Friday, 11 March 2016

Don't Touch Me! My Life with Allodynia

If you are regular reader of my blog, or know me from elsewhere then you will know that I am currently suffering from Transverse Myelitis. If you don't know then there is a link at the top of my page to previous posts explaining my condition.

One problem the condition has left me with is allodynia. I was told last week by my neuro physio therapist that it's something that may not go away!

So, what is this strange thing allodynia?
It actually means 'other pain' and it means pain that results from a stimulus that is not normally painful, for example a light touch, or clothing.

Have you ever had sunburn? When your skin is red and extremely sensitive that even your t-shirt hurts? It's kind of like that. I say kind of, because not all experiences are the same, and I'd say mine is less like the burning sensation of sunburn, but definitely the sharp tingling feeling.

I can take a shower and the water feels good on my skin (Some sufferers would disagree) but when I dry myself, even my softest towels feel like sandpaper. After it started I distinctly remember the first time I wore something with sleeves, I thought I was going to go crazy. I have got used to sleeves now, it's too cold not to wear them! I have had to rethink my wardrobe though. I can't wear anything too tight or too close to my skin, and some materials drive me crazy. I've had to resort to light fitting jeans and cotton trousers and soft but not fluffy jumpers and tops. I hate putting my socks and shoes on, mostly I'm in my slippers, but I guess I have to make the effort on the odd occasion I leave the house.

I can hold something on my lap for a while but will recoil at a stroke from one of my kids or my cats. My 6ft son trod on my toe and I hardly felt anything, but my physio therapist replaced my socks and I thought it was torture.

Allodynia can be a feature of many conditions including fibromyalgia, postherpetic neuralgia and even migraine. Mine is caused by nerve damage after my spinal cord was attacked by my immune system.

I don't have it all over, it's worse in my feet, then it moves up my legs and I also have it in my arms. My head and torso are free from the pain. In fact I can run my finger down my torso and feel exactly where the pain starts, just below my belly button. My medication helps somewhat, it always feels a little better when it kicks in.

I will never give up hope that it will go away.


  1. Oh gosh. How awful. I haven't heard of this before.
    I really hope one day that it does go away.

  2. You really are such an awesome woman. To be even blogging is testament to your strength of character. I hope it goes away, I really do, and will continue to have everything crossed for you. My partner has residual pain from nerve damage due to his Meningitis and his is tiny compared to yours, but I know how much it grinds him down. You are an amazing person Anne xx

    1. Your too kind Jenny, I just do what I have to do and try no to let things get me down. I'm forever hopeful and always positive, you have to be xx


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