Inspired Spinal Cord Injury Support Forum

Lαrα
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What is Neuropathic Pain? Mar 13, 2014 0:15:03 GMT -8

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Post by Lαrα on Mar 13, 2014 0:15:03 GMT -8

With this thread the aim is to explain what Neuropathic pain is, why we get it with Spinal Cord Injury and what we can do to ease the effects of it.

Many of us with a Spinal Cord Injury will experience some kind of nerve pain (neuropathic pain). Each individual is different in regularity and the extent to how much they will experience.

Some will experience one or possibly all of the types of nerve pain and for some the level of pain is almost unbearable and others tolerate it. For me the worst is the my burning feet, especially at night.

Nerve pain is often felt as burning, stabbing, pins and needles....i also experience a feeling of rushing 'ants' under the skin and my skin is hypersensitive to touch in places.
All this can occur in places with altered sensation...it does sound a little crazy!

Why does nerve pain occur?
Healthy nerves will only send a signal when stimulated, e.g., a nerve in the hand that senses temperature will stay quiet until the hand gets near the flame on the stove.
However, an injured nerve is like a broken telephone that rings when no one is calling (burning) and is unable to get a dial tone when you need to make a call (numbness).
Even when it has nothing of importance to say to the brain, the nerves will send a message and a confused message at that. The “confused” message can be interpreted by the brain as pain or strange sensations like “pins and needles.”

Over time, the spinal cord can become accustomed to getting bombarded by a nerve that never seems to turn off and makes adjustments to account for it. So, even once the nerve manages to stop firing, the spinal cord has become so used to sending that signal that it will take over and keep doing it on its own.

The best way to find out what is going on re, your nerves is to have some tests carried out.

These are called EMG studies. An EMG study will be able to see the extent of nerve damage by the registered responses that are recorded. The test will reveal how much of the signal is being carried to a muscle or not.

If you wish to read the technical information of these EMG tests, then please click on the the Inspired forum post. Inspired Info on EMG Nerve Tests

source

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cbdives Advanced Member Posts: 735 Post Likes Received: 490 Date Joined: November 2013 Injury: Peripheral Neuropathy Date Injured: Progressive Member is: Offline Send PM	What is Neuropathic Pain? Mar 13, 2014 13:32:34 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by cbdives on Mar 13, 2014 13:32:34 GMT -8 Interesting article...I have peripheral neuropathy so I am quite familiar with this. I take Gabapentrin and tolerate it very well. Joe
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What is Neuropathic Pain? Mar 13, 2014 15:04:17 GMT -8

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Post by Lαrα on Mar 13, 2014 15:04:17 GMT -8

Many of us will wonder at some point if the nerve pain will go away and hope that the nerves are 'waking up' and fixing but sadly nerve pain seldom improves and the nerves dont normally wake up this way.

The chances of improvement depend on the extent of the injury to the nerve.
If the injury is mild and the cells that support the nerve are left intact – the neuropathy should improve as the nerve heals.

Many times the nerve is injured by a something that can be treated or reversed, i.e. a compressed or pinched nerve, chemotherapy or exposure to a toxic chemical. In these cases, whatever is the culprit can simply be removed from the equation and allow the nerve to heal.

However, if the injuring agent is still present, it is harder for the nerve to heal. In fact, if the nerve stays injured for too long, the damage can be irreversible. The most important thing to keep in mind is the sooner a neuropathy is treated, the better the chances to have a good recovery.

Reading this extract explains to me, that for us with Spinal Cord Injury, when it talks of treating the neoropathy, im presuming that this is relieving the compression on the spinal cord.

Many individuals will be put on the appropriate pain meds and as cbdives comments..it can be tolerable. Unfortunately for many, this is not the case and the pain can be debilitating.
Some medications work well and some seem ineffective.

The above link to the forum information on nerve pain and treatment is very useful but i will add to this thread more about treatments available.

