What I Wish I Had Known About Complex Regional Pain Syndrome Flare-Ups

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There is so much that is not told to you when first diagnosed with a chronic illness. When I was diagnosed with complex regional pain syndrome (CRPS), also known as reflex sympathetic dystrophy (RSD), I remember being told that I will have “flare-ups” where my pain increases significantly. However, nobody told me the truth about what a flare-up will actually be like.

If I could go back to the day I was diagnosed, these would be the four things I wish I could have known about:

1. The Burning Pain

Yes, CRPS patients experience burning pain 24/7, but during a flare-up, this pain will drastically increase to the point where I can’t even stand to have my toes touching each other. I am astonished by the fact that I look at my feet and there are no flames there. In fact, the saying for CRPS is “burning for a cure.” Orange is the awareness color for CRPS, along with the orange ribbon and flames. Imagine having your foot doused in gasoline and lit on fire. Then imagine that someone started rubbing sand paper and salt on the raw limb. That is the type of pain I experience during a flare-up.

2.  The Hypersensitivity

Just like the burning pain, my feet are always hypersensitive. However, during a flare-up not only does touch hurt, but so do other things – such as vibrations. If I am in a room with loud music, the vibrations from the music hurt me. Now mix that with the amplified effect that even light touches have on me, and it become very hard to even sit comfortably. I often find myself hanging my feet off the bed so absolutely nothing touches them. If I am having a flare-up that includes tremors. And, if I am with someone, I will have that person try to control the tremors by putting pressure on my foot. But the feeling of their hands touching my skin is excruciating. It becomes a challenge where we try to figure out what will and won’t help.

3. The Exhaustion

Some of my flare-ups will last only 10 to 15 minutes, while others can last an hour or even longer. It is completely exhausting to continuously try to fight through these pain flares. There is nothing I can do to make them stop. I get so tired of trying to do everything I can to keep my feet from touching things while still trying to remain “comfortable.” I will try to keep myself relaxed so to not make the flare last longer than it has to. If I freak out, the pain worsens and the flare-up will usually continue. When the flare finally ends, all I want to do is sleep.

<="reflex-sympathetic-dystrophy-syndrome-association-5a64d19f197f3" data-partner-name="Reflex Sympathetic Dystrophy Syndrome Association" data-partner-slug="" data-partner-id="239586">

RESOURCES FROM REFLEX SYMPATHETIC DYSTROPHY SYNDROME ASSOCIATION