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Member Neuropathy Journey Stories: What's Yours?
Neuropathy | Last Active: Oct 17 5:52am | Replies (571)Comment receiving replies
My neuropathy began in my late 50's as minor numbness on the soles and did not initially require medication. It has progressed in four years and now there is considerable foot pain and numbness, to the point where walking is difficult. Nerve conduction tests confirmed neuropathy but addition tests found no root cause so I'm considered to be idiopathic. I'm under care of a neurologist and I take 300mg gabapentin x 4 daily and 20mg amitriptyline daily but these do not provide relief. Not sure what the future holds. I joined this group hoping to learn from others with this condition.
Replies to "My neuropathy began in my late 50's as minor numbness on the soles and did not..."
Hello @bryanbay, I would like to add my welcome to Connect along with @jakedduck1 and others. Sorry to hear the medications do not provide any relief from your neuropathy pain in your feet. My small fiber PN was also diagnosed as idiopathic but there are no medications that help with numbness so I started doing my own research until I found something that has helped me. I shared my story and what helps me earlier in this discussion here - https://connect.mayoclinic.org/comment/310341/.
It's good that you are doing your own research and trying to learn more about your condition. The more you learn, the better you will be able to advocate for yourself and hopefully find something that helps. Have you thought about or tried any alternative or complementary therapies to help with the neuropathy?
@bryanbay None of the usual pn meds helped me, including Cymbalta. A few months ago I restarted Cymbalta at 90mg at bedtime, but backed down to 60mg because of the awful muscle twitching. After a few weeks, I added 30mg in the morning, and I got a note from my neurologist this morning, suggesting that I increase it to 120mg, spread over the day. Lyrica helped a lot, but reactions sent me to the hospital, so I can't take it, though it's worked for a lot of people. My siblings all say that Gabapentin treated their pn pain.
So, we can't ever assume that what helps others will help us.
One thing I did was to meet with a pain therapist a couple of years ago for 6 sessions, and a couple of things she suggested still help me (some of the time). One thing I do is to focus on the pain and analyze the various sensations. Then I focus on the sensations that aren't pain. Another thing is to focus on a part of the body that feels good, with no pain.
Have you considered a pain therapist?
Jim
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@bryanbay
Good afternoon,
You might want to ask your physician if an increase in gabapentin could provide better pain relief. The usual dose for Neuropathy is 1800mg & up although I’ve known people who took less and up to 7000mg.
I took 3600mg and it had no effect on my Neuropathy or seizures. My brother takes 3200mg and its very effective for him.
Good luck,
Jake