CRPS and My Virtual World

2 years 1 month ago #29731 by Canjam
Replied by Canjam on topic CRPS and My Virtual World
Hi again,

Still trying to learn my way around here so miss the replies.
Thank you for sharing your stories. It’s very apparent that everyone handles CRPS very differently.

I’ll have a look into the book you have read too, Josie. Some items in the book I’ve read contradicted what others had said and other things just didn’t work at all either.

Rosie, did you give up on hand therapy or you still continue to go? Is there anything particular you have found has helped with the hand? Did yours only stay in the hand area or pains worsened?

Question, has anyone found they’ve lost feeling in some areas which is affected by the CRPS? Not the pins and needles/numbness but actually delayed reaction/no reaction at first. Not sure if this is CRPS or something else. In the last few days I have cut 2 fingers and my arm. Of course they are the worst affected areas I suffer from with my CRPS but for the life of me I can’t tell you how 2 of them happened and the other one I knew happened yet didn’t hurt for a few minutes which now looks like it may be getting infected. I find it interesting the way it’s reacting to some trauma given I can’t wash and dry my hand without pain/sharp stabbing feelings then I injure myself and didn’t know.

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2 years 1 month ago #29733 by Rosie
Replied by Rosie on topic CRPS and My Virtual World
Hi Canjam, I tried hand therapy, but it had taken 19 months to get diagnosed, so my hand was already in contracture. I am unable to straighten my hand or bend my fingers.
When they tried hand therapy, a gentle massage set off a severe spasm lasting for over an hour. I was told by another, there wasn't much they could do.
After a few months I noticed similar feeling in my other hand. And a few months later, I began to get the tingling, shooting pains, and burning in my feet. I've been told I have generalised pain, and have had symptoms in most parts of my body.
The condition is different for everyone, and it progresses in different ways.
It's good to know you're not alone in this, that there's always someone to listen.
This condition is something that changes over time, and you try your best to adapt.
Take care, Rosie.

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2 years 1 month ago #29741 by Josie
Replied by Josie on topic CRPS and My Virtual World
Hi Canjam
The reason I like the Pain Book was due to the emotional, depression etc aspects of having CRPS, I did not find any books helpful in changing my pain although some books do address pacing. Thanks for giving me feedback and for checking it out.
Loss of feeling to the point of injuring yourself is a concern to discuss with your doctor, I have changed feeling in the area of my foot where the surgery cut nerves, it is kind of dead yet capable of feeling severe shooting pains at random.
I hope you get some answers soon to this problem, I have read that some CRPS people disown their affected limb, that it doesnt feel like it belongs to them!
Anyway as the others say we are hear to listen and help where we can, we need each other.
best wishes Josie

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