Nerv pain: why do some get it and some don't?

[Regine]

:thinking: This is a question I have and maybe Dr. Young has an idea. It seems that some SCI people get nerv pain and some don't. My PT says she treated about 20 patients with SCI and I am the very first one with this nerv pain. Is there an explanation for that? I thought, maybe if we know why it happens we might get an idea how to reduce it.

[David Berg]

It usually boils down to who has incomplete damage to sensory nerves. There's also the possibility of neuropathy with complete damage, as you can find in cases of phantom pain.

[alan]

Luck of the draw. The really unlucky people get pain along with paralysis. :(

[sjean423]

I'm complete ... and have nerve pain. So it isn;t just incomplete injuries.

[cara_m]

That's a very good question. I would also like to know why for years someone with an sci never has nerve pain and then decades later has it for no apparent reason. Mine isn't totally unbearable but it is quite uncomfortable. ftr: it's in my lower legs and feet and I'm also incomplete.

[Rbrauer]

I'm complete as well and deal with pain.
The one thing I do know is over the past 30 years it has shifted slightly.
No longer hurts in the hips, but now lower down at the top of my thighs and side of them.

Varies with mile-age.

[alhavel]

Never had it, Now I do, at least something is working, But I kinda liked it without. Go figure.

[Regine]

This is all very interesting. Particularly that the nerv pain can start much later than the SCI. Mine is just gradually increasing ever since my accident, which is very scary. It seems that complete as well as incomplete injuries can cause the pain. Maybe we don't know the answer to that question yet.

[Dale]

Mine started 3 1/2 months after injury and still trying to get some relief. Meds didn't work. It's like sitting on a hot plate huh! Read a thread about HLPA, going to try.

Still trying to get my feet wet on the CC forum, love it here.

[wheeliecoach]

I have a progressive disease of the spinal cord, and I did not used to have neuro pain...but within the last couple of months, I have developed it in my feet. The burning is just awful! I thought it was due to the fact that I was going through a progression...but now I am just not sure. I just want it to go away and be like it was before.

[alan]

I felt nothing for a month after the injury. I want that back. I could have made a life like that - pains never allowed it.

[David Berg]

When I did a survey on my website several years ago, it was common for complete quads to report that they had no normal touch sensation below the level of injury, only neuropathic pain. It's a common complaint that they can't make people understand how they can't feel anything, but they hurt. It's also common that whatever causes the central pain, SCI, stroke, etc, the neuro pain often starts months later. There's also a risk of central sensitization if severe but possibly treatable pain endures for several months.

[Uncle Peter]

I guess I'm lucky because my only nerve pain is in the toes on my right foot, and one likely cause is treatable, an ingrown toenail.
Never took medication for it.

[alan]

For years after my 6/81 injury, doctors told me I couldn't have pain, and refused to try to deal with it.

[dgrotz]

I had no pain for first 5 years of my injury, now it just keeps getting worse, I'm told it's a syranx (sp?) a fluid filled sack on my spinal cord, not big enough to drain though, just take meds that don't really help the problem but I guess It's better than nothing.

[SCI-Nurse]

The literature supports that at least 60% of people with SCI have significant neuropathic pain, and another 20% have pain but not severe enough to interfere with their daily lives. Anyone who has extensive experience with patients with SCI knows this. If someone tells you people with SCI (or MS) don't have pain, they are either lying or don't know anything about SCI.

Some studies indicate that neuropathic pain is more common in those injured when older than in those injured when younger. One study I just read had a 2X increase in in neuropathic pain in those injured after the age of 40 compared to those injured prior to the age of 25.

We also know that most people with SCI who have neuropathic pain report it is worse when they are fatigued or depressed, and that it unfortunately tends to get worse with aging. Weather (atmospheric pressure) can also make a difference. A syrinx can also cause new or worsened pain (dgrotz, get another opinion about your need for syrinx surgery).

Dr. Young claims there is less neuropathic pain in those who got methylprednisiolone on the day of their traumatic injury, but that has not been my experience, and I haven't seen this documented in the literature.

Certain types of injuries, for example, gun shot wounds or cauda equina injuries, have a very high rate of severe neuropathic pain vs. other mechanisms or levels of injury.

(KLD)

[jccarolina]

My friend is a T12 complete (Shot in back in '06) and he has horrible pain in he's legs.
I've never seen someone twist into a pretzel from the pain like he does.
I have it pretty bad sometimes too with this new T10 injury.
We are going to a new SCI Doc. tomarrow.

