How to describe fibromyalgia pain

How to describe fibromyalgia pain: a close up photo of a person massaging their neck in pain from fibromyalgia

"Remember that everyone experiences fibromyalgia pain differently, so it's important to personalize your description based on your own symptoms." | Photo Credit:© / Adobe Stock

How to describe fibromyalgia pain

Explaining fibromyalgia pain to loved ones: a guide

As someone living with fibromyalgia, I can tell you that  describing the pain isn't as easy as saying, "it hurts." It's like trying to explain a color to someone who's never seen it or a sound to someone who's never heard it. The pain we feel isn't just physical - it's a complex symphony of sensations that can be overwhelming at times. 

"When I explain fibromyalgia pain to my friends, I often find myself lost for words. How can I make them understand the constant, unending fatigue, the sharp, unexpected jolts of pain, or the dull, relentless ache that never seems to go away?"

I remember one time, I was at a family gathering. My cousin asked me why I seemed so out of it, why I wasn't my usual lively self. I struggled to find the right words. I said, "Imagine you've just run a marathon. Your body is completely spent, aching with fatigue. Now, imagine feeling like that all the time, even when you've done nothing more strenuous than making a cup of tea." 

That's fibromyalgia pain. It's a marathon without a finish line, a battle without a victory. It is a challenge to describe because it is so much more than just pain. It is a persistent, all-encompassing experience that defines every moment of our lives.

But how can we express the full spectrum of fibromyalgia pain to those who don't live it? This article aims to provide you with the language, expressions, and metaphors that can help you articulate your personal experience of fibromyalgia pain. With this, you can help your partner, family members, friends, and co-workers not only understand your physical discomfort but also the emotional, mental, and social repercussions of living with fibromyalgia.

Consider this your guide to communicating the uncommunicable, to making the invisible visible, and to fostering understanding in your personal and professional relationships.

Before we discuss how to describe fibromyalgia pain, let's remind ourselves of some key facts about fibromyalgia pain:

Key facts about fibromyalgia pain

  • Fibromyalgia is a chronic pain condition that affects an estimated 10 million people in the United States [CDC]. 
  • Fibromyalgia patients have a lower pain threshold compared to healthy individuals. Fibromyalgia pain is often described as a deep, dull ache that is widespread and persistent [National Library of Medicine].  
  • Fibromyalgia pain can be accompanied by other symptoms, including fatigue, sleep disturbances, and mood changes [Mayo Clinic].
  • Fibromyalgia pain can vary in intensity and location, and can be triggered by physical or emotional stress. It is often difficult to diagnose, and there is no cure for the condition.  [Mayo Clinic]. 
  • Fibromyalgia pain can be managed with a combination of medication, exercise, and lifestyle changes [National Library of Medicine]. 
  • Fibromyalgia pain can have a significant impact on a person's quality of life, including their ability to work and participate in daily activities [National Library of Medicine]. 
  • Fibromyalgia patients experience pain in at least 11 of 18 specific tender points on the body [Creaky Joints]. 
  • Fibromyalgia patients often experience fatigue, sleep disturbances, and cognitive difficulties in addition to pain [National Library of Medicine].

How does fibromyalgia pain differ from other types of pain?

Knowing how to describe fibromyalgia pain begins with understanding that fibromyalgia pain differs from other types of pain in several ways. Unlike acute pain, which is a normal sensation triggered by the nervous system to alert you to possible injury, fibromyalgia pain is chronic and often widespread. It is not caused by a specific injury or illness and can be difficult to pinpoint. Additionally, fibromyalgia pain is often described as a deep, dull ache that is accompanied by stiffness and tenderness in specific areas of the body known as tender points.

Another way that fibromyalgia pain differs from other types of pain is that it can be unpredictable and fluctuate in intensity. Some days, a person with fibromyalgia may experience mild pain that is manageable, while other days the pain may be so severe that it interferes with daily activities. This can make it challenging for individuals with fibromyalgia to plan and participate in activities, as they never know when their pain may flare up.

Fibromyalgia pain can also be accompanied by a range of other symptoms, such as fatigue, sleep disturbances, headaches, and cognitive difficulties. These symptoms can further complicate a person's ability to manage their pain and communicate it to others.

Finally, fibromyalgia pain is often misunderstood by others who do not have the condition. 

Because it is an invisible illness, meaning that there are no outward signs of pain or disability, some people may doubt the severity of the pain or dismiss it altogether. This can be frustrating and isolating for individuals with fibromyalgia, who may feel like their pain is not being taken seriously.

How to explain fibromyalgia pain to your partner

Explaining the pain of fibromyalgia to a partner can be challenging since it is a pain that is often elusive and difficult to articulate. Imagine waking up feeling as if you've spent the entire night running a marathon, only to realize that your day has just begun. That's a glimpse into what fibromyalgia feels like. 

