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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Hey was diagnosed in April of this year looking to network myself last few months have been extremely difficult give a shout always available to shoot the breeze

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Hi everyone. I am reposting a comment I made recently for hopes that those who are seeking more in-depth understanding with CRPS have the resources they need. Remember though, not all people will get all the symptoms described in these articles, they are good guidelines of what things could look like and signs to look out for.

Google Medscape and CRPS, account sign-up is free. Search CRPS. Articles are high quality.

Copy and paste to Google: An-Update-on-the-Pathophysiology-of-Complex

Typically I search for things in the past five years for medical journals. Google peer-reviewed CRPS. Click scholarly articles peer-reviewed CRPS. You can search by years for how back you want your search to go. Using keyword searching with quotations, minus signs, or the word and, you can pinpoint what you really want to find and what you want to hide from your searches. Hopefully the articles above increase understanding and help anyone who would like to know more in-depth. I'm no expert, but I read a lot into this disorder because it drives me crazy, but I feel educating myself thoroughly I can then communicate effectively with physicians.

Another good site search: Google (redundant, sorry) warm and cold crps

Hope everyone has a great weekend!

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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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Hi T2020.My name is Darryl. I have ha CRPS for a little over a year. Mine started with fall that shattered elbow. A year ago they had to remove all of the screws and plates. After second surgery the severe pain would not go away. Diagnost with CRPS from elbow to finger tips. In last 3 months CRPS has expanded up to side of my face. I , just this week, have been approved by my orthopedict surgeon to do a trial of a spinal stimulaor. I've been told that it will take about a month for the insurence to approve. After that I will do trial and if get 50 to 60 pecent pain relief will have permanent put in. In the mean time I am using Buprenorphine patches. Used for drug addicts. I started with 10 mcg and now on 15mcg/hour. It is helping a good bit except when I use arm to much.Maybe you shoul try. Good luck.

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