New to CRPS complex regional paint syndrome: want to talk

Posted by triumph2020 @triumph2020, Jul 30, 2021

Hello, I am new to this, don't know what to expect. I just be needing someone to talk with that's maybe going thru the same thing as I am.

Interested in more discussions like this? Go to the Chronic Pain group.

T2020 , I have been living with CRPS for 3yrs now and still trying to find an answer. Right now I am starting to look at spinal stimulator and a last resort but in the meantime I have found biofeedback to help me mentally on a daily basis. Have to keep positive thoughts and keep doing the things you love. Best of luck

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I had CRPS about 10 years ago. I was diagnosed by a doctor called a physiatrist. The problem was in my ankle and it was so bad I couldn’t use my foot at all. I was on crutches. This occurred after a fall down a flight of stairs. At first it was a sprain that wouldn’t heal them it morphed into CRPS. I was referred to a physiotherapist who had some experience dealing with the condition. I got acupuncture, exercises in hot water, on the floor mats, exercise equipment, and slowly I was able to trade in my crutches for a cane. Today I am happy to say that I am fully recovered. It took over a year of treatment for my recovery. There is hope but treatment does work. Being persistent was key, keeping at it and faithfully doing the prescribed exercises.

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Oh my gosh! Thank you for your prospective on CRPS. I live in NC and am having a terrible time getting help with CRPS in my left foot. I appreciate your positive view on what else I can do. At this moment, I’m the one doing the “doctoring” so to speak. Struggling to find help. Just had the Sprint unit removed from the back of the knee after 90 days. Have a wonderful Pain Management Doctor that doesn’t herd me in like cattle and use a “one cure fits all” attitude. He’s getting approval for the unit to be placed in my spine.

I’m trying to get in with UNC. I will see if I can use your posting to get back into therapy. Again, thank you!!!

I wish I knew of someone besides my pain management doctor that could help. Tried getting into Mayo in Florida but because of Covid I couldn’t.

I’d rather not get this implant.

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Try and get referred to a rehabilitation specialist. Medical doctor called a physiatrist. Can’t help with any suggestions because mine was in Ottawa and at no cost to me because of our universal coverage, and I guess the cost might be considerable if your insurance won’t cover it. Hope that is not the case for you. Good luck.

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@grannyzoo

Oh my gosh! Thank you for your prospective on CRPS. I live in NC and am having a terrible time getting help with CRPS in my left foot. I appreciate your positive view on what else I can do. At this moment, I’m the one doing the “doctoring” so to speak. Struggling to find help. Just had the Sprint unit removed from the back of the knee after 90 days. Have a wonderful Pain Management Doctor that doesn’t herd me in like cattle and use a “one cure fits all” attitude. He’s getting approval for the unit to be placed in my spine.

I’m trying to get in with UNC. I will see if I can use your posting to get back into therapy. Again, thank you!!!

I wish I knew of someone besides my pain management doctor that could help. Tried getting into Mayo in Florida but because of Covid I couldn’t.

I’d rather not get this implant.

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Hello @grannyzoo. Please don't give up on Mayo's Florida Pain Rehab Center. I graduated last October, during COVID, and it was life changing for me. There may be a bit of wait, but it is the the best pain rehab experience anyone could ask for. Have you spoke with Florida PRC and begun the application process?

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I’ll try again. I couldn’t get anywhere last year. Thanks!

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Hi all,
You may also be interested in this related discussion started by @mam14
– Want to talk with others. Have you found relief from CRPS? https://connect.mayoclinic.org/discussion/crps-2/

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@sprinrosa64

T2020 , I have been living with CRPS for 3yrs now and still trying to find an answer. Right now I am starting to look at spinal stimulator and a last resort but in the meantime I have found biofeedback to help me mentally on a daily basis. Have to keep positive thoughts and keep doing the things you love. Best of luck

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Thank you for sharing! You give me hope. It has been 6 months for me and I seem to get worse in some aspects and better in others.

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@grannyzoo

Oh my gosh! Thank you for your prospective on CRPS. I live in NC and am having a terrible time getting help with CRPS in my left foot. I appreciate your positive view on what else I can do. At this moment, I’m the one doing the “doctoring” so to speak. Struggling to find help. Just had the Sprint unit removed from the back of the knee after 90 days. Have a wonderful Pain Management Doctor that doesn’t herd me in like cattle and use a “one cure fits all” attitude. He’s getting approval for the unit to be placed in my spine.

I’m trying to get in with UNC. I will see if I can use your posting to get back into therapy. Again, thank you!!!

I wish I knew of someone besides my pain management doctor that could help. Tried getting into Mayo in Florida but because of Covid I couldn’t.

I’d rather not get this implant.

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Im refusing the implant myself. Im taking the holistic route.

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