burning pain

[chiquita1972]

I don't really use this forum very often so bare with me... but I am in so much pain
I am a T4.5 &6 SCI for 20 years. I am having continuous pain in my ankles and feet ....burning and tingling ....I have seen my doctor and he thought that it was a liver problem ....i guess sitting all the time I gained a little weight...oops...my liver was not happy.....anywho I have lost 30 pounds and all my liver function tests are now normal...but guess what??.....yup that's right the pain is still there.:thinking:
My Dr suggested valium but as a mom I am not willing to take anything that affects my judgement.....having a teenage daughter does that all on her own....What can I do and is there anyone out there that suffers from this. I just about cry if you so as much graze my foot with a feather...nighttime is the worst as the sheets seem to aggravate it.
Please help me i am so frustrated and i don't even know exactly what this pain is from. Any info anyone has would be a help
.....i can't stand it for much longer......ahhhhh:(

[bbs]

I take Fentanayl 50 mg for my pain... it's burning and severe, my left hip just about does me in.. I understand, and I'm sorry for your pain. I don't know if this med will help you, but what all have you tried?

Take care and hoping you are feeling better!

bbs

[fishin'guy]

Ive had years, like 14 yrs of the burning, was on neutontin for a number of yrs, then Dr (Rheumatologist) started Lyrica- it has done wonders for me, it went away in three days. However alot of people in here didn't like it ESP> the withdrawls if you need to go off of it. So listen to all, get informed, this is the place, let me tell you I've learned a ton in just weeks in here.

[bbs]

I've tried both neurotin and lyrica for my pain.. they worked for a very very short time,then stopped... I didn't have any problems with withdrawals. As a matter of fact, even on Fentanayl, my stupid mail order pharmacy screwed up the order and I had to go a couple of weeks with out my Fentanayl. I tried to explain to them that one is NOT suppose to just stop it like that... they didn't care. I find that very little people on this earth really DO care. But anyways, that's just me, I do care and I am extremely empathetic and understanding.

I hope something works for your pain, I know how difficult it is to just function with pain, then add all this other stuff on top of it, ie. the AD, nausea and try to work and take care of kids, it just gets to be too much, I know.

GOOD LUCK!
bbs

[6 Shooter]

I don't really use this forum very often so bare with me... but I am in so much pain
I am a T4.5 &6 SCI for 20 years. I am having continuous pain in my ankles and feet ....burning and tingling ....I have seen my doctor and he thought that it was a liver problem ....i guess sitting all the time I gained a little weight...oops...my liver was not happy.....anywho I have lost 30 pounds and all my liver function tests are now normal...but guess what??.....yup that's right the pain is still there.:thinking:
My Dr suggested valium but as a mom I am not willing to take anything that affects my judgement.....having a teenage daughter does that all on her own....What can I do and is there anyone out there that suffers from this. I just about cry if you so as much graze my foot with a feather...nighttime is the worst as the sheets seem to aggravate it.
Please help me i am so frustrated and i don't even know exactly what this pain is from. Any info anyone has would be a help
.....i can't stand it for much longer......ahhhhh:(

A magnetic mattress pad will do wonders to aleviate your pain. And no meds in the process. Go to www.magneticosleep.com (http://www.magneticosleep.com) My son sleeps on a 20 gauss mattress pad which works wonders for aleviation of body pain. He is on NO pain meds and has not needed any since about 5 months post injury!! He is a C-6. And no, I do not sell these pads. To get an education about magnetic therapy, listen to the 50 minute lecture at www.amri-intl.com/moreinformation.html.

[captainbadass]

I have Transverse Myelitis and have Hypersensitivity from my breast to my feet it affected my left side more than the right and yes the doctors never listen they don't care just want your insurance dollars so they see you for 30 seconds and right another prescription and send you on your way! I take Lyrica 300mg twice a day for the pain and flomax because it affected my bladder and it affected bowels. Now I seem to be having a neurology side affect from the drugs shaking feeling internal and a little external. I also am on Wellbutrin 300mg and Prozac 40mg for depression.
I take only Ibuprofen for the extra pain now cant handle the head feeling from hydrocodone any longer. anyone else in my shoes I look fine so no one believes that I could be disabled but haven't been able to work since July 24th 2006 well thats my story I Just had my 52nd birthday and looking for anyone like me or close. thanks all for any awnsers :zombie:

[Danine]

Sounds like you're having neuropathic pain. Neurontin/Gabapentin can work wonders! Start it slowly and work up until you find a dosage that takes care of the pain without making you dopey.

