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I’ve had this for 2.5 years. Severe pain in legs and arms 24/7. Been to many doctors and tried cymbalta, max doses of gabapentin and lyrica, tramadol, and now 5mg oxycodone. The oxycodone currently helps the most but i think my current doctor doesnt want to refill it so im going to run out. Im so ready to just end it. Is there any specialists that actually give a damn and will help me?
I wish I had a better answer for you, but right now...there are not many people out there that have any inkling of the hell that this is.... I have had this for 14 years...
Have you tried G-Agmatine-Sulfate? R-ALA? Other supplements? Opioids can actually make it worse - but I totally get where you are coming from (I used to be on Fentanyl 125 mcg patches every 48 hours...and even that wasn't enough)....I got off of that stuff in 2017...while I do burn all day every day - my body is not as toxic...so at least I feel the burning is slightly less -although not by much margin...
Always here if you want to reach out. I've tried over 200 things over the years...I've also seen probably around 200 doctors...no doctors know what to do with this. There are a few in the country that will work with you but I have not seen them and they have long waiting lists...
Dr. Farhad
Dr. Chemali
Dr. Chopra
Dr. Pestronk
To name a few. I have actually seen Dr. Pestronk at Wash U. He is a good guy that is very much concerned for the wellbeing of patients that have this, and actively is pursuing much research to try to find better treatments. At least as of the time that I saw him.
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