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.

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