CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body – her nerves are on fire… it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense… we keep searching for help and guidance… since many do not understand this horrible affliction…. thanks for any advice….

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@bobberoo

Foot issues and CRPS symptoms:

I’ve had CRPS symptoms for over a year and it’s time I go somewhere to get treated and I’m not talking about just nerve blocks small device is inserted in the spine, I need to figure out where to go to get my nervous system re-balanced the Academy injections or lidocaine injections. Help please 🙂

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Hello @bobberoo. Thank you for sharing more of your background with @sueinmn so that she and other members can provide you with support you are seeking!

Because there is an existing discussion on CRPS, you will notice that I have moved your post here: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

I've done this so that you may also connect with other members going through similar situations. Members such as @nursejudith @suecutuli and @grannyzoo may be able to join you as recent contributors to this discussion to share some additional support.

Do you have an appointment scheduled somewhere at this time or are you looking for care recommendations?

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@amandajro

Hello @bobberoo. Thank you for sharing more of your background with @sueinmn so that she and other members can provide you with support you are seeking!

Because there is an existing discussion on CRPS, you will notice that I have moved your post here: https://connect.mayoclinic.org/discussion/crps-anyone-suffering-with-chronic-repetative-pain-syndrome/

I've done this so that you may also connect with other members going through similar situations. Members such as @nursejudith @suecutuli and @grannyzoo may be able to join you as recent contributors to this discussion to share some additional support.

Do you have an appointment scheduled somewhere at this time or are you looking for care recommendations?

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I want to get better but I honestly don’t even know where to start. I’ve seen so many specialist here in Alaska but of course healthcare is pretty sparse up here and I am sure I’ve got some kind of nerve issue in my feet which is causing the CRPS and I would love to come there for a multidisciplinary approach but I’m not sure how I would pay for it. That being said, I am currently 80% disabled through the VA and they pay for most care so I do wonder if there’s a way I could be seen there for treatment. I just want my life back. Let me know if you can think of anything, God bless!

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@grannyzoo

I have CRPS. I’m sorry to hear you do, too. I went to an anesthesiologist who specializes in pain management. I could not get any type of medication to work on my body. My CRPS is in my legs. In March I had a permanent spinal cord stimulator implanted in my spine. I am using the Boston Scientific one. It has taken some time to adjust to it however, I do not regret putting this in at all! I strongly recommend it.

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Just a follow up to my implant. It’s a miracle! I am moving so much better and the pain is drastically reduced! I’ve started water aerobics from the waist down. Going three days a week. After the scar tissue fuses around the wires in the spine I’ll be able to do more with my upper torso. Almost daily I’m feeding better! Waking. Cleaning the house! My normal routine plus exercises now. Once the swelling went down around the battery there was a huge improvement!

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I shattered my elbow on 2/14/21. Six hour surgery to repair on 2/16/21. Dr. had to insert 12 screws and 2 metal plates. Very painfull PT summer and fall 2021. On Narco for pain releaf. Second surgery for elbow 2/18/22. Pain much worse after 2nd surgery. Hand and wrist started swelling. 4/1/22 seggion diagnost me with CRPD. My pain DR. has had me on gabapentin 800mg. 3 times a day and several opiods but still in severe pain. I have not slept more tha 2 hours in a given night since March 10th. On 6/11/22 CRPD went from just being from elbow to finger tips to now totally knumb all the way up arm to entire left side of face and in last 2 weeks it has started impairing my vision of left eye. ER told me no stroke but CRPD expanding. I can not find any expert in Pittsburgh, Pa. area that will accept my Medicare insurence. Any idea's? I need Help! Darryl

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On 2/14/21 I had a bad fall and shattered my elbow. The sergeon had to use 12 screws and 2 metal plates to put it together. Received painfull PT until 9/1/21. Used Gabapentin 800mg. 3x per day and Narco 3x per day. On 2/19/22 I had 2nd surgery on elbow. After this surgery my wrist and hand swelled badly. Servere pain up to elbow. On 4/1/22 my sergeon diagnost me with CRPD. Continued with Gabapentin 800mg and tried several different opiolds. I have not slept more than 2 hours per night since 3/1/22. On 6/11/22, in the middle of the night, i suddenly felt the pain going up my arm covering half mouth, side of face and all the way up covering half of my eye. I went to ER thinking that I may of had a stroke but that was ruled out and told that it was my CRPD expanding but no Dr.'s there could treat. I've been looking all over the Pittsburgh PA. area but can not find a specialist that treats CRPD and takes my medicare insurence In the last 10 days my eye sight has startyed to be effected. Please help! I don't where to turn. Darryl

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@drg24242

I shattered my elbow on 2/14/21. Six hour surgery to repair on 2/16/21. Dr. had to insert 12 screws and 2 metal plates. Very painfull PT summer and fall 2021. On Narco for pain releaf. Second surgery for elbow 2/18/22. Pain much worse after 2nd surgery. Hand and wrist started swelling. 4/1/22 seggion diagnost me with CRPD. My pain DR. has had me on gabapentin 800mg. 3 times a day and several opiods but still in severe pain. I have not slept more tha 2 hours in a given night since March 10th. On 6/11/22 CRPD went from just being from elbow to finger tips to now totally knumb all the way up arm to entire left side of face and in last 2 weeks it has started impairing my vision of left eye. ER told me no stroke but CRPD expanding. I can not find any expert in Pittsburgh, Pa. area that will accept my Medicare insurence. Any idea's? I need Help! Darryl

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Find an anesthesiologist that specializes in pain management. I am not sure if UPMC has anyone that is knowledgeable in CRPS.

