40 replies to this topic

[bigsmiles]

Hi , does anyone ever experience what has been described to me as a burning sensation in the bottom. My boyfriend gets this quite frequently and says its really painful and when it starts its like his bottom is on fire for hours, i wondered if anyone else has had this happen.

[bubbleandsqueak]

oh yea i get that all the time. also in my feet.

[bigsmiles]

bubbleandsqueak, on Dec 10 2006, 05:10 PM, said:

oh yea i get that all the time. also in my feet.

I don't understand why as there is no feeling down there.... yet he feels this burning

[brackman22]

That is very common. It is affectionately referred to as "burning butt". Yo simply have to ride it out. He can ask his doc about it, there may be some new med to help. But rest assured it is nothing to worry about.

Brett

[Survivor35]

I've never had a "burning butt" sensation, but I do still go through the horrible sensation that my legs and feet have "fallen asleep", but so intense that it is almost painful. Is this common, I wonder?

[dom]

i have altered sensation on my backside and feel very uncomfortable sitting down for a period,i have to lie down to ease the pressure,it feels as if i have lost my [gluteus muscles?] and i am sitting on two bones,does anyone get this sensation?

[cdngrl]

oh yes i call it the rock. mine sometimes last for days but its only in one cheek. my hands and feet burn all the time and the redder they are the more intense it is

[Captain Pike]

Yes, I get something like that. Only on the right side. It's in my right arm, and down the right side of my trunk and sometimes on the bottom of my right foot! But yeah, right in my rectum -- like the morning after a night of jalapenos! Sometimes, it also feels like a porcupine inside my body trying to claw his way out.

Another thing I get is almost like frozen fire, if that makes any sense. If I need to be cathed or I've been speaking forcefully for a while, my arms feel sort of chilled, yet burning -- weird and wonderful.

When you're feeling pain, you know you're alive. That's a quote from Big Daddy in Cat On a Hot Tin Roof.

[Captain Pike]

bigsmiles, on Dec 10 2006, 12:28 PM, said:

bubbleandsqueak, on Dec 10 2006, 05:10 PM, said:

oh yea i get that all the time. also in my feet.

I don't understand why as there is no feeling down there.... yet he feels this burning

This is a weird thing. I remember once in rehab we were having a little wheelchair race. I went to make my move on the guy ahead of me, only, I wound up running over my own foot. My left foot got entangled between the caster wheel and the frame of the power chair. It took two nurses to get my foot free. The front of my foot was bent down and pointing backwards. It swelled all up and they sent me for x-rays.

Along the way, my foot started to hurt like hell! I was psyched -- I figured I couldn't have a complete injury because I could feel my foot. Later, a neurologist told me that I felt that pain by way of the "visceral nervous system".

Apparently, there is a way that signals can get through to the brain other than traveling up the spinal cord. I guess there is an alternate connection allowing us to sense stuff like broken bones or organ trauma. This may be why some of us who may have complete injuries are still able to sense bowel and bladder fullness and/or movement.

[icarus_melt76]

Dom

That's something I've been dealing with for years. Good reminder to relieve the pressure but sucks otherwise.

Even more bizzare is when my ass cheeks get spasms. Usually when driving for a while or sitting still. Feels like when you/I used to squeeze your ass tight to prevent a fart eh. Mine usually do one cheek only per day. Gets so violent, my body gets bounced against my drivers door. Hope nobody sees it as I feel it.

The miracle body is pretty fu------- up.

[juls]

I get bad burning pain...Is it nerve pain? I tell my boyfriend it's like i'm on fire and somebody is twisting and pulling barbed wire inside my body...I get it really bad in my feet and legs sometimes in my stomache. I found swimming in a pool relieves it a little bit for me, it's good to just float around..a nice break for your bum too!!

[Joed]

No 'burning butt' syndrome here, but I have had intense burning sensations along my ribcage and in my feet. Oddly enough, a heating pad seemed to help. I guess it forces the nerves to respond to an actual stimulus, keeping them busy enough that it relieves the burning pain. (?)

