Complex Regional Pain Syndrome.
Not nice. It is also known as RSD. It is relatively rare, and there are approximately 11,500 people who have it in the UK. It is often mis-diagnosed, or not diagnosed at all. Remeber all those trips I had to make to A&E and the doctor???? It is also completely misunderstood and at times it is hard for people to believe the pain involved, or to realise the ramifications of it. How do you explain pain? How do you try to get people to believe how debilitating it actually is when you are trying with everything in you to ward it off, stop the progression and manage the pain?
I have just read an article about a man who had accidently cut his hand at work, and subsequently developed CRPS and he has just been awarded £400,000 compensation. What troubles me more than anything is the fact that there are 52 comments re the article, and not one person has any idea of what CRPS is or what it means. They vilify the man and the judge.
They DO NOT HAVE A CLUE. Come and visit me, Daily Mail, and I will explain a few things to you. I can show you my swollen leg, and you can marvel at the fact that I have one leg which is ice cold and one which is normal, and one leg which is red and one which is normal.
You may assume that I am a little peeved. You would be right. I have CRPS. I have been lucky to be diagnosed fast, and to start the treatment quickly. Believe me, you do not want to get this. But if you saw me in the street, you may just see a woman who is walking a little oddly, maybe with 2 sticks. Maybe with a crutch. Maybe with nothing. I may seem totally normal to you.
What you would NOT see is what is going on in my head and my body. You would not know the effort required or the determination needed to do the small things which comprise normal life. The exhaustion the effort required causes. I will not let this beat me. I will make every effort to walk normally. Drive. Potter about my house or garden. Go for walks. I have to do all these things. If I don't I will lose the ability to do them. At all. CRPS is progressive. I am not going to allow progression.
I went to Bath to the Royal Hospital for Rheumatic Diseases, and an intensive 2 weeks CRPS course. This is the centre of excellence for CRPS in the UK and it is internationally renowned for its research and treatment. There is no better place in the UK. I was so lucky to be given the chance to go on the course, and it was wonderful to have so much expertise available to help me learn to deal with CRPS. I had one-to-one sessions with occupational therapists, physiotherapists, the psychologist and the amazing team leaders. I took part in screening, tests and research. I also met 2 wonderful woman who are further down the road with CRPS and we all learnt from each other.
Best of all was not having to explain. They knew. They all knew the disease well and they understood. The simple fact about my CRPS is that I injured my knee. And my sympathetic nervous system was damaged in some way and it is now malfunctioning.
I feel real, appalling pain. However, the reason my nerves started transmitting pain signals , when I damaged my knee, is gone. The knee got better. The nerves are locked in the screaming pain part and did not subside after my knee healed. This is not in my head. It is in my leg. The pain continues and it never ever stops. Never.
However, I have to do the intense physio, the hydro exercises and the relaxation techniques, the desensitising and I have to keep moving. My leg doesn't work like it used to work. It feels as though it is badly damaged. But, I have to ignore that and move. So I am at war with my own body in a sense. I am over-riding the signals I have trusted for 54 years. I can't believe what my brain is telling me. This is unbelievably difficult. Hopefully, if I keep doing this, I will build new neural pathways and the nerves will wither. This is not medical speak, this is what I tell myself.
And there is not just the pain to think about. I also have a problem with my short term memory, and with focussing. All three of us have the same problem - we all have piles of half read books at home. We all have problems thinking of the right words we want to use. We all find concentrating difficult. We forget things.
Hydro was a revelation. I love it. And the water takes 77% of the load, so I can even run in the pool. I cannot describe how bizarre I must look, but hey, I can run. The 3 of us had such fun one session that we somehow never got scheduled in at the same time after that. Oops. Lunges, twists, balance, resistance work. I need a hydro pool here at home. (Dreams are good!)
Crossing our "midline" is hard too. I have never had a problem walking like a soldier - you know the nordic walking thing - opposite arms and legs. Now????? Hahahahahhaaaaa. I have to do it on land and in the water, and it is so difficult, I have to stop every few paces and start again. I will get it right. I used to be able to do it.