To help your partner understand, you might want to use vivid, relatable analogies. Here are some examples: 

  • Like wearing a suit of discomfort: Visualize waking up in a suit that's much too tight, causing discomfort with every move. That's fibromyalgia - a constant, suffocating discomfort that doesn't subside.
  • Like a dull toothache: Remember that dull, throbbing pain of a toothache that doesn't seem to go away? That's what fibromyalgia can feel like, but imagine it spreading across your entire body.
  • Like being wrapped in barbed wire: Some describe it as the sensation of being wrapped in barbed wire, where the slightest movement can cause sharp, stinging pain.

I find it's also helpful to discuss the variability of fibromyalgia pain. Your partner must understand that your pain levels can fluctuate from day to day, and even hour to hour. 

Pain is often at its worst upon waking and may ease slightly as the day progresses. However, any increase in activity or stress can also lead to a flare-up, making the pain more intense.

Lastly, using a pain scale can be beneficial. A pain scale is a tool that doctors use to help assess the severity of pain. By using a pain scale, you can communicate your pain in a quantifiable way that your partner can understand. 

Pain Level Description
1-3 Pain is present but manageable and doesn't interrupt daily activities.
4-6 Pain is discomforting and can disrupt concentration, but still manageable.
7-10 Pain is severe, hinders daily activities and requires rest or medical attention.

Remember, communication is key. The more you talk about your experience with fibromyalgia, the better your partner will be able to understand and support you.

How to explain fibromyalgia pain to your children?

Initiating a conversation about fibromyalgia pain with your children may feel like an uphill task. However, it is a crucial one which can help to create an understanding and supportive environment for you. Communicating about your pain not only fosters empathy but also aids in maintaining a harmonious relationship within the family. It also encourgaes your children to be open about pain that the may experience in their lives. The method of explanation, however, may vary depending on the age of your children. 

Explain fibromyalgia pain to young children

When it comes to young children, simplicity is key. Their developing minds may struggle to comprehend complex medical terminologies or concepts. So, it's best to use comparisons or analogies they can easily relate to. 

  • Analogy: You could explain that just like sometimes they might get a boo-boo that hurts, mommy or daddy has something similar that makes their whole body hurt.
  • Visual Support: Using visual aids such as pictures or diagrams can help to convey your message more effectively.
  • Sensitivity: Remember to reassure your child that your pain is not their fault and that it is okay for them to ask questions.

Explain fibromyalgia pain to teenage children

With teenagers, you can delve more into the particulars of fibromyalgia. They are capable of understanding more abstract concepts and are likely to appreciate your honesty and openness. 

  • Explanation: Explain fibromyalgia as a condition that causes you to feel pain in various parts of your body. It's like having a headache or a stomachache, but it affects more parts and lasts much longer.
  • Support: Encourage them to research on their own and involve them in your journey, let them accompany you to doctors' appointments if they wish.
  • Reassurance: Assure them that while fibromyalgia is a chronic condition, it doesn't shorten life expectancy and can be managed with proper treatment and lifestyle changes.

Remember, the goal is not to burden your children with your pain, but to help them understand why you may have good days and bad days. The more they understand, the more supportive they can be.

Age Group Method of Explanation
Young Children Use simple analogies and visual aids.
Teenagers Provide detailed explanations and encourage self-research.

How to explain fibromyalgia pain to family members: parents and siblings?

Explaining fibromyalgia pain to family members can feel like an arduous task, but it's crucial for fostering understanding and empathy. The approach you take might differ depending on the family member you're speaking to. For instance, the way you'd explain your pain to your parents might not be the same way you'd explain it to your siblings. It's all about finding a balance that suits both your comfort level and their understanding. 

When it comes to your parents, let's consider a more formal and comprehensive approach. You might want to: 

  1. Provide them with basic information about fibromyalgia. This could include its symptoms, causes, and effects on your daily life.
  2. Share your personal experiences. Telling them how you feel on a daily basis can help them understand the extent of your pain.
  3. Discuss your treatment plan. Let them know what steps you're taking to manage your condition.

Imagine explaining to your parents, "Fibromyalgia is a chronic condition that causes widespread pain, fatigue, and cognitive difficulties. It's like waking up every morning with the flu, combined with the ache of an intense workout from the day before. Despite this, I'm working closely with my doctor to manage my symptoms."

On the other hand, when explaining your fibromyalgia pain to your siblings, you might want to adopt a more conversational and relatable tone. Here's how you can go about it: 

  1. Make comparisons to experiences they can relate to. This can help them understand the intensity and persistence of your pain.
  2. Encourage questions. They might not understand everything at once, so let them know it's okay to ask questions.
  3. Share your coping mechanisms. If you are comfortable, you can share how you deal with the pain. This can help them provide support during tough times.

You could say to your siblings, “You know the feeling when you're really tired, but you can't sleep? Or the soreness after a long workout? That's what fibromyalgia feels like, but it doesn't go away. But don't worry, I've found ways to cope, and I'm always open to talking about it if you have questions.”

