What Type of Doctor Diagnoses CRPS/Resource re: Treatment

@songfamily2025 Hey there friend! I'm SO sorry to hear of your ongoing challenges...what a difficult battle you are fighting, but you are very brave not to give up! As I was reading your post, I could *literally* feel your pain. Ouch! You are exactly right - CRPS (RSD) is known about, but underdiagnosed and not talked about enough. It's so complex, I realize, and very hard to get right because each individual is different and no case alike. I've heard so many mixed reviews about any kind of fusion surgery, especially the cervical kind like you had. I would be very hesitant to let anyone mess with my neck unless it was nearing life or death, or absolutely necessary, to say the least. I am very glad to hear you are receiving care - hopefully it's taking the edge off and giving you relief enough to function and enjoy life as best as you can. CRPS is definitely a "new normal." I never took morphine or ketamine, although Ketamine was next on my list to pursue. However, I'm waiting to see how this new track I'm on will pan out - plus, some outside factors have changed, i.e. less constants - but I'm very interested and have heard all good things about Ketamine infusions, including what you mentioned - the long-term pain relief, for however long that may be. There are some places here where I live that do it and I know my neurologist would be on board if I ever suggested it. He is a wonderful advocate on my behalf! I wish everyone could be under his care - he's the model Dr, honestly. Both he and my pain Dr's know about CRPS (my pain DR actually lives w/ CRPS, so it's very personal for him). Yes, of course - I'd be happy to keep in touch. I try to get on here somewhat regularly, but sometimes life gets in the way, so please don't take it personally if radio silence happens from time to time. Sending good thoughts and wishes your way!! Sorry you have CRPS, but glad in one respect because you are another kindred soul who can raise awareness and help others deal with this tough disease. You are an encouragement to me!

@rivermaya34 Thank you for your quick answer. Reading your profile made me realize that you have a lot pain every day and yet you are out to encourage people like me. I admire your spiritual strength. Like you I do have a pain management doctor who is very understanding and sympathetic. I am on narcotics on the clock, I wonder how you manage your pain from all the different problems you have without narcotics. What new track are you on, can you share that with me? How many years have you been suffering from CRPS and how was it treated?

@songfamily2025 Absolutely! I'm so glad to hear you are under good care. I admire you for being able to function on narcotics - those drugs are good, but they put me to sleep. I only use those for post-surgeries. It's really hard to say exactly how long I've had CRPS, but I can 100% confirm and track it back to 2019. However, my hunch is that it started several years earlier (around 2012) and was exacerbated after a traumatic surgery that involved complications (it's a long story). Right now, I'm taking Gaba / Keppra 750 ER / Zofran - that usually keeps it at bay - but, I've also got a spinal cord stimulator (for upper body) that's been a godsend since day one. Currently, this is the third time of tapering down off Gaba because I want to get to 0mg so I can trial a second stimulator (for lower body) and hopefully pursue a permanent one(s). End goal is to get off all meds (or most - for sure, Gaba) and rely on stims mainly. I'm very sensitive to touch, though, and I get very nauseous also with CRPS, so it just depends on the day how I handle it - sometimes, I use compression sleeves (tubigrip is the best, in my opinion) and KT tape; but, if I am unable to tolerate any air movement or touch, then heat always helps or I just wear tank tops and try to medicate so I can sleep it off. If a flare is really bad (typically, 5 days for me), then I just have to grit my teeth through it. Keeping my mind preoccupied is key for me, as simple as that sounds. In my younger days, being active was great, but now I am unable to do much physical activity. Of all the meds I've tried, I'd say that Gaba/Keppra ER have been the best combo for taking and keeping the edge off. I did like Lamotrigine (regular, not ER), but I got the allergic rash so I had to stop. Keppra is closest thing comparable for me. I have not tried Ketamine yet, but I will soon be doing infusions for my migraines, so I don't want to shake everything up at once. My next move (down the road) is to work with an adhesion specialist because I believe that might be key in alleviating a lot of pain. But, I'm very very very sensitive to touch, so that makes me nauseous even thinking about it. I'm curious to hear more about your journey also, and if you've already posted that somewhere, I'd love to read it so you don't have to retype. Thanks for any info - super helpful!!

