14 replies to this topic

[juli]

My husband is a c4c5 quad. He talks about having a burning feeling covering his whole back. It is so bad it wakes him up at night in terrible pain. Is this a good thing or a bad thing? Will it get better? He also has shocking feelings all up and down his legs. Please let me know if you know anything about this. Always worried

[Edinburgh Colin]

Sounds like neuropathic pain. In other words it's pain generated by his nerves rather than the actual pain originating in the area where he describes it. If this is actually the case then he needs to be treated with a specific kind of pain medication which targets the nerves rather than the usual general pain medications.

Is he a complete or incomplete injury? By this I mean does he have any sensation or movement below his level of injury?

Is this pain a new thing? how long has he had it and how long has he been injured?

All of these pieces of information will enable us to possibly provide more specific advice or guidance.

EC

[Snakeye]

The burning and shock feelings are normal for sci. He'll either get used to it or take all kinds of drugs that are worthless for a year or two...then he will have to get used to it..I assure you, over time it will become old hat...

[wheeliebear75]

Edinburgh Colin, on 08 September 2011 - 02:01 PM, said:

Sounds like neuropathic pain. In other words it's pain generated by his nerves rather than the actual pain originating in the area where he describes it. If this is actually the case then he needs to be treated with a specific kind of pain medication which targets the nerves rather than the usual general pain medications.

Is he a complete or incomplete injury? By this I mean does he have any sensation or movement below his level of injury?

Is this pain a new thing? how long has he had it and how long has he been injured?

All of these pieces of information will enable us to possibly provide more specific advice or guidance.

EC

These blanks being filled in will help us.....a LOT. Short answer though is "it's normal" however JACKED UP that may be. I have this problem with my lower 1/2 being that I'm L2.

[Steven K]

Burning hurts. I had numb spots on me, then they caught fire for a few months. Now they burn still but have feeling to the touch so that's my experience

[pinkcloud]

hi juli

Burning..ouch sounds like nerve pain..also stabbing, shooting, ice cold, stinging..are in the club ...good news is theres medications out there that can ease things a little.

We describe these pains like this because in our imagination this is what we think being stabbed would feel like. I have been stabbed by a knife ever so slightly and i'd say no, it feels nothing like stabbing in real life at all..more like that sharp jab of an injection we get from doctors.

Bunring feels more like carpet burn type pain rather than being actually burnt.

I hope this helps a little to let you know that as bad as it is...its not as bad as our imaginations that get all carried away thinking up such descriptions.

It is horrid and real hard to deal with, i swear now if i wasnt on nerve meds i would have had a heart attack by stress of the pain...

however after a while...its just part of normal life and we ignore it more..like we have to with horrid loud neighbours noise.
.

Edited by pinkcloud, 08 September 2011 - 10:17 PM.

[Cybermex]

juli, on 08 September 2011 - 01:49 PM, said:

My husband is a c4c5 quad. He talks about having a burning feeling covering his whole back. It is so bad it wakes him up at night in terrible pain. Is this a good thing or a bad thing? Will it get better? He also has shocking feelings all up and down his legs. Please let me know if you know anything about this. Always worried

(Phantom Pains) The burning and shock feelings are normal this is what they call “Phantom Pains” he will be treated with all kind of narcotics anywhere from morphine to Vicodin: (Vicodin is used to relieve moderate to severe pain.) Any group of drugs called narcotic pain relievers will do more harm than good and are totally worthless:
read Edinburgh Colin it sounds like he know what he’s talking about; I’m not sure if he suffers from this pain but he is right.
I had this pain for 15 years and you’re right it is 24/7 and it travels from your lower back all the way down the back of your legs to the bottom of your feet (starts right below my injury T4 complete) and none of these narcotic pain relievers did anything for me. I think what helped me more is meditation the technique about the Pineal Gland, there’s plenty of websites online that teaches you how to do this. And also “EFT” Look this one out on youtube. Try both you’ll find that we need this for everyday life whether you suffer from pain or not.

