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Axonal Sensorimotor Polyneuropathy: Looking for someone to relate
Neuropathy | Last Active: Jun 27, 2023 | Replies (27)Comment receiving replies
@laurask
SSSSAP - that's a mouthful. I have idiopathic small fiber polyneuropathy that started with tingling and numbness in my feet and legs below my knees. After a time the burning pain began in the balls and heels of both feet, and now is in the whole feet and ankles. By the end of 1916, the pain had become unbearable, so I had a spinal cord stimulator implant in June of 2017. That gave me 75% pain reduction that continued for a year. After that, I have had to have the stimulator amplifiers adjusted every three months. I guess it's still giving me some relief. It's hard to know sometimes, what with the meds I take - which one is treating the pain and which ones aren't.
I also have autonomic neuropathy, and none of the doctors will say if it's the cause of several other things that are going on in this aging body of mine. Double vision, esophageal dysmotility, etc. Neuropathy is no laughing matter, is it. Have you found anything that eases the pain? Medications and non-medication? My prayers and best wishes from here to you.
Jim
Replies to "@laurask SSSSAP - that's a mouthful. I have idiopathic small fiber polyneuropathy that started with tingling..."
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Hey @jimhd
Thank you for taking the time to read and respond to my message. Truly means a lot. Reading about your spinal cord implant is very interesting. I take oxycodone three times per day. This provides the most pain relief for me, but over the past week, I’ve developed an itchy rash situation side effect...not fun. Hopefully switching to hydrocodone today. I also take the highest dosage of gabapentin five times per day. I refer to it as “my best friend“. In addition to these, I take a handful of other medications that are supposed to relieve nerve pain. Like you mentioned, it’s hard to say what works and what doesn’t due to the amount of medications taken at once.
This Friday, I have an appointment for a light therapy treatment. My therapist brought it up so I’m going to give it a try even though I’m a bit skeptical. I’ll let you know if it ends up being a successful treatment.
Wish you the absolute best!
Laura