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.
4. The Feeling Of Being Alone
This is probably the biggest truth I wish I had known. When I’m having a flare-up, all I can think about is how alone I am, and how hard it is for anyone around me to understand what is going on. Nobody can even begin to imagine the kind of pain I am experiencing. I will be alone in my room and just cry while trying to deal with the pain. I can’t bring myself to talk to anyone. Even if I am with someone during a really bad flare-up, I sometimes become unresponsive. I slip into a state of fear and panic. I block out everything and everyone around me, drop my head, and sink into myself. I become terrified of the pain and the thought of being alone during this. It feels as though I am drowning and can’t get air.
Having CRPS has definitely tested my patience and my strength. It takes a lot of effort to go through these flare-ups and still manage to wake up the next day and try it all over again. The best thing to do during a flare-up is to just breathe, and to remember that you are stronger than your illness.