[allen54]

My nerve pain stated in Oct.07 and started in feb.08 with nerontin1800 mg per day.My problem is when the pain gets bad I start in with the vicoden. I would love if they could burn the nerves away.Certain days I could just SCREAM! The Dr gave me one drug that got the pain to go away but I kept forgetting so many things it was crazy

[2ndtwin]

has anyone suggested radio frequency nerve ablation?

[Skye83]

I started having pain 3-4 months after having a spinal cord tumor resected in Dec 1997. It's all been downhill from there. None of my doctors believe that I'm worsening, including pain management. Since none of her other central pain patients have worsened, she said I am simply "perceiving" that the pain is worse. But she will treat me anyway. Grrrrr-can't stand the condescension. I can't have MRI-I have a permanent electrode glued to my brainstem. (1999-desperate for help, I allowed myself to be a guinea pig in an effort to cover bilateral waist to toes central pain with very high placement for spinal cord stimulation-what a fool I was!) I am 75% sure that if I could have an MRI rather than the current myelogram w/CT, that syrinx, tethered cord or something would show why I'm so severe I can't even sit in a wheelchair! I can walk, but I'm in too much pain to do much else than lie flat in bed. It is the pulling and crushing sensation that is so disabling, esp when getting up from a sitting position. I don't even have spasticity for God's sake. I look so "normal" the doctors don't have a clue how much agony I'm in. If I were to actually verbalize it (and I have), I get referrals to shrinks. It's the invalidation from the medical community and my own friends and family, that is the most crushing blow of all since my tumor surgery. I feel profoundly alone.

[David Berg]

Skye... long time, no see. Sorry to hear things are still going so rough for you. Have you made any posts on Mary's pain group lately, or did I miss them? I still remember your story about the turtle in your yard. I sincerely hope you can find something that will provide some measure of relief.

[Regine]

Skye, I can relate to that feeling of invalidation and not being taken serious. People say "but you don't look like you are in pain". Maybe the problem is, that you don't see pain like a bleeding wound or a broken leg, and there is no immediate danger like with cancer or a heart attack.
KLD, thank you so much for your interesting response. I have been "chewing" on that information of nerve pain being somewhat age related and am wondering, if you could make that article you were reading available to all of us. Are they explaining why that is so?

[Richnotrich]

I am a T7/8 since 11/09/'93. My burning pain started, oddly enough about 6 months after I got out of rehab. I found out that smoking (and other tobacco products) makes it worse...almost unbearable. So I have quit smoking, but the pain is still there. I take 3 meds/day (gabapentin, doxepin and clonazepam), which reduce it, but it never goes away completely.

It starts in my feet and works it's way up the back of my legs, and buttocks. Sometimes it even gets clear up to my injury level, which feels like a tight band w/needles in it around my rib cage. Almost takes my breath away.

Now, you can believe this or not, but a couple of hits on a joint (or a pipe) relieves it much better than those pills I've been taking for 14 yrs.
But the stupid State of PA no longer allows medicinal pot, not even for miopia patients! And although it is illegal, I still do it, but it is quickly becoming unaffordable.

I am not condoning it for anyone reading this, just telling my own personal experience. I know many people are against it, but mostly because of ignorance. Comparing alcohol to pot, is like apples to oranges. Alcohol is a known depressant, yet is legal. Pot, on the other hand makes most people happy, and sometimes laughable almost beyond control. You decide.

rk

[barondidit]

kld, could you explain why neuro pain can be worse for gunshot injuries. i am a t-10 complete, but have horrid nerve pain. from my injury site to my toes. 24/7. I often thought it was soooo bad because i got shot and there was a lot of damage. i even have a strange numbness/sensiitivity<weird! all the way up to the entry wound on that side only. The entry wound is just under my arm pit. its strange.
Anyway...got any good ideas for pain management?. Im up to 4 30mg a day of oxycodone ir. It helps but my bodys tolerance to it just keeps going up and up. I am running out of medication before fill time. I AM DEPENDANT on opiates now which kinda sucks. I have tried a lot of pain releif meds...most didnt work. even the neuro blockers :(. morphine makes me feel horrible. the pain patches just knock me out and KEEP me there. I finally have a dr. who would prescribe oxy. It is the only thing that has worked. Sucks that i seem to be becoming immune to it. I see he is getting ansty every time i tell him i need more. He says i need some sort of long acting med. Guess ill talk to him bout it soon. My life now revolves around my pain.....and management there of.
That silly 1 - 10 scale ammuses me. I dont think many people / drs dont know what TRUE PAIN is. I too like the m.j. for pain and quality of life issues. Sucks i kept getting booted from p.ms because of it. REDICULOUS!
sorry..rambling....why more pain with gun shot wounds?
thanks
Baron

[alan]

Why do the pains keep getting worse? And my injury was caused by diving into an Unidentified Floating Object.

