What Type of Doctor Diagnoses CRPS/Resource re: Treatment

@rivermaya34 Oh that's the sweetest reply ever River, THANK YOU!!!!! 💓
Yes due severity of " burning " pain, the mind goes wild but everything looked great. Huge relief!!
I follow Joe Dispenza, he is helping me change my brain's neuroplasticity, very important for we chronic pain sufferers. Google his disciples Stories of Transformation everyone, be blown away how people healed themselves!! I paid for Gaia to watch Rewired ( the brain that is) its all science based/ No hocus Pocus.....For chronic pain it takes longer than cancer patients to heal i've noticed...usually 2-3 years but hey a FUTURE with no pain, im in!! Wishing everyone well ....YES CRPS SUCKS...But the support here is 👏 amazing!!!👏👏💓💓💓Dr Joe says, thoughts can make you sick, thoughts can heal you. We luv the Mayo Clinic but when they cant help, we gotta help ourselves. God Bless.

@songfamily2025 I could say the same of you and so many others here in this community! I am honored to be a part of such brave souls who battle things on a daily basis and yet don't give up the fight. Everyone is always encouraging each other and giving support and feedback where we can. It's amazing! Thank you for your kind words. Exhaustion finally set in Saturday night and I was able to soundly sleep for enough hours to carry me through today, so I'm grateful. The intensity of the pain has gone down, so I try to increase my normal activities during these windows of opportunity, no matter how long or short they may last. Yes - last fall hit me pretty hard; I was not expecting that. I'm thankful for the darkness that I've walked through since day one of my life because it has taught me so much and keeps my hope alive! My strength comes from deep within - a source beyond myself. I take no credit for my victories, only my obedience to set my feet in forward motion. That's so neat that our birthdays are so close!! 🙂 September is a good month! Even though you are not working, I'm sure if you look around, you will see you are surrounded by people who love you, and you have newfound friends here, too! You are not in this fight alone. I'm really glad to hear you could get a few hours sleep and take something for the pain - that's a blessing in itself! Sending hugs and joyous thoughts your way! Hope it's a good day for you!

@rivermaya34 Hi my friend, I am very glad to read each letter I have receive from you. Your age can be my daughter age if I had one. Lately, I am not doing well. I am very much disturbed by someone who I care so much but he is sick. So please forgive me that I will write to you when I have passed this very tough and unusual period. May hope be with us forever.

@songfamily2025 Please don't EVER feel the need to apologize to me - for anything - especially for enduring hard times and deeply caring. You are a vibrant piece of this beautiful puzzle that is allowed the grace to take time out for you. You don't owe anyone an explanation, not even me. So, no worries! 🙂 I am SO deeply sorry to hear about your dear friend ... I am grieving alongside you 😓 and you have my empathy 🌺 I will be remembering you in my thoughts and sending care your way. I hope you will be able to rest, as you are able, during this time. Yes, we must keep hope alive! *hugs*

