Quote:
Originally Posted by Optimistic2day
Great Thread!
My 10yr old daughter had CRPS in her right ankle and foot, and just as it appeared to get better she got multiple problems and pain in her abdomin - bladder kidney and bowel problems and significant right flank pain which has reduced her mobility hugely, more than the foot did. This has ultimitley been diagnosed as CRPS migration.
When we go anywhere I have:
Heat packs, microwavable or the chemical mix type when on the move.
Very soft blankets and pillows to snuggle, plus favourite bear.
A soft sponge ball, that she uses as a distracter when in severe pain, and crushes if its unbearable, as she was causing herself thumb joint injures before by crushing her thumbs when in agony.
A palm tablet computer as distracting games using her fingers do seem to calm pain spasms.
Worry beads - as above.
A range of stupid talking games that are very silly and can make her laugh that seems to help.
The pains will happen, and we find ways of getting mentally away from them before they really set in and reinforce themselves works 9 out of 10 times.
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I have had CRPS for several years now. I have 4 children ages 8,10,12,and 14. With plans to have more until this disease struck. I realize you wrote this post some time ago. I have full body CRPS and am wheelchair bound. I understand that sometimes we don't want others to see us as victims or feel sympathy for us, and I hope not to offend, but today I just read your post and my heart broke, and I could hardly hold back the tears. Poor little sweetheart. It's so hard for adults to cope. This disease is something that is so much harder than anything I've ever been up against. She is one strong little girl, and you sound like an AMAZINGLY strong resourceful Mom. I'm a praying person, and I'd like to pray for her and your family. Sincere best of luck in this journey.