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@grannyzoo

Find an anesthesiologist that specializes in pain management. I am not sure if UPMC has anyone that is knowledgeable in CRPS.

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First of all, thank you for replying to my posting. I will take your advice and call UPMC customer service and see if they can give the name of an anesthesiologist that specializes in pain management. I will ask if they have anyone that has knowledge in CRPS. I'm not sure how I would get to an appointment but I will cross that bridge if it comes to it. Thank's again. Darryl

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@grannyzoo

Find an anesthesiologist that specializes in pain management. I am not sure if UPMC has anyone that is knowledgeable in CRPS.

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I was just looking online at the Cleveland clinic. Apparently they have recently taken five new different approaches to CRPS. They are approximately two hours from Pittsburgh but it might be a spot that you would want to check into. I would check with their “nurse on call” and go from there. They could possibly give you the name of someone in Pittsburgh area that could help you. The other thing that I did, and it just might have been a stroke of luck, was I contacted the Mayo clinic in Jacksonville, Florida. I asked to speak with someone knowledgeable of CRPS. (I was desperate!) They are the ones that directed me to my physician at the University of North Carolina. Take a shot and give them a phone call and ask them if they know if anyone up in the Pittsburgh area that could guide you. What have you got to lose? I wish you the best of luck! This disease is nasty. My prayer for you is that you get as lucky as I have with my spinal cord implant! The key thing I learned was I needed an anesthesiologist that specializes in pain management. Don’t forget you have AGH. They are excellent, too! (Obviously, I’m originally from Pittsburgh and Cleveland. I’d start with UPMC and AGH. If all else fails move to Raleigh, NC! 😁)

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@grannyzoo

I was just looking online at the Cleveland clinic. Apparently they have recently taken five new different approaches to CRPS. They are approximately two hours from Pittsburgh but it might be a spot that you would want to check into. I would check with their “nurse on call” and go from there. They could possibly give you the name of someone in Pittsburgh area that could help you. The other thing that I did, and it just might have been a stroke of luck, was I contacted the Mayo clinic in Jacksonville, Florida. I asked to speak with someone knowledgeable of CRPS. (I was desperate!) They are the ones that directed me to my physician at the University of North Carolina. Take a shot and give them a phone call and ask them if they know if anyone up in the Pittsburgh area that could guide you. What have you got to lose? I wish you the best of luck! This disease is nasty. My prayer for you is that you get as lucky as I have with my spinal cord implant! The key thing I learned was I needed an anesthesiologist that specializes in pain management. Don’t forget you have AGH. They are excellent, too! (Obviously, I’m originally from Pittsburgh and Cleveland. I’d start with UPMC and AGH. If all else fails move to Raleigh, NC! 😁)

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Thank's for your continual suggestions and prayers. I will follow up. Thank's again! Darryl

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Hi, I having a rough time with my crps, this week. MY pain is like a roller coaster it has it ups and downs, it's the twist and turns that get me down. The twist and turns I am referring to is when I do things around the house it hurts more now than it did earlier in my journey. I am wondering if anyone feels or is going through the same difficulty with crps. Thank you for listening to me and I know I can get through this, but thank you.

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I am so sorry this is happening, I know there are a few others on here with this. Not sure if this will help but I know that the we have an immunologist here in Naples that treats this with IVIG infusions…not sure the outcomes but it could possible be am option if you can find one in your area. I am suffering from small nerve fiber neuropathy which is incredibly painful and I am seeing an integrative pain management doctor and also having tons of tests to find out the cause, it too is extremely painful. I have an appointment with immunologist but not until October which is crazy. Hoping this might be help on those tread…

Take care…

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@leigh17

I am so sorry this is happening, I know there are a few others on here with this. Not sure if this will help but I know that the we have an immunologist here in Naples that treats this with IVIG infusions…not sure the outcomes but it could possible be am option if you can find one in your area. I am suffering from small nerve fiber neuropathy which is incredibly painful and I am seeing an integrative pain management doctor and also having tons of tests to find out the cause, it too is extremely painful. I have an appointment with immunologist but not until October which is crazy. Hoping this might be help on those tread…

Take care…

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Hi and to all my friends in pain…… I SAY PLEASE ADD A FEW WORDS thru out the day TO PRAYER.
Seek and you will should find. Oooh yeea.
Please excuse me if intruding here. Am only telling all of us pray to whom you like BUT do it ok.

BY prayers I know, I have come to know you all here at MAYO CLINIC.
How?
BY A FRIEND IN CONVERSATION AS I WAS IN MY OWN BUSS
PREOCCUPIED DID NOT BRING MY PAIN PILLS.

Well, here I am. Been 4 months y'all.
I have done more lately with everyone's comments than in my 14 yrs with this P. N ON THE FEET BOTH, NOW ON HANDS.
AND WORSENING.

J bisshop has provided a lot and thru his comments, have done a few other things not one of my NEOROS/ PAIN MNG/ And or PRIMARY DRs have even suggested I do even on my own personal “RISK” …

THE IVS DID NOT DO A THING FOR ME. Nor the injections. Also very expensive. Make sure the INSURANCE IS COVERING. Mine did not $68K in question now.

Bye now

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