If you're developing tolerance to oxy, your doc likely needs to raise the dose.

[timdog65]

i've had this nuero pain six months after injury i'm complete with some feeling go figure now i was comfortable now it has picked up from a 3 now to a 10 on the pain scale now i feeling terrible now my dr doesn't have a clue how my pain jus picked up out the blue can i get some help?????

[smokymtn memories]

I had some neuro pain before I had surgery, almost two years ago, but it started to get worse about a month or two after the surgery. I was told it was a good sign nerves were healing.

Enough healing already. I've been on Darvecet, Gabapentin, and Methocarbamol now fior two years. This week the doctior upped the dosage on the Gabapentin from 900mg a day to 1800mg a day. They had me try Lyrica, it worked pretty good, but it's not affordable.

The higher dosage is helping, but so far I've found nothing to get rid of the pain and burning.

My sympathy to all who suffer from this nasty pain...........

[Wise Young]

kld, could you explain why neuro pain can be worse for gunshot injuries. i am a t-10 complete, but have horrid nerve pain. from my injury site to my toes. 24/7. I often thought it was soooo bad because i got shot and there was a lot of damage. i even have a strange numbness/sensiitivity<weird! all the way up to the entry wound on that side only. The entry wound is just under my arm pit. its strange.
Anyway...got any good ideas for pain management?. Im up to 4 30mg a day of oxycodone ir. It helps but my bodys tolerance to it just keeps going up and up. I am running out of medication before fill time. I AM DEPENDANT on opiates now which kinda sucks. I have tried a lot of pain releif meds...most didnt work. even the neuro blockers :(. morphine makes me feel horrible. the pain patches just knock me out and KEEP me there. I finally have a dr. who would prescribe oxy. It is the only thing that has worked. Sucks that i seem to be becoming immune to it. I see he is getting ansty every time i tell him i need more. He says i need some sort of long acting med. Guess ill talk to him bout it soon. My life now revolves around my pain.....and management there of.
That silly 1 - 10 scale ammuses me. I dont think many people / drs dont know what TRUE PAIN is. I too like the m.j. for pain and quality of life issues. Sucks i kept getting booted from p.ms because of it. REDICULOUS!
sorry..rambling....why more pain with gun shot wounds?
thanks
Baron

Baron,

Let me give some background first.

It was only since the mid-1990’s that doctors even accepted that such pains are real, instead of “phantom” or “imaginary” pain. However, doctors and of course people with injuries have known about this pain for most of history. Because nobody had an explanation for it, doctors dismissed it as being imaginary.

The pain is real and it comes from neurons in your spinal cord or brain. It occurs when people lost sensory input. So, if you cut a peripheral nerve (or cut off a leg), the loss of sensory input result in the appearance of neuropathic pain, usually in the area where sensation was lost. It happens with diabetic neuropathy, where there is degeneration of sensory fibers. It occurs after damage to the brain, such as after a stroke.

When you damage the sensory fibers (axons) to the spinal cord, the axons become disconnected from the neurons and surrounding axons that have not been injured sprout additional branches and fill in the vacated spots on the neurons. In the process, the neuron becomes hyperexcitable (overexcitable) and fire burst of action potentials (the signals that neurons use to communicate with each other. These bursts are regarded by the brain as pain.

Most of the drugs that are being used to treat neuropathic pain were initially developed as anti-epileptic drugs that reduce spontaneous activity of neurons. So, the pain is a result of abnormal activities of the neurons that are relaying signals to the brain. Studies of denervated neurons suggest that they do become hyperexcitable.

Gunshot wound induced spinal cord injury does have a higher incidence of neuropathic pain than other causes of spinal cord injury. One possibility is that gunshot wounds has a propensity to damage some fibers and leave others intact, resulting in a higher likelihood of sprouting axons that can contribute to pain. Another possibility is that the bullet is more inflammatory and inflammation is known to make neurons hyperexcitable.

