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Burning stomach/trunk...

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Unread 05-27-2009, 09:53 AM   #1
Hope15
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Default Burning stomach/trunk...

I have come across a few people on the forum who suffer from a burning back like I do. In fact, though I have PN in my feet, legs, arms and hands like almost everyone else, it's my trunk that is especially bad.

Yesterday, like almost every other day, my back was on fire. I have a lot of burning in my neck and lower back and if someone didn't know any better they would say that my bad back and neck are causing my PN. Though my MRI's indicated degeneration and disc bulges, they claim it isn't causing my PN. Here is the kicker, my brother has some of the same pains I do, and his doctors said it is definitely his back. He recently got an epidural for his back and now feels better.

The other burning that drives me crazy is across my stomach. I haven't really read about that on the forum, but I am sure there are some sufferers out there. Right across my stomach it feels like it's on fire.

So does anyone else suffer from a lot of burning across their trunk? Both stomach and back? I told my sister that it feels like I went out and got the worse sun burn in the world, and then someone came along with a piece of steel wool and scrubbed me down!
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Unread 05-28-2009, 05:27 AM   #2
glenntaj
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--from my worst symptoms in those areas, one of the most confusing things about my acute-onset burning neuropathy (at least to neurologists) was the burning I had in my abdomen, shoulders, lower back--and there was no indication of spinal problems on MRI. I still get "flares" of these symptoms now and again.

Too many doctors, even neuros, don't realize that there is truncal neuropathy, especially when the small fibers are involved.
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Unread 05-28-2009, 11:33 AM   #3
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Originally Posted by glenntaj View Post
--from my worst symptoms in those areas, one of the most confusing things about my acute-onset burning neuropathy (at least to neurologists) was the burning I had in my abdomen, shoulders, lower back--and there was no indication of spinal problems on MRI. I still get "flares" of these symptoms now and again.

Too many doctors, even neuros, don't realize that there is truncal neuropathy, especially when the small fibers are involved.

Thanks glenn. My neuropathy came on body wide in a relatively short time as well, six weeks. I have also wondered about sfn, but still need a test to confirm it. I hope and pray that someday I might get better to the point to where I have flares now and then maybe, but otherwise not much pain. When I mentioned my burning back and stomach to the couple of neuros I saw, they didn't say much come to think of it. Just curious glenn in your case, when did you notice that you seemed to be getting better? I love hearing about any improvement on the forum.
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Unread 05-29-2009, 08:27 AM   #4
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--came on very fast--over the course of hours to days, and continued to worsen for about three-four months, whereupon it plateaued for some months (fortunately, I was getting decent pain relief from Neurontin by then, and had gotten a skin biopsy to confirm damage to the small fiber axons, which was the only test result that indicated anything), and then slowly--very slowly--began to recede.

This is consistent with the (admittedly skimpy) research on acute onset neuropathies of unknown etiology; molecular mimicry autoimmune processes are suspected, though hard to prove, and there tends to be "slow, partial recovery" over months to years. Susbsequent skin biopsies I've had have shown some re-enervation, though I'll probably never get back to my original baseline nerve density. Presumably, the autoimmune attack petered out when there was nothing else to destroy.

It is certainly possible for neuropathies to improve--if there's a direct toxic, nutritional, or metabolic cause to the neuropathy and that is eliminated or controlled, re-enervation can occur. This process tends to be EXTREMELY slow, though--nerves regenerate more slowly than just about any other bodily tissue--and while it's happening, one can get all sorts of weird sensations and pain as nerves reconnect in new patterns and the brain tries to make sense of the new signals. In fact, during the process, which is often described as "flaring", it's hard to know if one is getting better or worse except in long-term retrospect.

Last edited by glenntaj; 05-30-2009 at 06:58 AM.
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Unread 05-29-2009, 11:39 AM   #5
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Originally Posted by glenntaj View Post
--came on very fast--over the course of hours to days, and continued to worsen for about three-four months, whereupon it plateaued for some months (fortunately, I was getting decent pain relief from Neurontin by then, and had gotten a skin biopsy to confirm damage to the small fiber axons, which was the only test result that indicated anything), and then slowly--very slowly--began to recede.

