dubbed a whiner and complainer and told that I was just imagining the pain. Eventually I stopped talking about it. I stopped telling people about the intense pain that came for no reason. That even the simplest task like holding a pencil or standing up made my body feel as if it was being tortured.

Many times, when I would go to a doctor I would be told that I was exaggerating. I would be scoffed at and accused of trying to score pain pills. Most of the time I would be told that it was nothing and that it would go away if I just took some ibuprofen. One older doctor even told me that it was all in my head and that if I saw a psychiatrist it would go away.

In 2010, I finally had enough and decided to once again seek out a doctor and I hoped that he would believe me. Fortunately, Dr. Shah was not that kind of doctor. He believed me. He nodded and listened as I told him about the agonizing pain in my lower back that ran down my hip, wrapped itself around my thigh like a boa constrictor, and buried itself in my groin. I watched him quietly as he studied my chart and asked me about the dozens of other times I had tried to tell doctors that I was in pain. Dr. Shah told me that he believed that I was in pain, and that there is even a name for it: fibromyalgia.

The term, fibromyalgia, broken down into its parts are the Latin fibra (fiber), the Greek words myo (muscle), and algos (pain). The condition which was first used in a scientific magazine in 1981, is still considered to be relatively new. Some older doctors still do not believe that the condition exists and believe it to be a psychological condition in which the pain is all in the patients head or made up. There are also other doctors who believe that patients such as myself who complain about this type of pain are simply drug addicts looking to score pain pills.

It can be a long and discouraging journey searching for a doctor who will listen and be helpful. It took me six years of dealing with constant everyday pains ranging from aches and pain like the kind you get when you have the flu to intense radiating pain that make it hard to breathe let alone stand. I told Dr. Shah everything as he listened intently and then he made an appointment for me with a rheumatologist and later that week I had an official diagnosis of fibromyalgia.

I was so relieved to put a name to this mysterious pain that I actually hugged the doctor. He gave me some recommendations and suggested that I keep in regular contact with Dr. Shah. That day, I went home and began reading anything I could find on the subject. I learned so much more than I intended, but being able to understand what I was going through made it less scary.

One night, as I was lying in bed, I noticed that I was having trouble swallowing. As I tried to take a sip of water, I felt a dribble down the side of my lip and felt like there was a rock sitting in my throat. I tried to swallow and found that I had to force my throat to work. This lasted for about five minutes and then it was gone. I chalked it up to a mystery and shrugged it off.

Then it happened again a few weeks later after I laid down to sleep. The rock was back. This time, because I had been trying to fall asleep, it felt bigger and more alarming. I forced myself to swallow a couple of times and it went away. But fibro wasn’t done with me that night. My body felt like it was under the weight of a large stone. My skin felt like it was on fire. As if someone had dipped me in a hot lava bath. The t-shirt and shorts I was wearing felt like they were made of barbed wire scraping at my skin and tearing at my flesh with its sharp teeth. My wedding ring felt as if had tightened itself around my finger, making the tips of my fingers feel numb. It was a restless night, I probably got about two hours of sleep. I needed to understand what was happening.

Fibromyalgia is the medically unexplained phenomenon that is characterized by widespread pain and a heightened and painful response to pressure. Roughly six to twelve million people suffer from this debilitating illness. No one knows what causes fibromyalgia. Some doctors and researchers believe that it may be in the central nervous system. As of 2012, the American Chronic Pain Association found that one in three people have fibromyalgia. However, researchers still do not understand this illness.

Most people think that fibromyalgia is simply aches and pains. Like a dull headache or a scrapped knee that can be fixed with Tylenol and a band aid. But fibromyalgia is more than that. Besides the chronic pain, there are lesser known symptoms that most people suffer from on a daily basis like debilitating fatigue, sleep disturbances, joint stiffness, difficulty swallowing (like I was experiencing), bowel and bladder problems, numbness and tingling in the extremities, and cognitive dysfunction also known as fibro fog.

Cognitive dysfunction or “fibro fog” is the “the loss of intellectual functions such as thinking, remembering, and reasoning of sufficient severity to interfere with daily functioning.” This means that sufferers often have: memory problems like forgetting about upcoming exams, reasoning like difficulty making decisions and problem solving, and sometimes it can be hard to think at all.

Many times, I have stopped mid-sentence because my mind had become a total blank and I could not remember what word I was going to say next. Even if it was something as simple as to tell my ten-year old to stop jumping on the couch. These symptoms make daily life for anyone suffering from this silent illness extremely difficult. The public view is very different from what those with fibromyalgia actually feel and go through. Studies show there are many differences in these two views.