In animal studies, we have found that given rats high-dose methylprednisolone reduces the development of neuropathic pain behavior. Methylprednisolone is well known to suppress sprouting of axons. However, because the National Acute Spinal Cord Injury Study (NASCIS) trial did not include patients with gunshot wounds (because surgeons were pessimistic that these cases will respond to any therapy), we could not recommend methylprednisolone to people with gunshot wounds.

A majority of people with gunshot wounds don't get methylprednisolone and I wonder sometimes whether this is because they are not getting methylprednisolone. For that reason, I have started another topic that asks who has neuropathic pain and received or did not receive methylpednisolone. I presume that you did not.

Regardless of the cause, the treatment is similar at the present. The first line of therapy is amytryptiline (Elavil). Then gabapentin (neurontin). If gabapentin doesn’t work, most doctors try Lyrica. Cannabinoids have been reported by many to be beneficial. Finally, if all else fails, opioids may work but very high doses are needed and fentanyl patches are popular.

There is likely to be future therapies that manipulate the excitability of neurons genetically, changing expression of ionic channels.

Wise.
•

[metronycguy]

what do they mean when they say that neuropathic pain is plastic or the brains perception of the pain signals is plastic?
anyone else have the quagmire i have.
i sleep poorly due to the pain, despite the meds for sleep.
around mid day i get this tiredness and i really need a nap, the problem is if i lay down or fall asleep seated the pain will always skyrocket, this will increase my need for bt meds.
drives me nuts, very rarely can i nap without waking up to a full blown pain episode that take a while to qwell.
the higher the pain is, the worse i sleep and the more i need the nap , and the bt pain from laying down will be higher .
a crazy circle.

[Oilman]

The pain for me it's always greatest in the morning or after a nap. Sometimes I wake up and the first conscious thing I notice is the ceiling and next thing is the shooting pains that come from both my legs. My toes burned so badly I have to look down to see if they are actually on fire. It's a 45 mg of methadone during the day that I really don't think is doing anything and 20 mg of dilaudid four to five times daily for breakthrough pain. I still take 1800 mg of Neurontin and 80 mg of baclofen. It's no wonder my sleep pattern is so screwed up. What a vicious cycle.

[tarheelandy]

Dr. Young,

I have tried to find some pictures of MRI's made of neuropathy online. I thought it would be interesting to see if the images show neuropathic pain as well as "real" pain. In other words, does the brian acknowledge it as pain. Also, if the brain is acknowledging pain, does that mean that certain nerve signals are getting through the spinal cord to the brain?

Thanks

Andy

[vjls]

pain why would a spinxz <sp> make the pain worse i really want scream
right now my feet are on fire my lung feels like they are burning they have me on 150 mg 2 times a day and its really not working. i am c6c7 incomplete

but i can feel when you touch me be low injury granted not with a q tip
but just regular feel

and really dumd ? what exactly is a spinx > and how bad are they? how do you know you have 1


how does a tens unit help?

[KimB]

I have neuropathic pain after having a spinal stroke.
Tried numerous different meds in rehab. nothing worked including
gabapentin (neurontin) or Lyrica. I did try a toke on a joint once, but it was old grass and I am not really into it anyway it did nothing. I find it wipes me out for a weekend and I dont have time to live like that.
I was offered morphine patches by the pain management team at the hospital, again I dont want to live like that.
So I take nothing because nothing works.
I asked the pain management team if I could try acupuncture or other therapies, they looked blank! Its meds or nothing! I havent found an acupuncturist yet who is game to treat me.

I find that swimming in a warm pool helps. Cold water is a bit tough, it doesnt help.
I was also taught a breathing technique by the psych in hospital which helps me to breath through it when I am trying to go to sleep or concentrate on something else.

There was a book that she recommended that helps people cope with chronic pain and it has some good advice I thought. If anyone wants the name of it PM me and I'll dig it out.

[WonderDerek]

While I was in the hospital, I had HORRIBLE neuropathic pain, but I haven't had any neuro pain in the longest time. I was on about 1500mg of Neurontin while in the hospital, and after about 5 months of being home my neuro pain took a huge decline. I would get the occasional HORRIBLE neuro pain, but now I never get neuro pain. I am a complete para at T10, and my surgeon said that my spinal cord was the worst that he's ever seen. Like someone said, I guess luck of the draw.

[metronycguy]

pain drives me nuts keeps ME up and cant sleep as soon as i lay down or try and nap,pain wakes me up.
i thought this fentora was working, but noy that well, change to methdone too.