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Chronic Pain members - Welcome, please introduce yourself
Chronic Pain | Last Active: 21 hours ago | Replies (7049)Comment receiving replies
Hi, @dmac5 I've seen CRPS mentioned from time to time but I really know nothing about it. What doctors is she seeing? How is a diagnosis of CRPS made? It sounds painful, and I surely feel for her and you. I have small fiber peripheral neuropathy with pain pretty much in my feet and ankles, and tingling and pins and needles up to me knees.
Finding treatment and medications can be an arduous task, to say the least. It has been for me. Has she found anything that gives her some relief?
There may be a discussion about CRPS here at Mayo Connect. I'll try to find out. Welcome to Connect. It's been a significant part of my support system for several years. I hope you find some answers soon.
Jim
Replies to "Hi, @dmac5 I've seen CRPS mentioned from time to time but I really know nothing about..."
Thank you. CRPS is diagnosed with severe burning pain (normally to any limb) after any injury (but not always). The pain worsens and pain does not fit the initial injury; pain scale above child birth. Brain pathways cross and send signals there is still pain, overcompensating. She is under care of pediatrician, physical therapist and psychologist as it is also labeled "suicide disease"; depression can set in quickly. Have spent several weeks, researching, education, vetting therapies/clinics all over the US for children. There are several 9-5 programs: focus on desensitation, intense rigorous physical therapy 5x/week for up to 12 weeks. etc. One therapy I'm exploring right now, that can also help relieve peripheral neuropathy is Calmar Scramble Therapy, have you heard of it?
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@dmac5 I found a discussion by going to the home page and typing CRPS in the search box. It has been active for two years, so you might get some ideas by browsing through the posts.
Best of luck.
Jim