Pain Speaking Project

Pain speaking slider

The aim of the Pain Speaking Project is to help people who have not experienced living with a Chronic Pain condition understand how we experience the world.

Patients & family members have come together to share their experiences.  Pain is subjective and can’t be easily measured even with the advances in modern medicine. Currently, people are asked to rate their pain on  a Scale of 0 – 10 with a 10 being the worst imaginable.

An individual’s pain rating will vary based on their life experiences. A person whose most significant injury was a stubbed toe would have a very different perception of what a 10 is than someone who has broken a bone, given birth, or suffered 3 degree burns over 25% of their body.

Patients with Painful Diseases & lifelong Disabling Injuries are providing descriptions of how pain feels to them which are being converted into graphics. 

Living With Chronic Pancreatitis

A “Normal” day is like being impaled with a rusty harpoon. The pain never stops. It lingers 24/7/365.

During an intense attack it feels as though someone set the harpoon on fire before impaling me with it.

SteelToeDoc Chronic Pancreatitis #PainSpeaking
SteelToeDoc This is how if feels to live with Chronic Pancreatitis #PainSpeaking #SeeOurPain

Fibromyalgia Flares & Migraines

#Fibromyalgia flare up feels like someone poured boiling water all over me, then beat me with a baseball bat. Migraines are like a blacksmith pounding a hot poker on his anvil in my temple.

PainSpeaking Fibromyalgia Migraine
This is how it feels to live with Fibromyalgia & Migraines. #SeeOurPain

Fibromyalgia Small Fiber Neuropathy Phantom LImb Pain

With fibromyalgia, small fiber neuropathy, and phantom pain from amputation, my list goes well beyond the words I can use. My everyday pain feels like having a “hot” tooth, but all over. Right now I just feel like I have road rash and bruises all over skin. Not even a bad day!

KimmMathiesen Pain Speaking Fibromyalgia Small Fiber Neuropathy Phantom LImb Pain
This is what its like to live with Fibromyalgia Small Fiber Neuropathy Phantom LImb Pain

Tarlov Cyst, Herniated Discs, Intracranial Hypertension

I have a Tarlov cyst at S2. It traverses S3 and my scrum is eroded. Sometimes when I go to sit down, I shoot right back up due to the pain. It’s like I just sat on a jagged rock. For decades, I have been woken from a deep sleep with rectal pain; it’s an intense pressure and feels like a bowling ball is trying to push its way out. At the same time it feels like I am being stabbed with a knife inside my rectum about 5 inches long.

I gasp, trying to catch breath from the pain, and pass out.


There’s been times I’ve gotten rectal pain while standing, and my legs collapse.

I have herniated cervical, thoracic, and lumbar discs. Also intracranial hypertension. My thoracic spine feels like there’s a heavy cinder block strapped to it and it keeps being ratcheted tighter. It’s a crushing pain; like my spine is literally being crushed.


Sometimes it feels like a knife is being stabbed in my vagina. It’s the wonderful life of a female patient with a symptomatic Tarlov cyst.

This how it feels to live with a Tarlov cyst, Herniated Discs, intracranial hypertension
Tarlov cyst, Herniated Discs, intracranial hypertension Tarlov cyst, Herniated Discs, intracranial hypertension This is what it's like to live with a Tarlov Cyst, Herniated Discs & Intracranial Hypertension

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