Archive for the ‘Scouting’ Category

Allodynia

April 8, 2022

Allodynia is a type of pain that many of us with Fibromyalgia have. It is basically a extreme sensitively to touch. People with this can have extraordinary pain from simple every day contact like combing one’s hair.

My Allodynia

I don’t know if my situation is unique, but mine seems come and go, and it can vary depending on the amount of pressure.

Some days I’m golden. I have zero issues. Other days, I will shed a hair from my head and when it falls on to my unsuspecting arm I am in excruciating pain. Other times I with just come in light contact with something and the pain is agonizing, but I can have firm contact like a hug and there’s nothing. I don’t get it.

There appears to be no rhyme or reason as to which circumstances will crop up on any given day. Fortunately, it does not change from one to another on the fly. I’m more likely to switch from one to another on different days. So on one day I’m good, but the next day it hurts to brush my hair or even my teeth (yes, it can impact my gums).

I have found that the most noticable instigator of this type of pain is from a hair touching my skin, either stopping, caught on hard or leg hair, or feeling it as the single hair strand bounces on my skin as it falls. Because of this, I tend to brush or comb my hair fairly frequently. My sister was surprised when I mentioned that I will brush my hair several times a day, vs the once or twice she brushes her hair. I also tend to pull my hair back or up to prevent loose hairs from falling.

The other way it frequently hurts is a casual touch. A light hand on the shoulder. Someone brushing by me. My mom no longer touches me because of the number of times I have flinched unless I have asked her to, like rubbing A535 into my back. My sister is the same. My neices & nephew tend to forget. My intimate relationships don’t seem to be impacted as much cuz those touches tend to be more firm.

The hardest part is incidental touches by others who don’t know me as well. I am a leader in scouting. I’ve had youth come and touch my shoulder from behind so I’m in prepared, or a hug from a child who forgets they aren’t allowed to touch without consent.

There are also times when I know to expect contact. A perfect example is another scouting situation. As the ‘head’ leader (usually called Akela, but the Scouts named me Koolaid before I went to Cubs) I do opening & closing. This includes the challenge. I yell “Pack! .. Pack Pack Pack!” and the youth come running to challenge me, as I am the head wolf (hence wolf cubs). They come to a tight circle around me, but every meeting someone will run too far or have a hand out or jostle with another youth & contact is made Because I know it’s likely coming from somewhere, I can prepare for it and it’s less of an issue.

Lately, it doesn’t seem to be as much of an issue as it has been in the past. I don’t know why. Is it the improvement in my overall health? Is it my weight-loss? Is it than my activity level has changed? Is it that my pain levels had dropped? Is it a change in medications? I have no clue.

if you experience this condition, how does it impact you?