[juli]

Edinburgh Colin, on 08 September 2011 - 02:01 PM, said:

Sounds like neuropathic pain. In other words it's pain generated by his nerves rather than the actual pain originating in the area where he describes it. If this is actually the case then he needs to be treated with a specific kind of pain medication which targets the nerves rather than the usual general pain medications.

Is he a complete or incomplete injury? By this I mean does he have any sensation or movement below his level of injury?

Is this pain a new thing? how long has he had it and how long has he been injured?

All of these pieces of information will enable us to possibly provide more specific advice or guidance.

EC

He is incomplete and has had these feelings for months but they are getting worse. He and I are still pretty new to all this, his injury happened 15 months ago. He wakes up at night in pain and when I roll him over his back actually feels really hot to me. Maybe it feels hot to me because I know thats what he is feeling, I dont know. The shocking feelings in his legs are all new. I was hoping that ment something was coming back. When do we know when he is having some kind of real improvement? Are all feelings like that phantom?

[Edinburgh Colin]

If he's at the 15 month point then he's just coming into a zone where this stuff seems to happen. My problems changed the most about 18 months post. I had burning like a blowtorch all down my left thigh, was prescribed Gabapentin and went up to 1,800mg/day to deaden the pain. However importantly for you I have weaned myself off Gabapentin over the last 2 weeks and the burning is gone. Nerve activity has continued to change and that problem is now gone.
There is an upside or light further down the tunnel for you guys so keep hoping and be strong.
As other have said, you do get used to a lot of this and it just becomes a background sort of noise.
Try to help him take his mind off it.
Good Luck,
Colin.

[juli]

Edinburgh Colin, on 09 September 2011 - 07:28 AM, said:

If he's at the 15 month point then he's just coming into a zone where this stuff seems to happen. My problems changed the most about 18 months post. I had burning like a blowtorch all down my left thigh, was prescribed Gabapentin and went up to 1,800mg/day to deaden the pain. However importantly for you I have weaned myself off Gabapentin over the last 2 weeks and the burning is gone. Nerve activity has continued to change and that problem is now gone.
There is an upside or light further down the tunnel for you guys so keep hoping and be strong.
As other have said, you do get used to a lot of this and it just becomes a background sort of noise.
Try to help him take his mind off it.
Good Luck,
Colin.

Thank you so much for taking the time to respond, I am his care giver and wife for 28 years and I am always afraid of what happens next. The body is definately a work of art, a masterpiece in engineering and design, the way things work together is amazing, its just that I could have went my whole life not knowing any of this and would have been fine with it. It is sad and nice to know that we are not alone though, thank you. I just pray.

[Painted Daisy]

Hi Juli,

What a great caregiver you are! My husband is like you in that he is the one who try's to figure out what is going on with me and often he sees something and is better equipped to tell the Doctor what I'm experiencing than I am.

Anyway, in the beginning I thought the skin on the back of my hips had to have had a rash or something on it and I kept asking my husband to check it for me. I even got a mirror and checked myself! I had the shocking jolts from my hips down my legs whenever someone would touch me on the shoulders from behind or a loud sound would also set it off.

Oh and then of course the physical therapy also got my nerves really in an uproar, which is a good thing I guess. It's kinda like the nerves are trying to communicate but get all jumbled and agitated.

Once I got in touch with what was happening and worked with my Doctor to prescribe meds specific to neuropathy I was relieved, some. I am on max amount of gabapentin with lyrica in between. I have also found that the pain gets worse when I am anxious, so I always have Clonasepam to take in those instances.

I cant imagine living without the meds, I would go crazy, because the (pain) is so bad. I like Pinkclouds analogy...it's so true!

Hang in there, there's help for neuropathy(nerve pain)just tell his doctor what he's experiencing.