For instance, in a survey completed by the American Chronic Pain Association (ACPA), the general public believes that the most difficult things for a person with fibromyalgia to do are exercise, walking consistently for twenty minutes, and lifting things. Most likely this is due to the fact that these activities are related to physical exertion.

However, if you were to ask most people with the illness what they consider to be the most difficult they would say things like driving, watching a movie, or daily household chores such as vacuuming. Because these simpler activities require more repetitive motions, put pressure on certain “pressure points” in the body that cause pain, and often aggravate other symptoms like stiffness of the joint. Everyday activities become harder for a person suffering from fibromyalgia to do.

According to Andrea Cardinal, a part-time bakery worker and mother of three children ranging in ages from 4 to 17, she finds that the hardest things to do are repetitive motions during daily chores like dishes and vacuuming, working because of the length of time she has to stand on her feet, and taking care of the children. These types of things are very common in those who suffer from fibromyalgia and make every day living difficult.

In a recent study done by the ACPA, people without fibromyalgia said they would tolerate the pain for about two to three days before seeking a doctor about the pain while those with the condition said that they suffered from symptoms for a range of seven to nine years. The pain and symptoms simply become a part of everyday life, something that one just has to deal with.

Fibromyalgia continues to be a mystery to both doctors and researchers of the illness and those who suffer from it. Even for one such as Deb Jefferson, a long-time sufferer and health care professional, she says that even though she is in the medical field; it is no consolation. The pain is still unexplainable. She says that she can maybe understand the pain a little better but as a health care professional whom has worked in hospice programs, where she helped many patients with pain management on a daily basis, it makes it even more frustrating knowing that her health care providers could do more to manage her symptoms.

Jefferson was diagnosed in 2007 with fibromyalgia. She says that one of the things she finds the hardest to deal with is obtaining pain control. “It depends on the severity and the day,” she says, “Some days it’s as severe as you can’t stand to have your clothes or blanket to touch your skin.” She also says that maintaining a positive attitude is also difficult. She is not alone. According to the Anxiety and Depression Association of America (AADA), 20 percent of all chronic pain sufferers also suffer from some form of anxiety or depression. Jefferson says, “The fibromyalgia with co-related conditions exacerbate the intensity of each condition. Therefore, it intensifies the level of pain which makes any activity of daily living difficult.”

The pain of living with fibromyalgia can be overwhelming. It is also one of the most inconsistent illness. Cardinal, who was diagnosed in 2008, agrees that the inconsistency for her is one of the hardest things to deal with. Not every day is the same. Today I will be able to run through the park with my children, run errands, and feel as if I am on top of the world. Tomorrow the simple act of getting out of bed will feel like my blood is made of needles coursing through my veins and the clothes that I am wearing are too tight, making it hard to breath. Most days it feels like there is a constant knot in my shoulder and I am waiting for someone to rip off my shoulder blade and massage it for the next two days until it goes away.

The one thing I always tell people about fibromyalgia is that it is invisible. I don’t look sick; it is not a condition you can see. You cannot look at me and tell that I have fibromyalgia because it doesn’t come with visible symptoms that would tell you that a person has this illness. Much like anxiety and depression, it is something that unless a person tells you that they have it, you would know or guess. Fibromyalgia is a silent mystery that plagues its sufferers with chronic pain. Doctors and patients alike are still trying to understand it.

Because there is no blood or other laboratory test that can help determine whether or not a person has fibromyalgia, it is one of the hardest illness to diagnose. It does not show up on an x-ray and is largely based on one’s reactions to pressure points on the body and how one feels. Fibromyalgia and its sufferers are often misunderstood.

One of the ways people can get more information on fibromyalgia to better understand family and friends that suffer from the illness is to read up on the topic at websites like theacpa.org which is the official website for The American Chronic Pain Association. Being patient and listening to your family member or friend is the best medicine for those with fibromyalgia as it is often accompanied by other disorders such as depression and anxiety.

Living with fibromyalgia is tough and makes daily activities such as going to class, walking across campus, or even just sitting and listening to a lecture much more painful and rigorous than they should be. The anxiety that washes over me at these times is sometimes unbearable and overwhelming, but with the support of my family, friends and through constant communication with my professors, I have been able to overcome some of those anxieties. There have been times when I have had a professor who didn’t understand what fibromyalgia is, but I simply took the opportunity to help them learn. It’s not apparent that I am in pain, I don’t have an illness that you can visibly see. It is up to us to raise awareness and educate people about this mysterious and invisible illness so that we can acquire more information about it and hopefully one day find the answers to the pain.