Every morning I wake up to unimaginable pain. At night I lay awake unable to sleep because of the pain in my knee. Pain is my constant companion; overshadowing every step, every action, every day. And this is CRPS: it’s hell.
CRPS stands for complex regional pain syndrome and is also known as RSD (regional sympathy dystrophy). It is a rare chronic illness that affects 1 in 4000 people. People don’t catch CRPS, nor is it a genetic mutation, in fact CRPS begins with a small injury; for example, I sustained CRPS from a muscle strain on a DofE expedition. From then on the pain the injury heals, while the pain stays. Children can regain the use of their limb, however, adults cannot. The pain will not go away and there is no cure.
There is no real way to explain CRPS to those who don’t have it. Perhaps I could say that it is the most painful thing known to man (rating above migraines, childbirth and amputation without anaesthetic). I could tell you that the pain is sometimes so great that I cannot speak or communicate as it literally consumes me. I’ll tell you that this sort of pain is something that I would never wish upon anybody… ever. But for you to have even the vaguest of ideas what the pain is like I’ll give you a more visual explanation. Imagine your arm or your leg being set on fire, then knives stabbing up and down, then an icy feeling (similar to frost bite), then finally someone crushing you limb with a hammer. CRPS is worse than this. This is just the beginning of the pain that is so powerful words cannot describe it. The pain is something you cannot understand until you’re felt it. It is the most painful thing, ever.
Other symptoms of CRPS include brittle nails, slowing or speeding up of hair growth, colour and temperature change and hypersensitivity. Hypersensitivity is a real problem for anyone who suffers from CRPS. Nothing can touch the affected limb without if hurting; this stretches as far as to include duvets, jeans and even air. On a bad day when someone hugs me and their leg is close to mine I can feel it. This means that means that many people with CRPS dislike human contact. And who can blame us when it hurts so much?
People. People are one of the most difficult parts of CRPS. I’d like to give my own opinion on a few of the sayings that we’re on the receiving end of. Firstly expressions such as: ‘suck it up’ or ‘get over it.’ This makes every person with CRPS so angry! The temptation is to hit the person that said this with a crutch to the legs, then look at them and tell them to walk it off. Because that’s what we do every day. The most hurtful thing you could say to any of us is: ‘It’s all in your head.’ Now, we get this: a lot. Doctors, friends and even family. And each time we hear it, it’s another person we no longer trust, another person whom we can no longer rely on. Let me tell you this: it’s not in my head! This pain that I face is too real to be imagined so don’t tell me you don’t believe me because, trust me, I need all the help I can get!
Another common problem people face is tablets; the phrase pill popper comes up a lot. As a community we have tried… everything. Morphine, ketamine and even marijuana. Nothing works. All these (and many others beside) do make us sleepy, lethargic and our cause our hair to fall out. I take 3 different kinds of tablets (which is nothing) and I feel no different. Sleeping pills don’t work and pain killers just make me feel sick. And in the morning I wake up to a small clump of hair on my pillow. There really is no cure. Amputations don’t stop it as phantom pains follow the operation, nerve blocks are useless and everything else has been tried and has failed.
Another equally common side effect is depression. After a while there is no spark of life, no will to keep going and no point in living; this leads to suicide. CRPS is also known as the suicide disease because after a while all hope leaves you. Knowing that you have to spend the rest of your life in agony is hard to accept. We cry, we shout and after that we give up, go quiet and no one notices any more. Because surely death is a better solution than this life? And nothing could ever be worse than this.
So, in reality and one who has CRPS is incredibly brave; tremendously so. We get up each morning, go through the day, have sleepless night, then do it all again. All because we hold onto that tiny sliver of hope that will us to keep going, to not give up. We hope that we can get better, hope that we can someday find a cure and hope that, one day; we will wake up without pain.