[Captain Pike]

juls, on Dec 11 2006, 12:11 AM, said:

I get bad burning pain...Is it nerve pain? I tell my boyfriend it's like i'm on fire and somebody is twisting and pulling barbed wire inside my body...I get it really bad in my feet and legs sometimes in my stomache. I found swimming in a pool relieves it a little bit for me, it's good to just float around..a nice break for your bum too!!

That Is Uncanny! The barb wire thing. I've told my wife -- is just as though a piece of barb wire were healed up inside my body and someone is now trying to pull it out -- slowly.
How descriptive, and creative we are! (No vanity there!)

Oh and, regarding the pool. It's a scary thing, a C-5 quad in a swimming pool! My wife kept insisting that it would be great for me. Actually, she's working on me to get a hot tub, I just don't know how I would get out of it. Alas, she's never been wrong before, but, you never know -- there's a first time for everything. But she kept hunting around and eventually she found, at a nearby university, a pool that was warm enough (84° F.) and get this, it has an UNDERWATER RAMP! It was like floating in the clouds -- no pressure points at all anywhere! And I could kind of paddle myself around some. What a lucky guy,huh?

Edited by Captain Pike, 11 December 2006 - 07:39 PM.

[mulepower]

What i get is commonly referred to as "phantom" pain. Its in my feet like someone is hitting it with a hammer sometimes or like its being poked with needles. Its like when your foot falls asleep but much worse. I usually scream real loud,rock back and forth and hit my head on my hands til it goes away. Sometimes keeping my mind on something else works. Taking some OTC medicine helps me mentally with this sometimes.

[bubbleandsqueak]

It was explained to me like this… there is scar tissue around where your spine broke and the signals go through the scar tissue and get translated to pain.

[Chilepepper]

When my phantom pains starts up it with my feet and left leg and butt. Though for me I know the root cause of the pain, it’s because my back is out of whack. For the last four nights I've been working my 12 hour shifts. With all this sitting and not much moving around, it causes my lower back to shift or twist. So for me, to correct the burning issue, I've been seeing a chiropractor. And have been going to one for quit a few years now. Once the chiropractor adjusts my spine, the phantom pain goes away, though it might take a day to notice the burning gone. After that I'm usually good after for a couple of weeks, but if the burning returns before then, I just make an appointment with the chiropractor.

What caused me to start seeing one was years ago, I used to have bad phantom pains to my butt, to the point that I could not sit in my chair for a long period of time because it felt like someone just butted a cigarette on my ass. My dad finally talked me into seeing a chiropractor, just to see if he could help with stopping of the phantom burning. Well after weeks of spinal adjustments, I noticed that the burning feeling had subsided and for a bonus my spasms were a lot less. Because of this, I'm no longer taking anything to keep the spasms down. Who would have ever thought that by straitening the spinal cord that I would receive such benefits

When I first started going, I had to go three times a week for a period of three weeks. Then down to two times a week for a few weeks then down to once a week for a month until both him and myself were satisfied with the results. After that I started going every other week just for maintenance. That was about 18 years ago I think. To this day I still go every other week for that seems to word good for me. I tried going once a month but the spasms and burning situation comes back with a vengeance. Oh ya by the way, when he did the adjustment he would not touch the area where my spine was fused. He worked all other parts of the spine.
My paralysis is T9 incomplete.

Other than a chiropractor I would say stretch every morning or when ever it is good time of day for you. If you get in routine this will increase your circulation and limber your leg muscles.

[RYAN68]

feels like you've been sitting on some bleachers for a long time, like at a basketball/football game, I get it all the time, it hurts and sucks, about the only way i've figured how to get rid of it is to go lay down and relieve the pressure off of where its hurting

[sprog24]

hi, i get bad burning in my groin, butt and any area that i've injured through general day to day living. Its caused by root pain, same as an amputee still getting itching on a limb thats been removed. it was really bad when i was first injured but u become accustomed to after a while. I find stretching can help but u just kind gotta learn to ignore it.
cheers

[wanting.that.newz]

I hate that pain so much! i get the burning through both legs and sometimes up through my abs! its so painful! its always phantom pain for me! i was told theres nothing to worry about, and its normal!

