Reflecting on the Past, Present and Future This Fibromyalgia Awareness Month

May is Fibromyalgia Awareness Month, and as someone who lives with this complicated condition, I thought it would be nice to share with you some of the history behind it — including its diagnosis and treatments.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

Fibromyalgia can be a debilitating condition for those who struggle with it, but it is also difficult for others to understand because its symptoms are often self-reported by those who have the condition. Fibromyalgia is classified as a neurological condition that affects a person’s sensory processing system. Some mistakenly see fibromyalgia as a mental illness because some of its symptoms can include depression and anxiety, but it is not categorized in this way.
Some of the most common fibromyalgia symptoms are widespread pain, stiffness, headaches/migraines, fatigue, sleep problems, and problems with thinking/memory/concentration. I personally experience gastrointestinal symptoms as well, such as intense nausea, which affects my day-to-day life on top of the pain and fatigue I experience.

But despite the information that we currently have on the condition, fibromyalgia itself is a fairly new diagnosis. For many years widespread pain was identified as rheumatism. That was changed to fibrositis in 1904. The term fibromyalgia wasn’t coined until 1976, following the description of widespread pain and tender points by Hugh A. Smythe and Harvey Moldofsky in 1972. The first clinical study of fibromyalgia was published in 1981, and in 1984 it was released that fibromyalgia often intersects with other conditions, such as major depression, panic disorder, chronic fatigue syndrome, irritable bowel syndrome, and chronic migraines. However, approved drugs for fibromyalgia weren’t introduced until 1986, and the criteria for diagnosing the disorder wasn’t published until 1990.

Lyrica was the first medication approved by the FDA for the treatment of fibromyalgia, and since then two more medications have been approved — Cymbalta and Savella — which are both antidepressants. However, many professionals use other medications off-label, meaning that they can be used in the treatment of fibromyalgia but that they weren’t created specifically for this purpose. For example, I am currently on gabapentin for my fibromyalgia pain as well as for anxiety and sleep.

While antidepressants, muscle relaxants, anti-inflammatory medications, and nerve pain medications are frequently used in the treatment of fibromyalgia, alternative therapies have also been introduced, such as relaxation techniques, physical exercise, cognitive behavioral therapy, stretching, and hydrotherapy. Since depression and anxiety are also symptoms of fibromyalgia, and mental illnesses often occur alongside this condition, therapy is used to help individuals learn coping skills to increase relaxation and manage mood alongside managing pain.

Support groups have also been shown to be effective in the treatment of fibromyalgia to allow patients to create connections with those who relate. I have found that online support groups for patients with fibromyalgia have helped me to connect to others who understand, since it is so difficult to describe what I am going through to the people in my immediate life. Validating what a person is experiencing is a huge part of fibromyalgia treatment, and understanding the varied presentations of this disorder is key.

The possible causes of fibromyalgia are varied and relatively unknown, but they can include psychological stress, genetics, physical trauma, illness and injury. Due to the relative “newness” of fibromyalgia, professionals are frequently learning more about the condition and adding to the collective knowledge of its causes and treatments. While traditional medication was originally the focal point of fibromyalgia treatment, alternative treatments such as medical marijuana and yoga have sprouted with favorable results in the fibromyalgia community as well. Pain management is the main focal point of fibromyalgia treatment, and holistic therapies appear to be the most effective in improving the quality of life of those who live with fibromyalgia.

While fibromyalgia isn’t a mental illness — as it is a neurological disorder — it consists of aspects of both physical and mental conditions. Because of the variability of symptoms amongst patients, some find it hard to understand the illness and validate it amongst patients. However, it is important to understand that fibromyalgia presents in every patient differently, and while many of the symptoms are often self-reported, that doesn’t make the illness any less valid.

As a fibromyalgia patient myself, I often try to spread awareness about how debilitating the pain, fatigue, depression, and anxiety I experience is to help validate the experience of others, while revealing how I often don’t feel validated by others based on the sometimes “invisibility” of this illness. Even though I have been living with this illness for many years, I am still trying to learn as much as I can about it and keep spreading added information on treatments and symptoms when they arise. Reflecting on how far we have come with the diagnosis of fibromyalgia and its treatments is promising, but I also want to remind you that this illness is relatively new, and we still have a long way to go in increasing the quality of life of those who live with fibromyalgia.

What I hope you take away from this article is a better understanding of what fibromyalgia is, how it affects patients, and how treatments are ever-evolving. If you also have fibromyalgia, I hope that my article has helped you to learn more about your illness and to help you feel seen and heard. We can celebrate how far fibromyalgia research and treatment has come, while also understanding that we still have a long way to go. All I ask is that you listen to the experiences of those with fibromyalgia and validate their experiences. And if you have fibromyalgia, I hope you take the time to ensure that you are practicing self-care. This illness is often debilitating, but there is power in community. I hope I can be a helping hand in expanding this community to increase awareness further as well. We all deserve to be heard.