By: Rachel Ehrenberg
There is so much that is not told to you when first diagnosed with a chronic illness. When I was diagnosed with ramified regional pain syndrome (CRPS), moreover known as reflex sympathetic dystrophy (RSD), I remember stuff told that I will have “flare-ups” where my pain increases significantly. However, nobody told me the truth well-nigh what a flare-up will unquestionably be like.
If I could go when to the day I was diagnosed, these would be the four things I wish I could have known about:
1. The Urgent Pain
Yes, CRPS patients wits urgent pain 24/7, but during a flare-up, this pain will drastically increase to the point where I can’t plane stand to have my toes touching each other. I am astonished by the fact that I squint at my feet and there are no flames there. In fact, the saying for CRPS is “burning for a cure.” Orange is the sensation verisimilitude for CRPS, withal 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 wits during a flare-up.
2. The Hypersensitivity
Just like the urgent pain, my feet are unchangingly 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 inferential effect that plane light touches have on me, and it wilt very nonflexible to plane sit comfortably. I often find myself hanging my feet off the bed so veritably 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 tenancy the tremors by putting pressure on my foot. But the feeling of their hands touching my skin is excruciating. It becomes a rencontre where we try to icon 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 plane 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 alimony my feet from touching things while still trying to remain “comfortable.” I will try to alimony 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 Stuff Alone
This is probably the biggest truth I wish I had known. When I’m having a flare-up, all I can think well-nigh is how vacated I am, and how nonflexible it is for anyone virtually me to understand what is going on. Nobody can plane uncork to imagine the kind of pain I am experiencing. I will be vacated in my room and just cry while trying to deal with the pain. I can’t bring myself to talk to anyone. Plane if I am with someone during a really bad flare-up, I sometimes wilt unresponsive. I slip into a state of fear and panic. I woodcut out everything and everyone virtually me, waif my head, and sink into myself. I wilt terrified of the pain and the thought of stuff vacated 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 weightier thing to do during a flare-up is to just breathe, and to remember that you are stronger than your illness.