Hello fellow CRPS warriors. I was diagnosed with CRPS in 2021 after a year of trying to find out what was causing the burning and pain. I had 3 surgeries back to back and a biopsy and then 3 days post op from the 4th surgery I felt like my upper left back and arm was being burned alive or like someone had thrown acid on my skin and knew something was wrong. I went back to my surgeon and he basically blamed me and told me that I was too skinny and I needed more time to recover for the surgery but I knew something was wrong. I had had bigger surgeries with less pain so I began searching for answers and stopped going to him after him blaming me over and over again even after I “healed” from that surgery and between 2020 - now I have seen around 40 doctors. About a year year after that surgery I went to to my neurologist and him at first they they said I had allodynia and put me on some maxalt medication but after an EMG and a couple more follow up visits 2 partners came in and broke the news that I had what they called RSD and referred me to a pain management specialist who confirmed that it was CRPS. I had just turned 35 years old and was told that there was no cure for it and I would have to navigate this for the rest of my life. The thought of having to deal with it felt like a death sentence and still does if I am being honest. I began researching it and every treatment that I could find. Creams,Medication,ganglion block, peripheral stimulator, lidocaine, ketamine infusions and pills, therapy, medical marijuana and gummies, meditation, prayer and any option available except morphine and fentanyl because I was too scared to go go down that road but unfortunately for me with nothing really helped longer than a few days maybe a week or two if I got lucky. I am on a pretty high dose of ketamine for being 120 pounds (1250 mg now) and have even gotten so depressed that I looked for and paid for MAID. This diagnosis takes everything out of you and unfortunately for me I also have Sjögren’s Syndrome, Chronic ITP,masses in my breast, axilla and thyroid, sores from head to toe that often open up and bleed, bulging disc from c3-c5 from an old car accident but made worse since I have to “sleep” rather more like naps sitting up so my skin doesn’t touch anything. I am limited to bathrobes at home or hoodies even if it’s 100 degrees outside or have to put surgical gauze for like people with severe burns just to wear clothes that fit loosely or to feel semi normal. I have been to maybe 5 functions with family and friends since 2020 and have been outside of NY maybe twice but only for doctors. I used to travel with my friends or go to family gatherings, always wanted to be a mom but I am too high risk so I had to end a 15 year relationship because he wanted kids and I knew I couldn’t give him it and I knew he would stay because he loved me and was willing to stay even when I was diagnosed… CRPS takes everything from you and finding help in NY is extremely difficult which shocked me since we have great hospitals but most doctors don’t want to take on the liability of a patient with CRPS. I just found a neurosurgeon that is willing to do a SCS but only does permanent implant and the neurosurgeon he referred to to get the trial doesn’t seem interested, maybe he is overworked or too cocky but he’s doesn’t have a friendly attitude or demeanor or interest…. It’s hard to even get his office to respond so I don’t think he’s a fit for me. Plus insurance has changed since 2026 and is giving me a hard time even though I am disabled. It’s an uphill battle every day sometimes every hour to deal with the pain of CRPS and it’s an emotional and mental roller coaster as well. It’s like watching your life pass you by and being unable to do anything to actually live again even though you’re fighting as hard as you can and try to do it and still smile when you’re on fire. If there’s anyone out there that can help me with advice or guidance or that have value overcome some of CRPS obviously since there’s no cure but maybe come out the other side a little please let me know how and where you were able to get help from. While I would appreciate any advice, I would appreciate more so what I can do that maybe I haven’t done. I have no idea how I can make it 10-20 years with CRPS.

Hello fellow CRPS warriors. I was diagnosed with CRPS in 2021 after a year of trying to find out what was causing the burning and pain. I had 3 surgeries back to back and a biopsy and then 3 days post op from the 4th surgery I felt like my upper left back and arm was being burned alive or like someone had thrown acid on my skin and knew something was wrong. I went back to my surgeon and he basically blamed me and told me that I was too skinny and I needed more time to recover for the surgery but I knew something was wrong. I had had bigger surgeries with less pain so I began searching for answers and stopped going to him after him blaming me over and over again even after I “healed” from that surgery and between 2020 - now I have seen around 40 doctors. About a year year after that surgery I went to to my neurologist and him at first they they said I had allodynia and put me on some maxalt medication but after an EMG and a couple more follow up visits 2 partners came in and broke the news that I had what they called RSD and referred me to a pain management specialist who confirmed that it was CRPS. I had just turned 35 years old and was told that there was no cure for it and I would have to navigate this for the rest of my life. The thought of having to deal with it felt like a death sentence and still does if I am being honest. I began researching it and every treatment that I could find. Creams,Medication,ganglion block, peripheral stimulator, lidocaine, ketamine infusions and pills, therapy, medical marijuana and gummies, meditation, prayer and any option available except morphine and fentanyl because I was too scared to go go down that road but unfortunately for me with nothing really helped longer than a few days maybe a week or two if I got lucky. I am on a pretty high dose of ketamine for being 120 pounds (1250 mg now) and have even gotten so depressed that I looked for and paid for MAID. This diagnosis takes everything out of you and unfortunately for me I also have Sjögren’s Syndrome, Chronic ITP,masses in my breast, axilla and thyroid, sores from head to toe that often open up and bleed, bulging disc from c3-c5 from an old car accident but made worse since I have to “sleep” rather more like naps sitting up so my skin doesn’t touch anything. I am limited to bathrobes at home or hoodies even if it’s 100 degrees outside or have to put surgical gauze for like people with severe burns just to wear clothes that fit loosely or to feel semi normal. I have been to maybe 5 functions with family and friends since 2020 and have been outside of NY maybe twice but only for doctors. I used to travel with my friends or go to family gatherings, always wanted to be a mom but I am too high risk so I had to end a 15 year relationship because he wanted kids and I knew I couldn’t give him it and I knew he would stay because he loved me and was willing to stay even when I was diagnosed… CRPS takes everything from you and finding help in NY is extremely difficult which shocked me since we have great hospitals but most doctors don’t want to take on the liability of a patient with CRPS. I just found a neurosurgeon that is willing to do a SCS but only does permanent implant and the neurosurgeon he referred to to get the trial doesn’t seem interested, maybe he is overworked or too cocky but he’s doesn’t have a friendly attitude or demeanor or interest…. It’s hard to even get his office to respond so I don’t think he’s a fit for me. Plus insurance has changed since 2026 and is giving me a hard time even though I am disabled. It’s an uphill battle every day sometimes every hour to deal with the pain of CRPS and it’s an emotional and mental roller coaster as well. It’s like watching your life pass you by and being unable to do anything to actually live again even though you’re fighting as hard as you can and try to do it and still smile when you’re on fire. If there’s anyone out there that can help me with advice or guidance or that have value overcome some of CRPS obviously since there’s no cure but maybe come out the other side a little please let me know how and where you were able to get help from. While I would appreciate any advice, I would appreciate more so what I can do that maybe I haven’t done. I have no idea how I can make it 10-20 years with CRPS.

