Spinal Cord Injury and Paralysis Forum / Health Matters / New Paralysis / I'm new. Do any of you experience a 'burning' sensation? / Latest Posts

RE: I'm new. Do any of you experience a 'burning' sensation?

JoeMonte — Wed, 03 Nov 2010 09:33:54 GMT

Unfortunately, many complete injuries have nerve pain. I have severe nerve pain below my level of injury. I am a T-10 complete and have nerve pain in my groin area. It amazes me how I have pain when there are no lower motor neurons working. I have tried many drugs but nothing really works. I have met many who have nerve pain. If you can, try to work through it and not take to many drugs. Your body will just get used to them and you will need something stronger. Your bowel can create nerve problems too. Make sure you try to go on a regular basis. Also have your surgeon check your back out if you have a lot of metal in you. I have met people who had screws pinching nerves too. I wish you well.

RE: I'm new. Do any of you experience a 'burning' sensation?

CHILL — Thu, 30 Sep 2010 13:44:02 GMT

Hello, I have a C-3,4 & T-3,4 (incomplete) break, for the last ten years I have had the same problems and acupuncture, massage, stretching, tens-units and positive thinking is the only way to get through this and that there is Life after SCI. From a Quad to a Para, I wont stop till I/we beat this and walk again. Good luck

RE: I'm new. Do any of you experience a 'burning' sensation?

JoeMonte — Tue, 31 Aug 2010 13:48:26 GMT

LJ,I am a complete injury with a severed cord at the T-10 level. I still experience burning pain in the groin area and occasionally on my butt. You would think no pain exists with a complete injury but it does. I have had it for over three years now.

RE: I'm new. Do any of you experience a 'burning' sensation?

LJ — Mon, 30 Aug 2010 18:58:56 GMT

When you say 60%, is that only with incomplete injuries, or both? In other words, if the spinal cord is completely severed, do those SCI patients also suffer the pain?Lj

RE: I'm new. Do any of you experience a 'burning' sensation?

JoeMonte — Tue, 24 Aug 2010 20:45:57 GMT

I am three years into my injury. I am a T-10 complete. I have severe burning in my groin area and left side. I have good days and bad. I try to keep busy and not think about the pain. I only take a hydrocodone to take the edge off. I tried Neurotin and Lyrica but the body gets to used to these drugs. They also make you very foggy and your reaction time becomes slow. I work out and just try not to think about pain and focus on positive thoughts. I hope this helps. Good luck and God Bless.

RE: I'm new. Do any of you experience a 'burning' sensation?

sjean423 — Tue, 17 Feb 2009 12:36:14 GMT

If he can type, and use a computer, he should look into a career path that can be follwed that way.

As far as him reaching out here. Give him the links, and then let it be. Who knows, some day he may decide to look.

RE: I'm new. Do any of you experience a 'burning' sensation?

sankofa02 — Fri, 13 Feb 2009 08:24:25 GMT

Dan Gottlieb:

Wonderful advice from the moderator, but I would just add one more thing. Your friend might be better off if he reached out to us and we could speak with him directly through this forum. It's not that we don't want to hear from you also. Anybody who cares for anybody with a spinal cord injury is greatly impacted by the trauma, so please stay connected. But I would like to hear from you about you and what all this means to you and I would like to hear from your friend about what he would like.
Think that's possible?

No I don't. This isn't his kind of 'thing'. No disrespect meant by any means. He's young. He's too into his myspace, etc. He's not my friend.. he's family. I live with him. If you do have any ideas however...on how he should get started in life...feel free to pass thoughts this way. He was just signing up to goto college before he got hurt, so his career path is not chosen. He kinda has the attitude, well what can I do.. His use of hands are limited. He can type though obviously lol.. even to open a water bottle he needs assistance, (or just uses his mouth. hehe )

RE: I'm new. Do any of you experience a 'burning' sensation?

Dan Gottlieb — Mon, 09 Feb 2009 12:44:47 GMT

Wonderful advice from the moderator, but I would just add one more thing. Your friend might be better off if he reached out to us and we could speak with him directly through this forum. It's not that we don't want to hear from you also. Anybody who cares for anybody with a spinal cord injury is greatly impacted by the trauma, so please stay connected. But I would like to hear from you about you and what all this means to you and I would like to hear from your friend about what he would like.

Think that's possible?

RE: I'm new. Do any of you experience a 'burning' sensation?

sankofa02 — Sun, 08 Feb 2009 08:41:04 GMT

thanks for the reply.

i've never heard of tens..so i guess i will go ahead and google that after i write this. has you tried acupuncture? he is not working out anymore. he stopped in sept. he was attending an outpatient rehab place 3x a week for 2hrs each day. ran out of money. he's not in school either. he just moved back home a couple months ago so i think he's trying to figure out what he wants to do. i think he's discouraged because i think he feels like..'well what am i gonna goto school for, because what can i really do' you know what i mean?

i agree with you when you say keeping busy & distractions also help. sitting there in bed all day definately doesn't help him.

he was 19 when he got hurt and no insurance so he's on medI cal. he got kicked off childrens services when he turned 21 last year.

RE: I'm new. Do any of you experience a 'burning' sensation?

FuschiaFan — Sat, 07 Feb 2009 18:28:35 GMT

He can work out on his own. Join a gym, or borrow a friend's free-weights. Swim at the local plunge or YMCA, push miles at the local high school track or around the mall. There are tons of things he can do that don't require formal therapy to maintain his strength, cardiovascular conditioning, and help reduce his pain.

