Sunday, September 13, 2009

There is a Name to My Pain

To follow are articles written by Adrienne Dellwo on I knew I had sensitivities to light, sound, too many people in a room, talking and moving all at once. I had no idea until I read this article that the sensitivities had a name. It is Allodynia Pain. Enjoy Adrienne's articles. Go to and sign up for her email newsletter. I gain information from her writings. I have added my comments below.

"This type of fibromyalgia pain is extremely common in us, but it's one of the harder ones for other people to understand. That's because, by definition, things that cause allodynia shouldn't hurt. That's right -- allodynia is "pain from stimulus that usually doesn't cause pain." Examples: flashing lights, repetitive sounds, visual "chaos," confusion. How do those cause pain? I don't know, but trust me: they do. And I'm not talking headaches, like you might expect from light and sound. For me, these things cause pain to rip through my abdomen. I know, it's weird. Allodynia comes in several forms, and those of us with fibromyalgia can have any combination of them. The examples above are the basic form. There's also:

  • Tactile allodynia. Pain from touch/light pressure, such as from a waistband or bra strap.
  • Mehanical allodynia. Pain from motion across the skin, such as light massage or the brush of fabric.
  • Thermal allodynia. Pain from heat or cold that's not severe enough to damage tissues. I.e., cold feet may feel intense, sharp pain.
Allodynia's not terribly well researched or understood. Some drugs are clinically shown to help, as are some pain creams. See the allodynia section in 7 Types of Fibromyalgia Pain for more information on treatment options."

And the second article:

"Types of Fibromyalgia Pain

The first 3 types of fibromyalgia pain are medically defined:

Hyperalgesia Allodynia
Painful Paresthesia

The next 4 types are my own creation, which will be obvious by their names. I don't recommend using 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, the medically defined types of fibromyalgia pain.

Hyperalgesia & Fibromyalgia

"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. Most of the drugs used for managing FMS pain are aimed, at least in part, at reducing hyperalgesia.

Allodynia & Fibromyalgia

A symptom that perplexes a lot of us, especially when it's new, is allodynia. That's what it's called when your skin hurts to the touch, and when mild pressure from clothing or gentle massage causes pain. A lot 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.

Allodyniacomes in 3 forms:
Tactile, which is pain from touch or gentle pressure
Mechanical, which is from something moving across your skin
Thermal, which is pain from heat or cold that's not severe enough to damage tissues

Some drugs that work for some people with allodynia include:

Some people also get relief from topical pain creams (capsaicin, Tiger Balm, Aspercreme, BioFreeze). Paying close attention to the way you dress can help alleviate allodynia as well. If you have allodynia, massage therapy may make it worse. If you feel other aspects of your health would benefit from massage, be sure to discuss allodynia with your doctor and massage therapist and keep track of how treatments impact this symptom.

Painful Paresthesia & Fibromyalgia

Paresthesias are odd nerve sensations that can feel like crawling, tingling, burning, itching or numbness. Sometimes, these sensations can be painful. Paresthsias are also associated with peripheral neuropathy, chemotherapy drugs, multiple sclerosis and 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 Fibromyalgia 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 alone.

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. For me, this pain responds to treatments about the same as hyperalgesia.

Sparkler Burns

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. They make me jump, and scratching them triggers tactile allodynia. These sensations usually just last a few seconds. I have no idea what triggers them or how to prevent them.

Rattled Nerves

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. "

Deb's Comments

My reaction to light causes me close my eyes until my eyes acclimate. Sunglasses help, but my eyes must still adjust to the light. Sounds with higher pitches hurt my head and ears. I find my shoulders drawing up to my ears. As my fatigue increases, sounds are more irritating.

Many people together in a small space, all talking and moving around create anxiety. I know they are having a great time and I want to enjoy them, but I must remove myself. Other times, sitting on the outside of the commotion works.

If plans change without my control, anxiety is immediate. When I'm exhausted, my Fibro Fog is very active and if I'm faced with making a decision, I can't. My husband understands and jumps in to make the decision, for which I am grateful.

I come from a family of huggers. We hug when we arrive and we hug when we leave. I remember being sad that by receiving a hug from family or friends that it hurt so bad. I informed them to be gentle, but it is difficult for them to understand or to remember. Once I was put on medication, the sensitivity was masked. Depending on the strength of the hug, I still feel the pain but I rate it at a 3 instead of a 10. I'm a happy girl with this sensitivity at this point. .the drugs are working. :D

Hot and cold sensitivities...what stinkers they are! I have the most trouble with hot weather days. My FM is in "red flag form" on hot days. I can bundle on cold days, but if the wind is blowing, I'm in trouble.

Sometimes I get goose bumps on my arms and legs for what seems like no reason. I'm not cold, no wind is blowing on me. The weather is not an issue. They do not hurt nor last long. My husband calls this sensation a "cold snap."

I'd enjoy hearing from others about their symptoms. I realized early on that by support from FM/CF sufferers, I learn that something I'm experiencing, is actually a FM/CF symptom, especially if it is not a commonly talked about symptom. An example of this is when I complained about having alot of phlegm. I now know this can be a Fibromyalgia symptom. I'm having flu symptoms in the form of aches, back of the throat swelling and additional Fibromyalgia pain. Hoping for a better day tomorrow.

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