[Batman47]

Phantom pains in my legs has been forever my best friend. You see, it sucks but it also means your nerves are getting a signal, especially helpful for standing, but you must make it your friend - no meds for it. Climb the mountain my friend.

[Avocado Baby]

I experience exactly what Captain Pike and Juls have described, usually starting in my ribs and then spreading out to the middle of my back. Apparently it's trapped nerves.

[schao]

wanting.that.newz, on Dec 12 2006, 07:25 PM, said:

I hate that pain so much! i get the burning through both legs and sometimes up through my abs! its so painful! its always phantom pain for me! i was told theres nothing to worry about, and its normal!

I thought I was the only one that have these kind of sharp burning pain it's mostly on my left leg 24/7 the pain comes and goes but I can't get use to the pain and I can't sleep,eat or do anything when the pain starts i've had this pain for 13 years I've taken all kinds of meds but nothing helps the only way I can sleep is when the meds kicks in and knocks me out to sleep. Some say it's better to have the pain rather then feel nothing at all. So what do yall think?

Edited by schao, 26 December 2006 - 08:05 AM.

[susiejt]

i had the burning suddenly start in my hands & feet a few months after injury & lasted a couple of years - intermittent but very painful & uncomfortable & they would sometimes be very red as well. Doesn't happen now i don't think (but sometimes i am good at squashing down my awareness of some things in order to make the overall picture feel more manageable / tolerable to me) but there is now a lot more numbness & loss of sensation in hands & feet, although i can use them. Perhaps the numbness is actually a bit more of a low grade burning (like preinjury if you had walked on hot pavement in summer) - i'm going to have to observe this for a bit in order to be sure now. I find since injury it can take me ages to actually even work out or descibe what some of these weird things feel like. Sometimes it is as if there is just so much weird stuff to register that the brain can't separate it or sort through it quickly at all. It all seems to take time (like most things post-injury!!)

[yolanda]

I have "burning butt" 24/7. I started taking Neurontin, a nerve pain medication, which helps a little bit. I have been to several doctors and they all have just told me to take more medicine. I don't think there is much else you can do about it.

[susiejt]

yolanda, on Jan 18 2007, 11:35 PM, said:

I have "burning butt" 24/7. I started taking Neurontin, a nerve pain medication, which helps a little bit. I have been to several doctors and they all have just told me to take more medicine. I don't think there is much else you can do about it.

Have you tried Joed's suggestion of heat pack to give the nerves something else to register i think she said ('distract the nerves' i call it as i have discovered various ways of distracting them from doing wild tingling & other weird things at times), however i have not tried doing the heat on the burning - i don't have a microwave so not a possiblility but i'd be interested to know if anyone has tried it. Other things that work on wild nerve activity for me elsewhere in my body do not work on the burning places ( still sometimes the feet & up the ankles but i have kind of got used to it or can ignore it - burning / tingling in other places is much harder to ignore eg if i've been sitting in a weird position ....I wriggle endlessly to try to keep my legs & feet & arms & bum from feeling really dead and hurting even more in that painful asleep way.

[wheeliebear75]

Wow do I ever! Yeah I have that kind of thing; from just above the crack of my tush down. If you've ever walked across concrete or sand that was hot enough to burn or blister your feet...that'd be very close. In many cases it seems to be either (4give spelling) psyatic nerve. There are tons of nerves twisted and intertwined through the vertabras of the lower spine especially. It's been bad enough for me that although I am an incomplete L2, and only have "defficet" sensory speaking...but I'd asked my DR. if he could just give me a spinalblock so I wouldn feel it anymore. Instead he recomended I try a less conventional approch. I live in USA, California. Here there was a law passed allowing the use of medical cannibis for patients who suffer from chronic pain, nausea, etc. Now this was done only after using a multitude of OTHER options 1st (also I had an additional problem of loosing too much weight, this was the DR.s main reason I was less than 1ooLBs. & wearing KID CLOTHES). The good part is that I haven't thought about actually taking my own life since I started. Yeah I've wished I just wouldn't wake up...but never enough to do something about it. The fact that it makes me not care about it hurting is worth all the tea in China.

