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Old 03-26-2019, 04:13 PM #1
changejobs changejobs is offline
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Default small fiber neuropathy

i've had massive pain a few times since 1990. Ive been lucky to go 9 years straight without any problems but last year started to get strange feelings in arm and leg, got worse, saw a dr that I saw 10 years earlier. They tested back then and i had a positive for small fiber neuropathy and was sent on my way.

she did a mri of neck , emg, told me to do pt and sent me on my way again. well its 4 months later and my body feels like hell. lots of burning, some pins needles and other stuff going on throughout body.

does anyone else here have SFN and go through the same hell. what do you take for it?
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Old 03-30-2019, 09:25 PM #2
pippi longstocking pippi longstocking is offline
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Default small fibre hell!

Quote:
Originally Posted by changejobs View Post
i've had massive pain a few times since 1990. Ive been lucky to go 9 years straight without any problems but last year started to get strange feelings in arm and leg, got worse, saw a dr that I saw 10 years earlier. They tested back then and i had a positive for small fiber neuropathy and was sent on my way.

she did a mri of neck , emg, told me to do pt and sent me on my way again. well its 4 months later and my body feels like hell. lots of burning, some pins needles and other stuff going on throughout body.

does anyone else here have SFN and go through the same hell. what do you take for it?
I have had Small Fibre for probably twenty years with absolutely no relief. Been given a boatload of drugs that never did help with pain relief but lots of side effects. Problem is it is in my feet and I had to become gainfully employed twelve years ago which meant pounding my already sore feet on cement for the entire day. Used to work 43 hours weekly and now down to 8 and it is totally unbearable. Would love to touch base with anyone else out there with foot problems. Txs.
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Old 04-01-2019, 11:06 AM #3
LMPinkereton LMPinkereton is offline
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Quote:
Originally Posted by changejobs View Post
i've had massive pain a few times since 1990. Ive been lucky to go 9 years straight without any problems but last year started to get strange feelings in arm and leg, got worse, saw a dr that I saw 10 years earlier. They tested back then and i had a positive for small fiber neuropathy and was sent on my way.

she did a mri of neck , emg, told me to do pt and sent me on my way again. well its 4 months later and my body feels like hell. lots of burning, some pins needles and other stuff going on throughout body.

does anyone else here have SFN and go through the same hell. what do you take for it?
I've had SFN for over 20 years. I've tried every recommended drug and supplement. Everything I've tried has been a very temporary fix and the side effects make it impossible to continue using them for more than a short period of time.
I just can't believe there is nothing that can provide relief from the never-ending pain.
For me, it has become unbearable to continue. It seems to be hopeless.
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"Thanks for this!" says:
echoes long ago (04-01-2019)
Old 04-10-2019, 09:31 PM #4
IPN1967 IPN1967 is offline
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Default Hope

This may provide some hope as a future cure or at least provide some relief

Pirenzepine
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Old 04-12-2019, 07:55 PM #5
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Hi! I'm an old member whose been out of touch for quite awhile.

I've had idiopathic small fiber neuropathy for over 5 years. I have chronic burning that keeps me up at night. After exhausting all methods I had back surgery for a compressed nerve sac 3 years ago. It did make my back stronger and some of my burning lighter. However the burning is still chronic.

The doctors put me on gabapentin and opioids for my nerve pain. For me the gabapentin did nothing for the pain but helped with Restless Leg Syndrome, which often accompanies neuropathy. The opioids helped tremendously with the pain, but I didn't want to be on them for the rest of my life. So I tried Kratom and that is what I use now. There is a lot of controversy and imo bad information out there about this plant but it works for me.

Over the counter Aspercreme with Lidocaine, Magnesium Lotion, Fibro Cream all help me. Cbn helps me sleep (it's not the same as Cbd although Cbd has helped many. If you do a search in this section you'll find lots of info. They're finally doing a lot more research on medical marijuana and there are a few things that I tried that helped, but only if you can stay home

Life isn't as easy as it once was and it usually requires some planning; but most of the time it's ok and some of the time it's better then ok.
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Old 04-22-2019, 02:57 PM #6
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I'm coming up on 5 years since my onset of SFN. Mine came on suddenly, then got quite a bit better and just a low level pain for over 4 years now. Unfortunately, it does seem like my feet are starting to get a bit worse recently. I'm using Gabapentin, which I know works for some people but not at all for others. I started at 1800 mg/day but then tapered down to just 600 mg /day. Thats a very low dose, but just enough to take the edge off for me.

I also take a bunch of supplements that seem to have helped as well ( see the supplements thread)

I can probably retire in about 3 years. Just hoping things don't get too much worse before then.
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