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@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!!

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Replies to "@songfamily2025 Absolutely! I'm so glad to hear you are under good care. I admire you for..."

@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!