Why It’s Too Painful for Me to Take a Walk on the Beach


It is difficult to explain to someone who doesn’t have reflex sympathetic dystrophy/complex regional pain syndrome (RSD/CRPS) what it feels like. I’ve heard many explanations during my 16 years of battling it, and here’s the best one that I’ve heard: Imagine the blood being drained from your veins. The blood is replaced by lighter fluid and a match it lit. This, in a nutshell, is RSD/CRPS.

However, there’s one symptom of RSD/CRPS that’s difficult for people to understand when I try to explain it to them: allodynia: It’s a painful response to a non-painful stimuli. What does this mean? It means that even something seemingly as harmless a breeze hurts my body. My pant legs rubbing up against my legs is torture. A shower feels like knives stabbing me. The blankets I sleep with at night to keep me warm feels like sandpaper against my skin.

When I try to explain allodynia to people, they respond by just staring in disbelief. This response is understandable, because it sounds so ludicrous that a breeze could cause me to curl up in a ball and cry. However, it’s true. Something as simple as a walk on the beach, which is supposed to bring a sense of calm, makes me want to jump out of my skin. Because of this, I only stepped foot on the beach on my honeymoon to Aruba a handful of times, and instead chose to spend my days on the chairs by the pool. Things that others take for granted — taking a bubble bath, enjoying an outdoor wedding and spending the day at the ocean — are terribly painful for me.

I have tricks I use daily to help lessen the effects of some of these (what should be) non-painful activities. For instance, I wear knee-high socks every day. Even in the summertime. The static pressure of the socks is less painful than feeling my pant legs rub directly against my skin or a breeze when I’m walking or sitting outside. While a lot of people enjoy taking long showers, I take quick ones to keep the stabbing water droplets to a minimum. When my legs are really hyper-sensitive from the allodynia, I’ll make a little blanket tent in bed, so the blankets can still keep me warm but don’t touch my legs. 

It’s hard to fathom living a life where things that should be comforting are so incredibly painful. I know this because I wouldn’t have been able to understand it either before I was diagnosed. However, that is the reality for so many of us with RSD/CRPS.

Please don’t take the things that comfort you for granted. Any day, there could be a change in your health, and those comforting things are now your enemy. When I have a day where my pain is lower, I take off my socks for a few hours outside or take a shower that is just a minute longer than normal. I cherish those little victories, and I look forward to the day when I can take a walk on the beach with my husband again.

We want to hear your story. Become a Mighty contributor here.

Lead photo source: Thinkstock Images


Find this story helpful? Share it with someone you care about.


Related to Reflex Sympathetic Dystrophy Syndrome

beck mcclintock

The 'Stuckness' of Living as a Sick Person

Thursday, 4:30 p.m. I was talking to a friend, describing my odd lack of enthusiasm for rejoining the human race,  with regards to school and work.  She listened quietly then said, “So you’re stuck.”  I sat looking at her for a minute, then said, “Yeah, I’m stuck.” It made total sense and yet it took [...]
Rachel Ehrenberg at her gymnastics club

When I Shared My Chronic Illness Story With My Gymnastics Club

In September 2015, a friend asked me to go to the first practice of the gymnastics club on campus. Little did she know that I quit gymnastics in 2008 after an injury. I was diagnosed with reflex sympathetic dystrophy (RSD), which is also known as chronic regional pain syndrome (CRPS). I had stopped saying I am a [...]
A young woman with a cap and glasses, Portrait, Illustration

11 Things I Wish Friends Knew About My Life as a Teenager With Multiple Chronic Illnesses

I wrote this because it’s so hard for me to be a teenager while having multiple chronic illnesses. Most of my friends don’t understand. They try, but they don’t always understand. I hope anyone who reads this can relate and get a better understanding of what I and many other people go through. 1. I would [...]
woman looking down with her face resting on her hand

On the Days I Can't Ignore My Chronic Pain

It’s 8:30 a.m. on a Saturday morning. The rock climbing gym opens at 10 a.m., and I told my husband and our friends that I’d go climbing this morning. I’m laying in bed, contemplating canceling on them, or getting up and going to climb, even though my next round of treatment is still two weeks [...]