bigsmiles, on Dec 10 2006, 02:42 PM, said:

Hi , does anyone ever experience what has been described to me as a burning sensation in the bottom. My boyfriend gets this quite frequently and says its really painful and when it starts its like his bottom is on fire for hours, i wondered if anyone else has had this happen.

[wheeliebear75]

Hey I saw your post and had wondered if anyone had told you about a "T.E.N.S unit" (Transdurmal Electrical Neurol Stimulator)? It stimulates the nerves to the point of being "tired". It takes some of the edge off. If you do use it....be sure to not allow the back to become too sweaty, as I''ve found the salty sweat acts as a conductor and puts more punch in to it than I'd like. PS neuronton doesn't always work on everyone. That may be why the Rx companies make so many different drugs.....um no on 2nd thought their in it 4 the cash.

yolanda, on Jan 18 2007, 12:35 PM, said:

I have "burning butt" 24/7. I started taking Neurontin, a nerve pain medication, which helps a little bit. I have been to several doctors and they all have just told me to take more medicine. I don't think there is much else you can do about it.

[Trail-Boss]

Not to make light of all this but,
Trail-Boss dosen't have the "Burning Butt" syndrome.
But ,I, being his side-kick day in and day out,
He sure burns my ass sometimes!!!
Love you all,
Stighk-Tight

Trail-Boss, on Jan 19 2007, 10:34 AM, said:

Not to make light of all this but,
Trail-Boss dosen't have the "Burning Butt" syndrome.
But ,I, being his side-kick day in and day out,
He sure burns my ass sometimes!!!
Love you all,
Stighk-Tight

LOOK AT THAT, I CAN'T EVEN SPELL MY OWN NAME.

"STICK-TIGHT"!!!!!!!!!!!

[RaineeDayz]

hubby gets "burning butt" alot...also known as neuropathic pain.... its signals going correctly to the "area" but comming back all jumbled which is signaling pain. Dave was fine for 4 years pain free then one day woke up in agony from it... He's been on so many meds trying to take the edge on it but not much helps... he just started Lyrica (progabalin) and it seems to help a lil.

Hope that helps a bit

~~Mel~~

[elisabeth]

I get what I believe to be neurogenic pain in my left arm quite often but not every day, it can be really irritating and quite painful but not absolutely debilitating. However, the other day (and this has only happened a handful of times since my injury) I got a different sort of awful sensation in my legs where they felt that they were burning lumps and I was screaming and crying in pain, something I never do. It was like all sorts of pain happened at once in one area, the hot feeling, the barbed wire feeling, the gone-to-sleep feeling all rolled into one.sometimes this happens at home and I just don't know what to do and I just have to ride it out, but at the moment I'm in hospital and the nurse rushed off and got an order for subcutaneous morphine because she was worried about my blood pressure, and because we have tried every other sort of painkiller, and it was the only thing which took the edge off the pain. It didn't stop the pain, but it took the edge off. Maybe it worked so well because I hate using heavy duty painkillers so when I got the heavy stuff it worked pretty well, so it was great that I could have this done immediately because I was in hospital and have access to such painkillers, but when I'm at home it is just AWFUL so if anyone has any good hints please throw them my way!

Anyway, the only hint that I have come up with myself is to get regular stretches so that the muscles don't pack up, alas I can't really afford that many regular stretches because my care package is not that big and physiotherapy is expensive, but some of my carers do stretches occasionally and you wouldn't believe this but I haven't been getting any since I've been in hospital! So maybe that's why I got the pains the other day, I'm not sure...

Ultimately, the more that stories are shared the closer we get to ideas and solutions :-)