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What is Neuropathic Pain? Apr 22, 2015 1:49:58 GMT -8

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Post by Lαrα on Apr 22, 2015 1:49:58 GMT -8

Im reviving this original post not just for the information but also for members to hopefully share their thoughts and experiences on what works or gives them relief from their nerve pain.

For me, i know that my feet will go crazy with nerve pain soon because the summer is on its way and my feet burn so much more dependent on the external temperature.

I have tried everything, i hate wearing socks and shoes because of it but i do put cooling creams or gel on to give some temporary relief. But to be honest, I do avoid medication because i dont want the side effects from it.

Please share what gives you any relief

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What is Neuropathic Pain? Apr 22, 2015 23:29:36 GMT -8

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Post by wavewolf on Apr 22, 2015 23:29:36 GMT -8

Lαrα, great topic, affects most of us to some degree, I would think. I use R-alpha lipoic acid (300mg twice daily) and get some relief, about the same as with Gabapentin but without side effect of brain fog. Non-pharma pain management is also important for me, including distraction (mainly music), cold laser treatments, trigger point pressure (Theracane), myofascial release massage, and movement in general. My nerve pain is less when my legs are warm. Raising legs above heart level for about 20 minutes during the day helps "reset my pain meter".

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Hoea ra!

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What is Neuropathic Pain? Apr 23, 2015 0:11:20 GMT -8

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Post by Lαrα on Apr 23, 2015 0:11:20 GMT -8

Apr 22, 2015 23:29:36 GMT -8 wavewolf said:

Lαrα, great topic, affects most of us to some degree, I would think. I use R-alpha lipoic acid (300mg twice daily) and get some relief, about the same as with Gabapentin but without side effect of brain fog. Non-pharma pain management is also important for me, including distraction (mainly music), cold laser treatments, trigger point pressure (Theracane), myofascial release massage, and movement in general. My nerve pain is less when my legs are warm. Raising legs above heart level for about 20 minutes during the day helps "reset my pain meter".

Thanks wavewolf, The music is definitely a respite! I really need to try the R-alpha lipoic, it sounds an ideal option, without the brain fog...Oh thats interesting that your nerve pain is less when your legs are warm...I seem to be the opposite.

Raising the legs is excellent advice, mine are raised for part of the day no matter what, especially after having several DVTS.

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What is Neuropathic Pain? Apr 23, 2015 14:02:25 GMT -8

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Post by wavewolf on Apr 23, 2015 14:02:25 GMT -8

Lαrα, do you also wear compression hose? I find that helps my leg pain greatly. I think this is pretty standard when you have DVTs. Good value and huge variety of styles at www.ameswalker.com/. I like the AW Style 16 because they give good compression around midfoot as well as graduated compression on calf, they wear like iron, and they breathe; I also wear socks to absorb foot sweat. They ship internationally, but it is a bit dicey.

Hoea ra!

DJ Administrator STAFF Posts: 8,162 Post Likes Received: 2,829 Date Joined: July 2013 Injury: C6 - ASIA B Date Injured: June 2011 Member is: Offline Send PM	What is Neuropathic Pain? Apr 23, 2015 17:51:21 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by DJ on Apr 23, 2015 17:51:21 GMT -8 Burning toes are my only noticeable nerve pain but it really sucks on the days I have it!
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Butiki Advanced Member Posts: 2,270 Post Likes Received: 1,154 Date Joined: July 2013 Injury: L 3 ASIA B CES Date Injured: 16/11/2012 Member is: Offline Send PM	What is Neuropathic Pain? Apr 23, 2015 19:50:31 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Butiki on Apr 23, 2015 19:50:31 GMT -8 Very good article, I can relate to all of it.
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Lαrα Global Moderator STAFF Posts: 7,350 Post Likes Received: 3,100 Date Joined: August 2013 Injury: CES Date Injured: March 2011 Member is: Offline Send PM	What is Neuropathic Pain? Apr 24, 2015 2:57:32 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Lαrα on Apr 24, 2015 2:57:32 GMT -8 DJ, Butiki, what gives you relief, anything? Or do you just tolerate it?

