You hear a lot about “fibromyalgia pain,” but those of us with fibromyalgia (FMS) experience several kinds of pain.
Medically speaking, only a few of the pain types I talk about here have names and definitions. But just as Eskimos have several words for snow, I think we need to have several ways to name, define and categorize our pain. I’ve created some of my own categories, based on my experience and on conversations with other fibromites.
My hope is that understanding the medical terms will help us communicate better with doctors, while my categories will help you understand your illness and let you know you’re not alone.
Types of Pain
The first three types of fibromyalgia pain are medically defined:
- painful paresthesia
The next four types are my own creation, which is obvious by their names. Don’t use these terms in a doctor’s office (unless you want to be seen as crazy), but these labels may help you get to know your body’s quirks, triggers, patterns, etc.:
- knife in the voodoo doll
- randomly roving pain
- sparkler burns
- rattled nerves
First, our medically defined pain types.
“Hyper” means excess and “algesia” means pain. Hyperalgesia is the medical term for pain amplification in FMS. Our brains appear to take normal pain signals and “turn up the volume,” making them more severe than they would normally be.
And when your brain says pain is severe, guess what: it actually becomes severe.
Most of the drugs used for managing FMS pain are aimed, at least in part, at reducing hyperalgesia.
Is your skin painful to the touch? A symptom that perplexes a lot of us is allodynia. That’s what it’s called when mild pressure from clothing or gentle massage causes pain.
A lot of people describe allodynia as similar to a bad sunburn.
Allodynia is a fairly rare type of pain—other than FMS, it’s only associated with a handful of conditions, including neuropathy, postherpetic neuralgia (shingles), and migraine.
Allodynia is believed to be a hypersensitive reaction that may result from the central sensitization associated with FMS. The pain signals originate with specialized nerves, called nociceptors, that sense information about things like temperature and painful stimuli right from the skin.
Paresthesias are odd nerve sensations that can feel like crawling, tingling, burning, itching or numbness. Sometimes, these sensations can be painful. Paresthesias are also associated with peripheral neuropathy, chemotherapy drugs, multiple sclerosisand migraine.
Many common FMS treatments can help alleviate paresthesia-related pain, including selective serotonin reuptake inhibitors (SSRIs) and serotonin-norepinephrine reuptake inhibitors (SNRIs). Some people also have good luck with vitamin B12, capsaicin cream, massage, and acupuncture.
My Own Pain Categories
Once again, the following categories are not medically recognized—they’re things I came up with to fill a gap in how we classify different types of pain.
They’re intended to help you track symptoms, gauge effectiveness of treatments, and to let you know you’re not crazy.
Knife in the Voodoo Doll
Sometimes, out of nowhere, I’ll get an intense stabbing pain that seems to cut through my body. I’ve also described this as a fireplace poker in the ribs or being impaled on a spear.
For me, the voodoo doll pain is often my body’s early warning system. It tells me that I need to stop what I’m doing and rest. Other times, I have no idea why it strikes.
I generally get this pain in my chest or abdomen, but some people say they get it in other parts of the body.
It can be so intense that it can double me over and make it hurt to breathe. It usually goes away as after a few minutes.
I have no idea how to prevent this type of pain, other than by pacing myself. (If only I could find that darned doll….)
Randomly Roving Pain
This is one of those things that reminds you FMS just doesn’t make a lot of sense. A lot of us get pain that migrates around the body, sometimes moving between certain places, sometimes striking in new areas.
If you also have myofascial pain syndrome, it can be especially hard to tell randomly roving pain from the referred pain caused by trigger points.
One 4th of July, when I was young, I hung onto a sparkler for too long and some sparks hit my hand. They caused tiny pin-pricks of pain almost identical to sensations I now get regularly.
Sparkler-burn pain makes me jump, and scratching the painful spots triggers tactile allodynia. These sensations usually just last a few seconds. I have no idea what triggers them or how to prevent them.
Most people won’t understand why I call this a type of pain, but I’m sure most fibromites will get it.
Certain things tend to get my whole body on edge, jumpy, and feeling rattled. It makes me ache all over, and sometimes I get nauseous, dizzy and anxious.
Things that rattle my nerves generally involve sensory or emotional overload, such as:
- certain sounds (repetitive, loud, shrill, grating)
- visual chaos (crowds, flashing lights, busy patterns)
- stressful situations (busy traffic, confrontations, fibro-fog induced confusion or disorientation)
When my nerves are rattled, I try to get out of the situation as quickly as possible and relax, preferably somewhere quiet.
Living With Pain
It’s difficult to live with pain, especially when it’s unpredictable. The more you learn about your pain and its triggers, the better you may be able to manage it.
Finding the right set of treatments takes time and experimentation, but many of us do find significant relief.