Hello fellow CRPS warriors. I was diagnosed with CRPS in 2021 after a year of trying to find out what was causing the burning and pain. I had 3 surgeries back to back and a biopsy and then 3 days post op from the 4th surgery I felt like my upper left back and arm was being burned alive or like someone had thrown acid on my skin and knew something was wrong. I went back to my surgeon and he basically blamed me and told me that I was too skinny and I needed more time to recover for the surgery but I knew something was wrong. I had had bigger surgeries with less pain so I began searching for answers and stopped going to him after him blaming me over and over again even after I “healed” from that surgery and between 2020 - now I have seen around 40 doctors. About a year year after that surgery I went to to my neurologist and him at first they they said I had allodynia and put me on some maxalt medication but after an EMG and a couple more follow up visits 2 partners came in and broke the news that I had what they called RSD and referred me to a pain management specialist who confirmed that it was CRPS. I had just turned 35 years old and was told that there was no cure for it and I would have to navigate this for the rest of my life. The thought of having to deal with it felt like a death sentence and still does if I am being honest. I began researching it and every treatment that I could find. Creams,Medication,ganglion block, peripheral stimulator, lidocaine, ketamine infusions and pills, therapy, medical marijuana and gummies, meditation, prayer and any option available except morphine and fentanyl because I was too scared to go go down that road but unfortunately for me with nothing really helped longer than a few days maybe a week or two if I got lucky. I am on a pretty high dose of ketamine for being 120 pounds (1250 mg now) and have even gotten so depressed that I looked for and paid for MAID. This diagnosis takes everything out of you and unfortunately for me I also have Sjögren’s Syndrome, Chronic ITP,masses in my breast, axilla and thyroid, sores from head to toe that often open up and bleed, bulging disc from c3-c5 from an old car accident but made worse since I have to “sleep” rather more like naps sitting up so my skin doesn’t touch anything. I am limited to bathrobes at home or hoodies even if it’s 100 degrees outside or have to put surgical gauze for like people with severe burns just to wear clothes that fit loosely or to feel semi normal. I have been to maybe 5 functions with family and friends since 2020 and have been outside of NY maybe twice but only for doctors. I used to travel with my friends or go to family gatherings, always wanted to be a mom but I am too high risk so I had to end a 15 year relationship because he wanted kids and I knew I couldn’t give him it and I knew he would stay because he loved me and was willing to stay even when I was diagnosed… CRPS takes everything from you and finding help in NY is extremely difficult which shocked me since we have great hospitals but most doctors don’t want to take on the liability of a patient with CRPS. I just found a neurosurgeon that is willing to do a SCS but only does permanent implant and the neurosurgeon he referred to to get the trial doesn’t seem interested, maybe he is overworked or too cocky but he’s doesn’t have a friendly attitude or demeanor or interest…. It’s hard to even get his office to respond so I don’t think he’s a fit for me. Plus insurance has changed since 2026 and is giving me a hard time even though I am disabled. It’s an uphill battle every day sometimes every hour to deal with the pain of CRPS and it’s an emotional and mental roller coaster as well. It’s like watching your life pass you by and being unable to do anything to actually live again even though you’re fighting as hard as you can and try to do it and still smile when you’re on fire. If there’s anyone out there that can help me with advice or guidance or that have value overcome some of CRPS obviously since there’s no cure but maybe come out the other side a little please let me know how and where you were able to get help from. While I would appreciate any advice, I would appreciate more so what I can do that maybe I haven’t done. I have no idea how I can make it 10-20 years with CRPS.

