Life in the Slow Lane

Hi :)

Reflex Sympathetic Dystrophy is a cruel and little understood condition which is characterised by constant, relentless neuropathic pain manifesting itself in every conceivable way - and some you couldn't even begin to imagine as well. In my case, what started as a sprained left ankle has led to RSD spreading to encompass every joint in my body, while the muscle groups in my lower legs are affected by spasms and cramps many times per day. There is severe muscle wastage. The tendons and ligaments in the lower legs are also affected, as they are in the wrists and hands.

There is no cure for RSD. There is no truly effective treatment. High doses of anti-convulsants are taken to combat the worst of the pain and the spasms together with opioid painkillers and muscle relaxants in the form of anti-depressants, but really this isn't overly successful and the side-effects are, quite frankly, appalling. The numbing of the brain, the confusion, the memory loss - they're frightening enough. I shan't bore you with any more. I get about with two walking sticks on a good day, two arthritic crutches in a bad day, and for distances longer than 100m I have an invalid scooter.

There is a drug that might help. Cannabis, if it were legalised for medicinal use. But it isn't, and despite the wretched pain I'm not prepared to break the law. But joy of joys! A cannabis derivative pharmaceutical drug has been produced. It's called Sativex. It would, my consultant has admitted, in all probability help me. It would almost certainly relieve the dreaded spasms and cramps, if nothing else. So why, I hear you ask, am I not being prescribed this wonder drug? Well, it's those lovely people at NICE again. (Has there ever been an acronym less appropriate? Do tell.) Sativex hasn't been licensed for prescription in the UK yet. In Canada where it's manufactured, it's been approved for some time.

My Pain Consultant has also told me that he feels very certain that if/when Sativex is licensed for use in the UK it will only be available for sufferers of MS. That's it. For people with other, less well known conditions, forget it. Carry On Suffering.

Obviously I have got every sympathy with MS sufferers and it's quite right that they should have access to this drug. My point is simply that it shouldn't be uniquely them. There are others. People on the sidelines with "Cinderella" conditions that most haven't heard of. People struggling along, in pain, living life very much in the slow lane. People, if you will, like me.