This is consistent with the (admittedly skimpy) research on acute onset neuropathies of unknown etiology; molecular mimicry autoimmune processes are suspected, though hard to prove, and there tends to be "slow, partial recovery" over months to years. Susbsequent skin biopsies I've had have shown some re-enervation, though I'll probably never get back to my original baseline nerve density. Presumably, the autoimmune attack petered out when there was nothing else to destroy.

It is certainly possible for neuropathies to improve--if there's a direct toxic, nutritional, or metabolic cause to the neuropathy and that is eliminated or controlled, re-enervation can occur. This proces tends to be EXTREMELY slow, though--nerves regenerate more slowly than just about any other bodily tissue--and while it's happening, one can get all sorts of weird sensations and pain as nerves reconnect in new patterns and the brain tried to make sense of the new signals. In fact, during the process, which is often described as "flaring", it's hard to know if one is getting better or worse except in long-term retrospect.

Thank you glenn. Fascinating. I swear, you explain things better then any doctor I have gone too!
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Unread 05-29-2009, 03:40 PM   #6
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My trunk is more affected with burning than anywhere else....but it comes and goes. I have 2 discs smashed, T8 and T9 and I had spinal nerve root injections and wish I had not. But every one is different.


Quote:
Originally Posted by Hope15 View Post
I have come across a few people on the forum who suffer from a burning back like I do. In fact, though I have PN in my feet, legs, arms and hands like almost everyone else, it's my trunk that is especially bad.

Yesterday, like almost every other day, my back was on fire. I have a lot of burning in my neck and lower back and if someone didn't know any better they would say that my bad back and neck are causing my PN. Though my MRI's indicated degeneration and disc bulges, they claim it isn't causing my PN. Here is the kicker, my brother has some of the same pains I do, and his doctors said it is definitely his back. He recently got an epidural for his back and now feels better.

The other burning that drives me crazy is across my stomach. I haven't really read about that on the forum, but I am sure there are some sufferers out there. Right across my stomach it feels like it's on fire.

So does anyone else suffer from a lot of burning across their trunk? Both stomach and back? I told my sister that it feels like I went out and got the worse sun burn in the world, and then someone came along with a piece of steel wool and scrubbed me down!
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Unread 05-30-2009, 12:17 PM   #7
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Originally Posted by cyclelops View Post
My trunk is more affected with burning than anywhere else....but it comes and goes. I have 2 discs smashed, T8 and T9 and I had spinal nerve root injections and wish I had not. But every one is different.
Hi cyclelops. Having a burning trunk is really awful. It hurts so much to lean back into the couch or a chair, or lay in bed on your back. You can't really flip over on your stomach because that is burning too, so I try and lay on my side a lot. I'm sorry to hear about your back, and I fully understand. Having horrible disc pain in addition to a burning trunk is miserable. And when your trunk is on fire as well as your legs, feet, arms and hands, well, there are no words....
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Unread 01-18-2013, 04:14 PM   #8
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I can't believe that I have finally read that someone else experiences this horror. I too have burning in my arms,legs, neck , back and stomach.
Lyrica helped for a month or so, then stopped. I can't tolerate higher doses so I combine 100 mg with 25mg iR oxycodone. Which now my doctor has decided I should be taken off of. Why?? Because doctors look out for their own best interest before a patients I understand.
A heating pad sometimes helps.which seems odd considering the nature of the pain being burning.
It is often too much to bear , and I fear that I will never feel like my old self again.
I sympathize. Don't hesitate to contact me.
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Unread 01-18-2013, 05:50 PM   #9
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Before I started all my supplements I use to get burning and tingling "spots" on my stomach. The first time it ever happened was at night while sleeping I woke up and thought a spider bit me, a spot on my stomach kept tingling and burning. I got up to look at it and nothing there but it happened all night long.

Then it happened a few times during the day, especially in my waist area where my waist band hit my stomach. It was very sensitive.

But then I got on my thyroid meds, changed diet and supplements and it is gone now. Except in my dreaded feet.

Oh and my mom has a spot that burns and tingles on her back, dr kept saying shingles but I say its a pn spot, like her toes.

Last edited by Stacy2012; 01-18-2013 at 05:51 PM. Reason: forgot...
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Unread 01-18-2013, 06:28 PM   #10
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I have trunk problems also. It hurts to wear pants. I wear dresses with no defined waist. It hurts to sit. I stand in back of theater to watch movies. My legs feel like bugs are crawling on them and I feel a need to move around. I am on gabapentin, Tramadol, and Lidoderm patch.
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