Butiki Advanced Member Posts: 2,270 Post Likes Received: 1,154 Date Joined: July 2013 Injury: L 3 ASIA B CES Date Injured: 16/11/2012 Member is: Offline Send PM	What is Neuropathic Pain? Apr 24, 2015 3:08:06 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Butiki on Apr 24, 2015 3:08:06 GMT -8 Lyrica and panadol Osteo seem to do the trick for me Lαrα, also changing my cushion weekly.
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What is Neuropathic Pain? Apr 24, 2015 5:25:09 GMT -8

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Post by jeff1967 on Apr 24, 2015 5:25:09 GMT -8

Great article!! For many years my neuropathy was contained to my feet. Very weird but every other day my feet felt ice cold and the "needle" sensation is nearly unbearable. Within the past 6 months things have progressively gotten worse. The burning sensation from my ankles up to mid thigh. I also have days where I can barely touch my thighs because it feels as if they are bruised very badly.

I tried Gabapentin which did not help at all. I do take Cymbalta for depression which seemed to work good against the neuro pain for a while. I am also on Hydrocodone which does make it tolerable some days but others I am not sure anything would help. I told my wife yesterday that if I had a hatchet I would probably cut my feet off they were so bad.

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Lαrα Global Moderator STAFF Posts: 7,350 Post Likes Received: 3,100 Date Joined: August 2013 Injury: CES Date Injured: March 2011 Member is: Offline Send PM	What is Neuropathic Pain? Apr 24, 2015 5:35:08 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Lαrα on Apr 24, 2015 5:35:08 GMT -8 jeff1967, peripheral neuropathy can spread all the way up to the injury site, do you think this may be a factor in the change?
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What is Neuropathic Pain? Apr 24, 2015 5:50:40 GMT -8

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Post by jeff1967 on Apr 24, 2015 5:50:40 GMT -8

Lara,

Yes I am afraid it is. I moved down to Florida 6 years ago and finding a doctor that is even somewhat familiar with SCI and what we deal with has been a struggle at best. I am in the "giving up looking" stage at this point. The new "Affordable Healthcare" has screwed our system up more than it was already screwed up.

I still work full time and it has really been hard on me the past few months. I will keep pushing on until it gets to the point that I can't. Then I have no idea what I will do LOL

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Lαrα Global Moderator STAFF Posts: 7,350 Post Likes Received: 3,100 Date Joined: August 2013 Injury: CES Date Injured: March 2011 Member is: Offline Send PM	What is Neuropathic Pain? Apr 24, 2015 7:02:40 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Lαrα on Apr 24, 2015 7:02:40 GMT -8 jeff1967,well you know the saying, as one door closed another opens! Its surprising how resourceful we can be when we need to!
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What is Neuropathic Pain?

Post by Lαrα on Mar 13, 2014 0:15:03 GMT -8

Post by cbdives on Mar 13, 2014 13:32:34 GMT -8

Post by Lαrα on Mar 13, 2014 15:04:17 GMT -8

Post by Lαrα on Apr 22, 2015 1:49:58 GMT -8

Post by wavewolf on Apr 22, 2015 23:29:36 GMT -8

Post by Lαrα on Apr 23, 2015 0:11:20 GMT -8

Post by wavewolf on Apr 23, 2015 14:02:25 GMT -8

Post by DJ on Apr 23, 2015 17:51:21 GMT -8

Post by Butiki on Apr 23, 2015 19:50:31 GMT -8

Post by Lαrα on Apr 24, 2015 2:57:32 GMT -8

Post by Butiki on Apr 24, 2015 3:08:06 GMT -8

Post by jeff1967 on Apr 24, 2015 5:25:09 GMT -8

Post by Lαrα on Apr 24, 2015 5:35:08 GMT -8

Post by jeff1967 on Apr 24, 2015 5:50:40 GMT -8

Post by Lαrα on Apr 24, 2015 7:02:40 GMT -8

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