I sit on a gym ball, and I have always loved working with these enormous balls. I am/was good at it. Now I sit there and I can centre myself and lift one foot off the ground. The other one??? Nailed to the ground. I have to re-adjust my bottom a zillion times and I may just get it off the floor. But my spine is twisted. I practice every day, because I want to do it right and get my balance - the core- back to how it was. I also have a goal they set for me to raise each leg straight ahead of me while sitting with a straight back. I have 3 months to get this right. I will do it.
The de-sensitising is working. It is amazing. I have 9 different things in my bag. A pot scourer, a dishwashing sponge, a feather, a piece of leather, corduroy, silk, net, hessian and cottonwool. What we do (about 6-8 times a day) is to take some of those things, and rub them softly or firmly on our good limb, and focus on what the feeling is. Then we do the same on the most painful part of our bad limb. And focus on trying to keep the feeling the same as on the good leg. We rate the pain on a scale of 1-10, bearing in mind a base pain level we set before we start. It is unlikely that my base pain level would be below 5. It can vary through the day and sometimes goes up much higher. So the levels we give the objects we use would be the same or higher.
Take a guess which one is the worst for me?
It is like a trail of fire. And you know what? This is the most common worst one with patients. The hessian feels like a million sharp needles, and the net is also foul. So is the feather. You see, with CRPS, there is a chain. If you poke your leg with your finger four times, you will feel 4 distinct pokes. With CRPS, they all link up and you feel fire racing from point to point. The nervous system in the affected leg is locked into a "red alert" mode. Fight or flight. It is stuck and can't move. And I can't un-stick it. So it is like when you hurt yourself and get that searing pain??? You snatch your hand away from the flame, or what ever caused the pain. Your nerves signalled your brain to get your hand to act. That is how it should work. Now picture those nerves stuck in the emergency mode. Yep. That is CRPS.
There is medication of course. Loads of it. I hate pills. They are now my best friends. For now. I take Gabapentin, which is used to treat epilepsy, and I do not have epilepsy. It works on the nerves. In conjunction with Amiltriptyline, which is for depression, and I am not depressed. That one helps me sleep too. I take painkillers as well, and I have lidocaine patches to put on my leg, so it is anaethestised enough at night for me to get some sleep. Then there was the IVG. The Intravenous Guenethidine block, - remember the worm thingy? That one. That was supposed to relieve the pain, and after 3 and a half weeks without that, I can only say that it must have worked well, because I am in far more pain now without it. Roll on May when my pain specialist gets back.
There is so much about CRPS that I could tell you. I have learned so much from the experts. You know how I had to get used to it being "my" leg again, how it felt like it was inhabited by aliens. I cracked that one, thank heavens. Also very normal in all patients. And then there is mirror therapy too. Wobble cushions, different methods of walking. So many things.
So there you are. My experience of CRPS. It hurts. It hurts to do anything at all. But isn't it strange - of all the people in the hospital on pain relief courses, the CRPS patients never ever talked about pain. It was just accepted as being there. We laughed, we chatted, we had fun. And no-one would have guessed what lay beneath the surface. We would just casually ask what our base pain levels were now and then.
I am just trying to ignore the pain and keep moving. That doesn't mean it is not there. It will take a while. I still believe I can get better, but I acknowledge that it is a possibility that I may not get better. Whatever happens, I will have tried everything.
Just do not ask me to prove I hurt. I look normal. I try to act normally. But you have no idea from the outside what is going on on the inside. I have a gym ball in my lounge. I also have a trampoline thingy. Those little ones. De-sensitising packs. I lie in bed and do exercises. I walk down the stairs and do exercises. I make coffee while rising up and down on my toes. More exercise. I do exercises while I sit here. I watch TV and exercise.
I have been told I have to pace myself, and to put myself first now and then (the hair remember) and I have to breathe even when it hurts most and I want to hold my breath. Pacing, breathing..... So much to learn. I have charts to fill in with every hour to be coloured according to my activity. I have hydro goals, physio goals, OT goals, psychology goals.
But I am still me. And CRPS is real. Not imaginary. And now we will cease talking about it for a while.
(Everything I have said here is my own personal experience and opinion. I have detailed leaflets to edit for the CRPS Patients Forum, but they will take a little time to do. )