7 People with Fibromyalgia Describe What It Feels Like

“Invisible illnesses” can be incredibly frustrating for those who live with them. In addition to dealing with the physical symptoms of the disease, people often have to cope with the emotional stress of feeling misunderstood or doubted. They may feel isolated and lonely, and they have higher rates of depression.

One “invisible” condition is fibromyalgia. It’s a chronic pain condition with no clear cause. It was previously estimated to affect between two to four percent of people in the U.S. (new diagnostic criteria may adjust that estimate), according to the American College of Rheumatology, and is generally more common in women than men. Learn more about what fibromyalgia.

Fibromyalgia may be “invisible” on the outside, but those who have it know it’s all too real. We asked seven people with fibromyalgia to share their experiences, and here’s what they had to say.

Clothing is painful

“Even my skin hurts, so hugs can be painful and normal clothing feels like it's cutting me in half. If someone nudges me or taps me, it can feel like a sledgehammer.

“My body can't deal with extreme temperatures—if it's cold I turn to ice, if it's hot I feel like I'm on fire.”

- Sarah B. from Life in a Breakdown (United Kingdom)

Limbs on fire

“Prior to being dairy-free I had really bad flare ups. I would go to the hospital complaining that my arm felt like it was on fire or a bowling ball fell on my foot.”

- Bobbie G. (California)

Like having a sunburn slapped

“Fibromyalgia is a terror I wouldn’t wish on anyone. However invisible, it controls so much of your life.

“Imagine having a horrible sunburn that NEVER goes away or subsides. Now imagine someone slapping that sunburn. That’s the pain. No matter what touches you—hair, a garment, a hug—it’s all excruciatingly painful due to the hypersensitivity caused by fibromyalgia.”

- Marie A. (Texas)

Joy is out of grasp

“Perhaps the worst part was the frustration, despair, isolation and loneliness: being dismissed by doctors, friends, even my husband at the time (my 'wasband'). I was often told it was 'all in my head.' My life was collapsing.

“One morning, I wrote a poem that began ‘I hear the birds—they're singing, but in someone else's spring...’ I felt that joy was 'out there' but nowhere near my grasp.”

- Lynn D. (North Carolina)

Learn more about managing stress with fibromyalgia here.

There’s no comfortable posture

“Living with an invisible illness is the single most isolating thing to endure. What looks like a healthy individual on the outside is drowning in pain on the inside, all the time. There is no posture, pose, or position to make it go away.

“Most days it feels like you are carrying a 50-pound weighted vest, just ran a marathon on no sleep and are foggy in the brain like you just woke up.”

- Allyn A. (Oregon)

Here are tips for better sleep with fibromyalgia.

Physically and mentally draining

“Fibromyalgia feels like a migraine all over your body … It’s not an excuse to be lazy. It’s my everyday struggle.

“Dealing with Fibro isn’t just physically draining. It’s mentally draining, causing my anxiety and depression to go through the roof on multiple occasions.”

- Chanel M. (United Kingdom)

A crippling fatigue

“Some days there is numbness in my feet and fingers, which makes it difficult to walk to the bathroom or write. The fatigue can feel crippling because you’re tired even if you receive 14 hours of sleep.

“Relationships are a balance between the guilt you feel for having bad days and overcompensating on the days you are managing pain well—throwing yourself back into a flare of pain.

“Back pain keeps you with a heating pad or weighted blanket in arms reach. Nausea, bowel changes, and pain to the touch of your skin are also common in times of flare.”

- Michele J. from The Pain-Free PA (Georgia)

Think your chronic pain may be caused by fibromyalgia? Keep notes about your symptoms and talk to a doctor about your experience. They can help you pinpoint the cause of your pain, and if necessary, begin treatment for fibromyalgia.