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Neuropathic pain for a year and a half; NORMAL EMG/NCV

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ChristopherMR
New Member
Joined : Mar 2017
Posts : 9
Posted 8/16/2017 4:40 PM (GMT -7)
Does this mean I must have small fiber neuropathy?

A year and a half ago I was diagnosed with a carpal tunnel injury (with evidence from an NCV that my right was much faster than my left hand), and that got me started in this craziness. The tingling in my hands was and is incessant, and after a year (last November) it moved to my neck and head. Lately my legs have been occasionally tingling as well, but the EMG/NCV that we ran there also came back normal. I've had burning hot needles (paresthesia) for many months at a time, as many of you are familiar with, as well as a laundry list of other symps (brain fog, Joint Pain, stiff neck, cracks & grinds, fatigue, dizziness, eye floaters, sound & light sensitivity), some of which have subsided. I have since been diagnosed with lyme, started treatment in May, and am weening off of my doxy at 100mg a day, while maintaining my herbal anti microbial and detox supplements.

I still struggle daily with being limited in the amount of activities (mainly guitar playing and recording, my "work") without my hands going numb.

There are many days where I still cannot wash my hands without them falling entirely asleep. Drinking cold liquids also hurts, which would make sense to me because the nerve fibers in your teeth are incredibly small. I am incredibly grateful for the overall decrease in intensity of pain over the past several months! I am baffled by how my tests can look normal when I am so symptomatic during treatment. confused

After a few google searches, I came upon this great article. smile

http://www.hopkinsmedicine.org/news/media/releases/small_nerve_fibers_defy_neuropathy_conventions

Small Fiber Neuropathy could explain many of these symptoms. However, because it affects the small fibers in the peripheral nervous system (i.e. those in the skin), it is difficult to detect on an EMG/NCV, which tests the longer nerves with a larger diameter.

It seemed to explain my hypersensitivity to temperature and texture, and more importantly, how an EMG could come back "normal." I thought it could help some of you out! yeah yeah I am wondering if any of you have also tested for it/confirmed your diagnosis of SFN? Is the test painful/does it have long term effects? I have read that you lose feeling in the small biopsy location for years until the neurons regrow. shakehead skull

Any and all information is greatly appreciated! Best of luck on all of your healing journeys!

turn turn
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Girlie
Forum Moderator
Joined : May 2014
Posts : 44374
Posted 8/16/2017 5:05 PM (GMT -7)
i have read that the only way to test for SFN is the punch biopsy.

The EMG and NCS won't work.

I had both done (EMG AND NCS)

The EMG hurt (sticking little needles in several places on my arm/hand) and I wasn't told what the test involved.
The NCS hurt - but not as bad.

Dr. said nothing showed...

The EMG measures electrical activity of the muscles.
The NCS measures how well, how fast the nerves are sending the signals.
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ChristopherMR
New Member
Joined : Mar 2017
Posts : 9
Posted 8/16/2017 5:26 PM (GMT -7)
Yikes! Thanks for the information. EMG definitely hurt enough, haha
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jrpsf
Veteran Member
Joined : Aug 2014
Posts : 1762
Posted 8/16/2017 5:55 PM (GMT -7)
Christopher-I have permenant nerve damage in my left side from cervical spine damage pre Lyme.

This is an area I'm very familiar with. Have you tried taking large doses of Omega 3 twice daily? Keeping inflammation down has been key for keeping nerve pain minimal. I was told by a top hospital I would always need to be on a narcotic for pain. Lyme made the pain SO much worse yet my LLND was able to get me off pain meds about two years ago. I take 6 capsules of Nordic Naturals Ultimate Omega twice a day. I also take 1 Zyflemend by New Chapter twice a day. I still get flairs and deal with those but so much better.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 44374
Posted 8/16/2017 6:36 PM (GMT -7)

jrpsf said...
Christopher-I have permenant nerve damage in my left side from cervical spine damage pre Lyme.

