What Type of Doctor Diagnoses CRPS/Resource re: Treatment

@rivermaya34
Hi maya34. I am so happy to see your post today. I am suffering CRPS for longtime but conformed after four times Stellate Ganglion shot last year. I was told the first shot is to confirm the diagnosis and the following shots were treatment. But I have no response to those shots at all. My incidence was happened 10 year ago by doing a neck C6-C7 spinal steroid injection. The needle went too far to injured my nerve. I had to scream but the damage was done.I have been having left 5th, 4th finger pain since. I was treated again and again with the same shots for many years until Dec, 2023. My surgeon did C5-C7 fusion due to severe stenosis( But I never have a neck pain. That surgery triggered more pain on my pinky finger. Then I saw the hand specialist. He checked and according to the Budapest rules. He said I have CRPS. Then I went to Cedar Sinai in LA very well known hospital to see a Doctor who is familiar with CRPS. He said to his assistant that for sure I DO have this terrible disorder. I am under a pain specialist care. I am taking Morphine before. Since Morphine is not available in LA . He put me on Oxycodone 10mg Q6h. I also had Ketamine infusion 4 time with a little help. My doctor said the dose is not high enough. I will go back again. I heard one person told me that he had Ketamine infusion continue 5 days. He had no pain for one year. the another time he had no pain for two years. I think that is a wonderful outcome.
How are you doing now? I like to share the treatment with you since your doctor has the same disorder. Because CRPS is not well known disease. A few people heard but the treatment are limited too. I am living in LA, CA. I google it now, There are a little more clinic mentioned Ketamine infusion. Have you tried? What is your doctor's opinion?
Would you please keep in touch with me? Thank you for reading.

@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!!