How to explain fibromyalgia pain to your colleagues

If you're like me, you've probably found yourself in the awkward position of trying to explain your fibromyalgia pain to your colleagues. It's not always easy to convey the intensity and the pervasive nature of the pain to people who've never experienced it. 

Imagine the worst flu you've ever had. The aching, the fatigue, the feeling that your entire body is under siege. Now imagine feeling that way every single day, with no end in sight. That's what living with fibromyalgia can be like. 

It's not 'just a little pain'. It's a chronic condition that can be debilitating, and it's often accompanied by other issues such as sleep disorders, cognitive difficulties, and emotional distress. Being open about this with your colleagues can help them understand and empathize with your situation.

Here are a few ways you can describe your fibromyalgia pain to your colleagues: 

  • Constant dull ache: This is a pain that's always there, a persistent ache that permeates your entire body. It's like a background noise that never goes away.
  • Flare-ups: There are times when the pain intensifies, often triggered by stress or physical exertion. These flare-ups can be so severe that they're incapacitating.
  • Morning stiffness: Waking up in the morning can be particularly challenging. Your body feels heavy and stiff, making it difficult to get out of bed and start your day.
  • Fatigue: This is not just ordinary tiredness. It's a deep, pervasive fatigue that can make even simple tasks seem overwhelming.

    Remember, everyone's experience with fibromyalgia is different. The key is to be honest and straightforward about your symptoms and how they affect your day-to-day life. Here's a simple table to help you articulate your pain: 

    Pain Type Description
    Constant dull ache A persistent, all-over body ache that's always present.
    Flare-ups Periods of intense pain that can be incapacitating.
    Morning stiffness A feeling of heaviness and stiffness upon waking, making it hard to get out of bed.
    Fatigue A deep, pervasive fatigue that can make even simple tasks seem overwhelming.

    It's important to remember that while fibromyalgia is not visible, it is very real. Your pain is valid, and it's okay to ask for the understanding and support you need.

Is fibromyalgia pain similar to arthritis pain?

As a fibromyalgia patient, when trying to describe fibromyalgia pain you may frequently encounter comparisons between your pain and that of arthritis. While on the surface, both conditions share similarities, such as chronic pain and fatigue, in truth, they are fundamentally different. 

Fibromyalgia, as we know, is characterized by widespread muscle pain and tenderness, often associated with other symptoms such as fatigue, sleep disturbances, and memory issues. Unlike arthritis, it is not an inflammatory condition and does not cause damage to the joints, muscles, or other tissues. 

Note: Fibromyalgia doesn’t cause joint deformations or damage. However, the constant discomfort and fatigue can significantly affect your quality of life.

On the other hand, arthritis is a broad term that covers over 100 different disorders affecting the joints. Most forms of arthritis are inflammatory and result in swollen, tender joints that can eventually sustain damage. Additionally, certain types of arthritis can affect other organs in the body. 

Can fibromyalgia pain be described as burning or stabbing?

Describing the pain of fibromyalgia can be as complex as the condition itself. Indeed, those living with fibromyalgia often describe their pain in a variety of terms, ranging from a dull ache to a sharp, stabbing sensation. Moreover, some individuals have likened their fibromyalgia pain to a burning sensation. While these descriptors might differ between individuals, they all underscore the pervasive and often disruptive nature of fibromyalgia pain. 

"I frequently tell people it's like a thousand tiny needles pricking my skin, or like a slow, constant burn. On the worst days, it's like someone is repeatedly stabbing me. It's a pain that's both relentless and unpredictable."

The following table provides a range of descriptors often used by individuals with fibromyalgia to describe their pain. Though it's important to remember that this is not an exhaustive list, as the experience of pain can be very personal and subjective. 

Sensation Description
Burning A feeling of heat or a sensation similar to a sunburn.
Stabbing A sharp, intense pain that can feel like a knife or a needle.
Aching A constant, dull pain that may be widespread.
Throbbing A regular pulsating pain that can range in severity.

As you can see, the descriptors vary widely, reflecting the complex pain experience associated with fibromyalgia. So, if you're trying to explain your fibromyalgia pain to someone else, don't be discouraged if you struggle to find the right words. Remember, your experience is unique and valid, and it's okay if it doesn't fit neatly into a single descriptor or category.

In conclusion, fibromyalgia pain is a deeply personal and unique experience. The wide range of descriptors we've discussed just goes to show how complex and varied the pain can be. Remember, it's perfectly okay to struggle to find the right words to describe your pain. Your experience is valid and significant, and you don't need to fit it neatly into a single descriptor or category. Never be discouraged in your quest to help others understand your pain. It might be challenging, but with patience and perseverance, those around you can begin to grasp what you're going through.

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Article by
Jessica White

Jessica White, the author of "How to describe fibromyalgia pain," holds a MA in feminist literature, and an MBA. Jessica lives with fibromyalgia and chronic fatigue syndrome (ME/CFS), as well as a chronic neurological condition. She is a Human Resources and DEI management consultant and content writer.