@rivermaya34 Hi Thank you for your quick reply! By reading your medical journey that makes me feel sad. You are a young lady and have been suffered so much. Also, I can tell you are a such a strong person and fight every day not only to survive but wanting to have a good quality life. I am 69 years old and I was a RN worked in Labor & deliver Dept for many years. Because the job related injury I had Microdiscectomy. Unfortunately, My nerve was injured during the surgery. I became disabled in 2003 .In the next 5 years I can not sit for 5min. So the Lumber L4-L5 Anterior and posterior fusion followed. My Orthopedia surgeon did very good job. That was why when I had neck stenosis I consult him. He did a good job too. But no one anticipate that surgery will trigger the original injury 10 year ago (the epidural injection ) lead to CRPS. My 5th finger pain is excruciating. I use Heat Pro all the time and plus the heating pad. The narcotic help me a lot but No one can explain to me why I can not sleep at night. The pain woke me up every 2 hours despite the painkiller. No wonder the CRPS has a nickname " Burning night"
In 2024 before my birthday I had a CT scan to check my heart because I had a few times Angina. The cardiologist called me saying your heart was OK but we found that your breast had a mass. I went for U/S + biopsy right away. I have ER+ Her2- Breast cancer. That was my 68 Birthday gift. I was in shock!! I had mastectomy without reconstruction. No Chemo needed. But I have to take Letrozole 2.5mg for 5 year. I started in Aug.1st 2025. I was so depressed and on antidepressant meds. too. I feel totally lost for the first time in my life. How can I say,I tell you because we are on the same boat and we understand each other how painful it is to have such disorders. We have to be strong. Shall we fight together my friend!

@songfamily2025 Hey - sorry for the delay in response! This week has been one of the worst ever (physically) for me...feeling like I'm being burned alive from the inside out (this is totally new), so touching anything or being touched has been unbearable (still painful); that's why I didn't respond until now. Yes - quality of life is what I advocate for on a daily basis. Even if I only get a few mins or an hour a day (or week), that's good enough for me. Baby steps. I don't set any expectations, that way my hope is never crushed. Bad days - yes. But, I am thankful for any day over none at all. You are NOT kidding about the CRPS - it literally "burns" beyond reason and I wouldn't wish it on anyone. Pain has been keeping me awake most nights here lately, too. I'm so sorry about your traumatic surgery - I can relate there, too. Unfortunately, once the damage is done, it's done; no going back, only forward. I used to think that "standing still" was a setback, but now I understand it's self-preservation and I'm thankful for "time out" or "pause" moments that help bring things back into perspective. Ugh.....that hurts my heart about what you're walking through. At least you were able to have the surgery and get the problem removed before it got ugly! My 33rd bday present three years ago was surgery that revealed colon cancer (they removed it). Sad thing was, I smiled bc my "worst bday" had finally been topped after 22 yrs (my bday is 9/11), so there was good that came out of it. I've been through many depression periods that have ebbed'n'flowed, especially last year, when 7 friends of mine died in 10 days. That took me down hard and fast. The mental paralysis reset my clock battery, which was painful, yet I am very thankful for. Yes, we are in this together! Glad you're here, friend 🙂 There are better days ahead...

@rivermaya34 Hi my friend, By reading your last letter, my heart was bleeding and my stomach was aching. I cried that I just can not digest so much of sad and tragic events you had been through. I got up 2-3 times at night to take painkiller but at least I can sleep a few hours. But you don't take narcotic and don't sleep. In 24 hours how can you function the way you did I can not imagine. My b-day was 9/8. We are all Virgo no wonder we have similar characters .I am glad to have you at my side. You are my true hero! I am so sorry to hear that your 7 friends gone in 10 days. You must have a strong family and friends supportive circle those can assist you to go through each tragic event! I am the only child and I don't have child. I stopped working in 2003 and my hospital was closed in 2005. So you can imagine how many friends do I have. Almost nil. Now I have you. I must learn from you how to fight and survive in the worst scenario. Thank you so much for sharing your experience that will make me stronger. Yes, You are right we both looking forward to having better days ahead...

@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!

Hello All,
Im waiting on a colonoscopy, so I didnt read or digest all, bjt I was diagnosed CRPS 5 yrs ago. Yes it literally feels like you're burning alive. Mine all start years ago from medical neglect. A small injury became very serious. I never fully recovered .
Good luck to all with CRPS.

@anniesezu812 *BIG HUGS* to you, friend!! It's horrible. Best wishes on your upcoming procedure! 🙂 Glad you're here!

@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.