21 Ways to Describe the Unique Pain That Comes With Fibromyalgia
One of the most common symptoms people with chronic illness experience is pain – and that’s no different when it comes to fibromyalgia.
Fibro can cause a wide range of symptoms (such as brain fog, fatigue and sleep disturbances), though chronic, widespread musculoskeletal pain tends to be one of the primary, characteristic symptoms of the condition. But as those with fibro know, the pain is complex and varied, and can manifest in a number of different ways.
Contributor Jo Moss breaks down the various painful sensations fibro can cause in her insightful essay, “18 Types of Pain I Experience With Fibromyalgia.” She explains:
“Chronic pain is just one of the myriad of symptoms present within the fibromyalgia body at any one time, but for me it is the most predominant one. Pain affects every aspect of my life. I pay for every physical activity I do; even the smallest task can lead to a flare of my symptoms.
Fibromyalgia pain is unique due to its severity, complexity and multiple systems involved. There are three major types of fibromyalgia pain: hyperalgesia, allodynia and paresthesia…
But to be honest, these words mean very little to anyone who doesn’t have fibromyalgia.”
So how can fibro warriors convey what it’s like to experience the unique types of pain that come with the condition? In the past our community has gotten creative by explaining their pain through visual art, poetry and extended metaphors – but in honor of September’s Pain Awareness Month, we wanted to know: What makes fibromyalgia pain unique?
Our Mighty community shared some thoughtful responses to help others better understand what it’s like to experience fibro pain, and raise awareness of just how many forms chronic pain can take. Let us know in the comments below how you would describe your own fibro pain!
Here’s what our community shared with us:
- “With me, there are different intensities to my pain, but it is always there in some form, never faltering. Sometimes, it’s just a deep ache you feel pretty much everywhere; other times, the pinpoints will be so sensitive that even cloth brushing against the skin causes intense sharp pain. When it’s hot, your body is on fire, along with the pain, and every bit of energy is drained from you. When it’s cold, the intense stabbing in your bones can bring you to your knees. It never ends.” – Candida K.R.
- “Even my fingernails hurt.” – Carolyn M.
- “My fibromyalgia pain comes in many forms in different parts of my body, but it feels relentless, like I have my own giant invisible monster such as the one hanging over Hawkins, Indiana in the show ‘Stranger Things’ working its way inside of me causing all kinds of internal havoc.” – Sarah N.
- “Sometimes the skin on my legs feels like it’s got a sunburn. My bones will ache and throb. My joints feel hot but my hands and feet will be cold to the touch. Sometimes my myofascial pain will feel like a javelin stuck between my spine and shoulder blade that hurts so bad it hurts to breathe. Let’s not forget the unrelenting fatigue. Makes every limb feel like a lead weight.” – Diana E.P.
- “It feels like you have a bad flu and everything aches. It can feel like patches of skin that hurt with even the lightest touches.” – Jennifer H.
- “Hurt is not a big enough word, there doesn’t seem to be a big enough or strong enough word to describe the pain of fibromyalgia. When I tell people that everything hurts, I mean I cannot find a part of me that is not in pain. I don’t know what it’s like to wake up pain-free. There’s tingling, numbing, aching, throbbing, shooting, sharp, knife-like, needle-like, scratching, burning, intense, scary, I’m-going-to-pass-out pains. It’s indescribable.” – Vicki S.B.
- “It feels like I got hit by a semi and ran over a train then someone is stabbing me with needles all over my body.” – Anita A.
- “Fibro pain is a deep and penetrating pain. It’s the worst feeling and I feel this pain daily! It’s relentless and it’s impossible to find anything that relives the pain associated with fibromyalgia.” – Letia L.N.
- “Honestly, it feels like life. I’ve gotten to a point where I’m so used to the pain that when I accidentally injure myself and don’t react, people look at me funny and say, ‘didn’t that hurt?’ And I just awkwardly try to explain that it didn’t feel any worse than the pain I was already feeling.” – Chanel M.S.A.
- “I don’t think you can pinpoint the pain to one sensation. The severity of a flare-up can mean a different type of pain. Restless legs is a major one I’ve been suffering with recently. And burning skin. Neither is particularly enjoyable.” – Amanda G.
- “It feels like the world’s worst flu. Like I have a 110 degree fever. Everything aches, especially my hips and back. During a flare-up it feels like I got hit by a bus while having a 110 degree fever.” – Shayla F.W.
- “Fibromyalgia has made my body a prison. It makes my bones ache like they are breaking. It makes my muscles throb, my skin burn. It’s stabbing pains in my chest, and soreness in my joints. It’s headaches that make you think your head could burst. And none of this compares to the psychological pain of the life I have lost to this illness. Fibromyalgia is like nothing I have ever experienced, and I wouldn’t wish it on my worst enemy.” – Jayne D.
- “Fibro is like playing Russian roulette with a school bus… you never know what one thing you’ll do will cause insane pain. Which is also what makes it unique – I can get pain from eating the wrong food or hiking around the city. Unlike other pain I feel like fibro finds new ways to make you hurt and it never can be addressed because it’s everywhere.” – Devin J.
- “Feels like a vacuum is sucking my soul out little by little 24/7 all the while being pressed like a pancake and poked with a electric prod.” – Julie G.
- “Some days I feel like every inch of my body, inside and outside, is covered in bruises. The best way I can describe it is imagine if someone stuck you in a washing machine on spin cycle. Now imagine that washing machine is full of nuts and bolts!” – Amanda S.
- “Severe joint pain. Feels like hot lava fire. Tender skin that feels like my entire body is covered in bruises. Muscle spasms all the time. Deep bone pain that is piercing and aching. Agonizing pain all over my body that never goes away. Even my face hurts. Pain so bad I feel like vomiting.” – Jenny W.S.
- “It feels like my muscles have been put through a mangle – they ache, burn and feel like jelly.” – Kelly W.
- “Sometimes like being a walking bruise or like a layer of your skin has been pulled off revealing the raw skin underneath. Then there are the times when it feels like someone has beaten the hell out of you with an iron bar. Sometimes it’s shooting pains that take your breath away or dull aches you can just about ignore or it’s burning or cramps or throbbing. It’s every day, everywhere, unpredictable, unrelenting, invisible and it’s lonely.” – Sarah L.C.
- “Like my body is on fire and stiff as a board. Then it goes away but comes back full force out of the blue. Foot to head.” – Jill F.H.
- “My bones feel like they’re broken, my skin stings, there are electric shocks zapping through my hands and feet, I feel like someone has stuck a knitting needle into my ear, my guts burn but differently to indigestion, muscles feel like they’ve either solidified or frayed, and that’s just the tip of the iceberg. It’s bad enough that I’m 100 percent certain that I look like I’ve been in an horrific accident with heavy weights and acid, but I look in the mirror and there isn’t a mark on me.” – Bernie L.
- “Some days it feels like I have barbed wire wrapped around my legs. Every step, movement and slight pressure feels like the barbs are being pressed into my skin.” – Melissa C.
If you struggle with the various forms of fibromyalgia pain, you’re not alone. Check out the following stories to see how our community copes:
MORE ABOUT FIBROMYALGIA:
Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.
Photo by Naomi August on Unsplash