This is an area I'm very familiar with. Have you tried taking large doses of Omega 3 twice daily? Keeping inflammation down has been key for keeping nerve pain minimal. I was told by a top hospital I would always need to be on a narcotic for pain. Lyme made the pain SO much worse yet my LLND was able to get me off pain meds about two years ago. I take 6 capsules of Nordic Naturals Ultimate Omega twice a day. I also take 1 Zyflemend by New Chapter twice a day. I still get flairs and deal with those but so much better.

Jrpsf - you've talked about TOS before - did that have something to do with the cervical spine damage? Or is it completely separate?

I tried Omegas but it didn't help my nerve pain. I probably should have taken a higher dose.
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jrpsf
Veteran Member
Joined : Aug 2014
Posts : 1762
Posted 8/16/2017 7:24 PM (GMT -7)
Girlie-the TOS likely speed up the shoulder tears. The orthopedic surgeon said that ligaments etc were shredded. The spinal damage turned out to be due to being born with the lowest form of spina bifida. 5% of the population are. My neck took the wear and tear from compensating for weakness in my lower back. When I hit my 40's the nerves at c-5-7 were taking a beating. When the nerve spasms would get to my head they had the same effect as a migraine and I already had hormonal migraines. It took years until my Internist ordered an MRI. The MRI was to rule out my neck.

The Omega 3 I take is 1280 mg per capsule. If you are still dealing with nerve pain it's worth trying a high dose. What I take is expensive but they just came out with a X2 capsule and a mini capsule that are lower priced. I've also seen a pretty high quality option at costco online from time to time.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 44374
Posted 8/16/2017 8:13 PM (GMT -7)
oh - you've had a few things going on in your life - and now lyme...how unfair!!!

So, you'd recommend the Nordic Naturals for the omegas?
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jrpsf
Veteran Member
Joined : Aug 2014
Posts : 1762
Posted 8/16/2017 8:37 PM (GMT -7)

Girlie said...
oh - you've had a few things going on in your life - and now lyme...how unfair!!!

So, you'd recommend the Nordic Naturals for the omegas?

I would. My LLND does and I know of at least a dozen or so more dr's that do. If it's cost prohibitive just look for one that has similar properties.
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madisongrrl
Regular Member
Joined : Oct 2016
Posts : 230
Posted 8/16/2017 8:46 PM (GMT -7)

ChristopherMR said...
Does this mean I must have small fiber neuropathy?

It seemed to explain my hypersensitivity to temperature and texture, and more importantly, how an EMG could come back "normal." I thought it could help some of you out! yeah yeah I am wondering if any of you have also tested for it/confirmed your diagnosis of SFN? Is the test painful/does it have long term effects? I have read that you lose feeling in the small biopsy location for years until the neurons regrow. shakehead skull

Any and all information is greatly appreciated! Best of luck on all of your healing journeys!

turn turn

An EMG/NCS measures large fibers.

A punch biopsy measures small fibers.

The symptoms you are describing are more in line with small fiber neuropathy.
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ChristopherMR
New Member
Joined : Mar 2017
Posts : 9
Posted 8/18/2017 6:11 AM (GMT -7)
Jrpsf I am sorry to hear of your extensive nerve damage. cry Unfair indeed... So much going on! I am very glad you were able to finally get off your pain meds. Congratulations! yeah yeah I also have had some TOS-like symptoms in my left shoulder (playing guitar contributes heavily to compressing those nerves as that is where the strap rests). I'll get nerve pain shots from shoulder into my face and arm and have my vision be affected, my LLMD said it was probably a mild form of TOS. Nasty condition, I can only imagine your struggle.

I am real glad to hear Omega-3's have helped a lot! I haven't tried taking them yet, but I have been getting an OK source of them in my diet via fish. I should try regularly taking them regularly and see if I notice a difference! Thanks very much for the advice, I'll have to check out Nordic Naturals! turn

Thanks for the info madisongrrl, that was my feeling once I read a lil bit about SFN.
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