He can register for classes at the local community college, ideally after opening a case at the local DOR office for vocational rehab. People with cervical spinal cord injuries do need an education if they are going to work, but I personally know people with injuries at this level who are school teachers, professors, psychologists, social workers, lawyers, judges, accountants, web masters, website designers, stock brokers, and small business owners, as well as other professions.

He could do volunteer work until he can go to work.

Everyone needs a reason to get out of bed in the morning. Going to work, school or working out will help give him some of this structure, but he needs to actually do it. Laying around in bed or hanging around the house watching TV will only pull him deeper into th cycle of depression and pain.

Here is some good information on TENS:

http://emedicine.medscape.com/article/325107-overview

http://www.healthline.com/natstandardcontent/alt-electroanalgesia

http://www.spineuniverse.com/displayarticle.php/article1694.html

RE: I'm new. Do any of you experience a 'burning' sensation?

FuschiaFan — Sat, 07 Feb 2009 11:18:20 GMT

Many if not most physiatrists take Medicaid (Medi-Cal in CA) insurance. Where are you located? You can look for physiatrist at the website posted above and call their offices to see if they take Medi-Cal patients. Of course he needs to apply for Medi-Cal first, and he should be making these calls if he is 21 (and an adult).

While Neurontin is often given in doses up to 4500 mg. daily, it is VERY unusual to take 1000 mg. at a time. It should be spread out over the day, so if he is taking 2000 mg. daily it should be taken in approximately 500 mg. 4X daily.

He should also be evaluated to see if TENS or other non-medication pain therapies can help.

Is he exercising and working out? This creates endorphins that help with pain. Is he starting back to school? Keeping busy and distraction are recommended methods of helping to deal with chronic pain like this.

RE: I'm new. Do any of you experience a 'burning' sensation?

sankofa02 — Thu, 05 Feb 2009 21:37:57 GMT

ok...sorry......

i completely forgot about the term 'physiatrist '

he is on med Ical for insurance... so i dont know how easy it would be to find a doctor in this field. he was only 18 and going back to college and just got terminated from his dads health insurance and literally had the the new health insurance papers on his desk when his accident occured.

he does currently take neurotin. he takes it 2x a day...from what i understand 1000 mg each time. the dr tried to 'up' it to 3x a day..and he complained he couldn't stay awake...

help :(

RE: I'm new. Do any of you experience a 'burning' sensation?

FuschiaFan — Wed, 04 Feb 2009 06:16:54 GMT

You can find physiatrists (physicians specializing in rehabilitation) in your Yellow Pages listed under "Physical Medicine & Rehabilitation" (PM&R) or check this list of board certified physiatrists for your state. The spinal cord medicine board certification is additional, and you would need to ask the physiatrist if they also have this.

http://www.e-aapmr.org/imis/imisonline/findphys/find.cfm

RE: I'm new. Do any of you experience a 'burning' sensation?

Trish-411 — Wed, 04 Feb 2009 04:21:07 GMT

Not a psychiatrist (aka shrink) but a physiatrist (pronounced feez-i-a-trist). A physiatrist is a doctor that specialized in rehabilitation medicine. Within this population of physiatrists, there are ones that have a specialty in SCI. We live in Indianapolis and there are many physiatrists but only a couple have the certified sub-specialty in SCI.

My husband is a C3-C4, and he has plenty of neuropathic pain. It can really be a problem. Your family member is not alone in his issue. My husband currently takes Neurontin. He has tried Lyrica and it helped but the side effects outweighed any benefits so he had to get off the Lyrica. I would recommend that your family member talk to his doctor about Neurontin and see if he can find a dose that helps combat his neuropathic pain. I say start with Neurontin because I have seen and read that many people have trouble with Lyrica and also many say that the withdrawl trying to get off of it is horrible.

RE: I'm new. Do any of you experience a 'burning' sensation?

sankofa02 — Mon, 02 Feb 2009 21:37:53 GMT

where can i find a 'shrink' that specializes in sci?

RE: I'm new. Do any of you experience a 'burning' sensation?

FuschiaFan — Mon, 02 Feb 2009 17:35:09 GMT

Over 60% of those who have sustained a spinal cord injury suffer from severe neuropathic pain, which many consider more disabling than the SCI. It is often described as "burning", "shooting", "electric" or "crushing". It can be at the level of sensation where the injury occurred (radicular pain) or below the level of injury; including areas where the person does not have normal sensation.

While narcotic such as oxycodone are often used, the first line medications are those that are used for other neuropathic pain. This includes Neurontin (gabapentin) in doses up to 4500 mg. daily (started slowly and titrated gradually) and the newer medication Lyrica. Also helpful for many are the tri-cyclic antidepressants like Elavil.

Non-medication techniques worth trying include self-hypnosis, TENS, and relaxation training and biofeedback. Fatigue and depression make this worse, and pain may make them worse, so often interventions to assure sufficient rest, moderate exercise (to increase endorphins) and treatment of depression are also indicated at the same time.

He should see a physician who specializes in SCI, ideally a physiatrist who is also board certified in spinal cord medicine. If you cannot find one, let us know and we may be able to help. Most pain clinics should also be expert in managing neuropathic pain.

I'm new. Do any of you experience a 'burning' sensation?

sankofa02 — Sun, 01 Feb 2009 09:31:39 GMT

Someone in my family has a c5 incomplete injury. He often complains of his sides & back 'burning'. He went to a doctor and basically dr. just wanted to give him rx for oxycotin. He doesn't like taking pain pills...especially ones that are... .'that intense/crazy'

I'm guessing it's because of the nerves? Do any of you experience this or what do you do for the pain? He's 21, and had his accident over 2 years ago. Thanks.