How to describe fibromyalgia symptoms

When talking about a disease, there are signs and symptoms. A sign is something that can be observed, like a skin rash, a cough, a low blood cell count on a test, or a tumor visible on an X-ray.

In contrast, symptoms are what is felt by the person experiencing an illness or condition. The itch from the skin rash. The pain in the airways that accompanies the cough. The tiredness from low red blood cells. The pain caused by a tumor.

While they cannot be fully observed by others, symptoms have a very real effect on a person’s life.

Fibromyalgia is a condition made up almost entirely of symptoms. It has few if any signs. It is sometimes described as “an invisible disease.”

What is fibromyalgia and what causes it?

The core symptoms of fibromyalgia are widespread pain throughout the body, fatigue, and problems with sleep. It also causes mood changes and difficulty with memory and concentration. Symptoms can be present most of the time or come and go in episodes called flare-ups.

While the exact cause is unknown, research suggests fibromyalgia occurs due to an underlying anomaly in how the nervous system processes pain signals, causing the body to be more sensitive to pain and feel pain more strongly.

Because the symptoms of fibromyalgia cannot be fully observed by a healthcare provider or reliably measured with a test, how a person describes what they are experiencing is critical information.

If you’re living with fibromyalgia, learning to describe your symptoms clearly will help you and your healthcare providers.

How you describe symptoms can make a difference

There is no single test that can identify and confirm fibromyalgia, and a diagnosis is based on symptoms, medical history, a physical exam, and by ruling out other conditions that could explain the symptoms. Tests that look for other conditions and identify coexisting conditions (which are common with fibromyalgia) are an important part of this process.

One important diagnostic requirement is that symptoms must be present for at least 3 months.

Providers often use scoring surveys to assess symptoms. One survey measures how many areas of the body are in pain. Another is used to rate the severity of fatigue, sleep problems, and difficulty thinking. Both of these tools depend on a person being able to report what they feel and where they feel it.

In other words, accurate descriptions will be part of the diagnostic process, and your ability to provide these will help guide treatment after a diagnosis.

Putting invisible symptoms into words

For many people, pain, fatigue, brain fog, and changes in mood can be difficult to describe. With fibromyalgia, these symptoms fluctuate and overlap, adding to the challenge. These strategies may help:

• Decide on adjectives to describe the pain. Common descriptive words include aching, dull, burning, sharp, stabbing, or shooting. Think about whether the pain compares to another type of pain you have experienced, such as muscle soreness, an illness like the flu, or an injury.
• Note where and when it hurts. Note which areas of the body pain occurs, if pain is worse at certain times of day or during/after certain activities, and if the pain moves around throughout the day or from one day to another.
• Describe fatigue and its impact. Know what words best describe your fatigue—daytime sleepiness, lack of physical energy, becoming tired easily, lack of motivation. Be ready to talk about when it occurs, how often, and what parts of your life are impacted, such as work, relationships, meal prep, or responsibilities.
• Give examples of "fibro fog.” Cognitive symptoms are sometimes called “fibro fog.” Specifics include difficulty concentrating on specific tasks, forgetting words, forgetting things you just heard, difficulty following a conversation, or lack of alertness.
• Be specific about sleep disturbances. Do you wake frequently during the night, have difficulty falling asleep due to pain, have restless legs while lying down, or sleep enough but do not feel rested in the morning?
• Describe your moods. Anxiety, low moods, and other psychiatric symptoms are common, and these are an important topic. Fibromyalgia often coexists with mental health conditions, and mental health is a key focus of treatment.

Keep a symptom journal (if you aren’t already)

Tracking your symptoms with a journal helps you better describe what you are experiencing. Trying to summarize weeks or months by memory is difficult and often unreliable.

Use your journal to describe both good days and bad days, how symptoms are impacting your daily life, and anything that seems to make symptoms better or worse, like certain activities, weather, stress, menstruation. Keep track of sleep and moods. Also keep track of how treatment is going and any difficulties with following a treatment plan.

Keeping a journal does take time and energy. Try to keep entries short, something that can be accomplished in a few minutes each day. Entries with a low time/energy cost are easier to stay consistent with.

Before your appointment, review what you’ve recorded. Prioritize what you want to discuss with your healthcare provider. Share what you’ve recorded.

Above all, be honest, especially about how symptoms are affecting your daily functioning and quality of life. Healthcare providers will be your best source of information, and they rely on the information you share to guide diagnosis and treatment.