[wedgwood]

Its 3.1/2 years since my injury and looking back I am amazed at the burning I put up with and the multiple spasms especially at night. But in the last few months the burning and spasms have almost gone away. I now have a better handle on bladder infections and constipation both of which must have been contributing to the burning and spasms. With the constipation it was almost as bad when I took stuff to help, the burning in my bowel was just as bad as when I was constipated. I tried meds for the burning and spasms but they did not agree with me, I felt like out of my mind with them, so I chose to take paracetamol or ibuprofen when I needed it most but it wasn't a full dose every day and it helped just enough to take the edge off.

My spinal injury doctor said some people are better not taking the meds but not many, so you need to see if meds will help you! I did have to take clonazapam when I was learning to self catheterize because the hyper sensitivity of my body made it impossible for me to learn without spasms but I got off it after 6 months when I was confident.

Immediately, after my injury a doctor told me 'this is a long arduous journey you are embarking on', at the time I didn't have a clue what he was talking about but I do now. Time for a spinal injury patient has very little connection with the real world, everything takes a painfully long time but eventually I can offer that the burning and pain should improve to a point where it is bearable. In a way I think from the perspective of the burning pain, being incomplete with some sensation does us no favours for the first couple of years.

[Edinburgh Colin]

wedgwood, on 13 September 2011 - 10:01 AM, said:

Its 3.1/2 years since my injury and looking back I am amazed at the burning I put up with and the multiple spasms especially at night. But in the last few months the burning and spasms have almost gone away. I now have a better handle on bladder infections and constipation both of which must have been contributing to the burning and spasms. With the constipation it was almost as bad when I took stuff to help, the burning in my bowel was just as bad as when I was constipated. I tried meds for the burning and spasms but they did not agree with me, I felt like out of my mind with them, so I chose to take paracetamol or ibuprofen when I needed it most but it wasn't a full dose every day and it helped just enough to take the edge off.

My spinal injury doctor said some people are better not taking the meds but not many, so you need to see if meds will help you! I did have to take clonazapam when I was learning to self catheterize because the hyper sensitivity of my body made it impossible for me to learn without spasms but I got off it after 6 months when I was confident.

Immediately, after my injury a doctor told me 'this is a long arduous journey you are embarking on', at the time I didn't have a clue what he was talking about but I do now. Time for a spinal injury patient has very little connection with the real world, everything takes a painfully long time but eventually I can offer that the burning and pain should improve to a point where it is bearable. In a way I think from the perspective of the burning pain, being incomplete with some sensation does us no favours for the first couple of years.

Ditto on the incomplete bit. I am hoping over time it will help to maintain condition, help to notice/avoid to minimize damage or injuries I do to myself as well. Just a shame we need to go through all the real pain as well as the neuropathic stuff though. What to do? the grass can always be greener but on the other hand it could be a desert!


It's my lot and I'll live with it, hopefully with a laugh and a good word for others too.

EC

[dreamerr]

I have been the course of the drugs like vics, percs, and fentynol and none have worked. I got off everything and now smoke mmj. I know someone on this board said why smoke just eat. It isn't the same and has way different effects. It all depends on what you need. Smoking takes away spasms almost immediately for me as well as the burning and reduces the pain because it enables my body to relax. I don't really know anything about being a para but have been trying to live with it for almost 5 years without success.

I also went the root of antidepressants which made me way more suicidal and smoking helps that as well. I now only take Valium to help the muscles relax after a particularly hard day or when I go for my massages which hurt greatly but make me feel good in a few days. I will say they tried to give me an anti-seizure med which I know works for a lot of people but made me more suicidal as well. It begins with a N. If you want to know what it is I will look for you.

[Ferreira]

I have it all the time. Gets worse if i remember it for any reason (such as now). One time i was on the automatic pedalling bike (can´t remember the name)and i was trying to move so hard i couldnt stand the pain. I had to stop and go outside.
At the early days of injury i had hiper-sensibility on the level of injury, couldnt touch it. Now that is gone.