Hello fellow CRPS warriors. I was diagnosed with CRPS in 2021 after a year of trying to find out what was causing the burning and pain. I had 3 surgeries back to back and a biopsy and then 3 days post op from the 4th surgery I felt like my upper left back and arm was being burned alive or like someone had thrown acid on my skin and knew something was wrong. I went back to my surgeon and he basically blamed me and told me that I was too skinny and I needed more time to recover for the surgery but I knew something was wrong. I had had bigger surgeries with less pain so I began searching for answers and stopped going to him after him blaming me over and over again even after I “healed” from that surgery and between 2020 - now I have seen around 40 doctors. About a year year after that surgery I went to to my neurologist and him at first they they said I had allodynia and put me on some maxalt medication but after an EMG and a couple more follow up visits 2 partners came in and broke the news that I had what they called RSD and referred me to a pain management specialist who confirmed that it was CRPS. I had just turned 35 years old and was told that there was no cure for it and I would have to navigate this for the rest of my life. The thought of having to deal with it felt like a death sentence and still does if I am being honest. I began researching it and every treatment that I could find. Creams,Medication,ganglion block, peripheral stimulator, lidocaine, ketamine infusions and pills, therapy, medical marijuana and gummies, meditation, prayer and any option available except morphine and fentanyl because I was too scared to go go down that road but unfortunately for me with nothing really helped longer than a few days maybe a week or two if I got lucky. I am on a pretty high dose of ketamine for being 120 pounds (1250 mg now) and have even gotten so depressed that I looked for and paid for MAID. This diagnosis takes everything out of you and unfortunately for me I also have Sjögren’s Syndrome, Chronic ITP,masses in my breast, axilla and thyroid, sores from head to toe that often open up and bleed, bulging disc from c3-c5 from an old car accident but made worse since I have to “sleep” rather more like naps sitting up so my skin doesn’t touch anything. I am limited to bathrobes at home or hoodies even if it’s 100 degrees outside or have to put surgical gauze for like people with severe burns just to wear clothes that fit loosely or to feel semi normal. I have been to maybe 5 functions with family and friends since 2020 and have been outside of NY maybe twice but only for doctors. I used to travel with my friends or go to family gatherings, always wanted to be a mom but I am too high risk so I had to end a 15 year relationship because he wanted kids and I knew I couldn’t give him it and I knew he would stay because he loved me and was willing to stay even when I was diagnosed… CRPS takes everything from you and finding help in NY is extremely difficult which shocked me since we have great hospitals but most doctors don’t want to take on the liability of a patient with CRPS. I just found a neurosurgeon that is willing to do a SCS but only does permanent implant and the neurosurgeon he referred to to get the trial doesn’t seem interested, maybe he is overworked or too cocky but he’s doesn’t have a friendly attitude or demeanor or interest…. It’s hard to even get his office to respond so I don’t think he’s a fit for me. Plus insurance has changed since 2026 and is giving me a hard time even though I am disabled. It’s an uphill battle every day sometimes every hour to deal with the pain of CRPS and it’s an emotional and mental roller coaster as well. It’s like watching your life pass you by and being unable to do anything to actually live again even though you’re fighting as hard as you can and try to do it and still smile when you’re on fire. If there’s anyone out there that can help me with advice or guidance or that have value overcome some of CRPS obviously since there’s no cure but maybe come out the other side a little please let me know how and where you were able to get help from. While I would appreciate any advice, I would appreciate more so what I can do that maybe I haven’t done. I have no idea how I can make it 10-20 years with CRPS.