[arndog]

I second what Danine says. If you don't have neuropathic pain, I will eat my..AFO! Neurontin and Lyrica can help and so can Elavil 25 mg at bedtime. The combination of the 2 keeps the neuropathic pain mostly in check for me.
Find a doc who will prescribe these, and oh, once you are used to them, they shouldn't make you dopey like narcotics. Some people will say they couldn't get over the initial groggyness from the Neurontin and Lyrica but I bet most people do, they just don't post here so much.

[dejerine]

arndog

if you don't mind my asking, what is the dosage of lyrica and neurontin you take. Does this mix titrate up and down to relieve pain to a greater or lesser degree, or does pain relief come in at some particular level?


I agree this pain sounds like nerve injury pain.

[arndog]

I guess I should have written Lyrica or Neurontin. I am only on Lyrica 150 BID and Elavil 25 mg qhs.

[Zoso]

I guess I should have written Lyrica or Neurontin. I am only on Lyrica 150 BID and Elavil 25 mg qhs.

I'd ask your Dr. about upping your dosage of Lyrica to begin. I take over twice that a day. Sounds like we have the same symptoms too. Even the slightest touch on my foot hurts and starts burning sometimes for hours.

I hope you find some relief, hang in there!

[rydep12]

HELLO EVERYONE! This is my first post on here, and one of my biggest questions about the burning pain. All of my pain is from my waist down, I am a C4 C5 1 1/2 years post. I used to be on 1600 mg of Neurontin, now I am on 600 and nothing has changed. I have been on 600 for about eight months now and I guess I've just learned to deal with the pain. Some days it is so bad, and then some days there is absolutely nothing, doesn't even matter how I am sitting, or what I am doing.

So my question is, should I ask my doctor to change medication? or start taking more of it till the pain stops?

[Wise Young]

HELLO EVERYONE! This is my first post on here, and one of my biggest questions about the burning pain. All of my pain is from my waist down, I am a C4 C5 1 1/2 years post. I used to be on 1600 mg of Neurontin, now I am on 600 and nothing has changed. I have been on 600 for about eight months now and I guess I've just learned to deal with the pain. Some days it is so bad, and then some days there is absolutely nothing, doesn't even matter how I am sitting, or what I am doing.

So my question is, should I ask my doctor to change medication? or start taking more of it till the pain stops?

rydep, for many people, 600 or 1600 mg per day of gabapentin (neurontin) is not enough for most people. Have you ever tried amitriptyline (25 mg/day)? Amitriptyline is cheaper, have less side effects (at 25 mg/day), and may be as effective as gabapentin alone for many people. Sometimes amitriptyline and gabapentin together will provide better relief from neuropathic pain. People then use other drugs only for "breakthrough" pain.

Wise.

[arndog]

rydep12 - that is such a good question you are asking and such a difficult one to answer. It sounds like you are saying, I am surviving with the pain I have now, I am dealing with it BUT it is there and some days it is brutal.
I would answer the question by asking yourself if I can tolerate this for the next 10 years or should I try to get better control over it to get more of my life back. You have to weigh the side effects of any drug you go on with the benefits you get too.
Maybe the swings in good days to bad days are greater now that you are on a lower dose of Neurontin. If you were tolerating it, maybe you should explore again going to even higher amounts like 2400mg daily and see if life is better.
I don't know what else you are on, but low dose Elavil, like 25 mg or 50 mg at bedtime, has been shown to work in conjunction with neurontin or lyrica to decrease neuropathic pain. At that low dose, the side effects are minimal and even beneficial - sleepiness at bedtime.
I might ask to try that for a week or two and see if it increases the good days, and diminishes the bad days.
I personally found Lyrica helped with NP better than neurontin although I admit I didn't get up to higher doses.
But, the pivotal question is whether where you are is good enough pain control to live the life you want or do you want to pursue improvement if the side effects are not too bad.
What does your pain doc have to say?
What would be his next move for you?
Good luck.
Jon

[bdvaneven]

rydep12 - that is such a good question you are asking and such a difficult one to answer. It sounds like you are saying, I am surviving with the pain I have now, I am dealing with it BUT it is there and some days it is brutal.
I would answer the question by asking yourself if I can tolerate this for the next 10 years or should I try to get better control over it to get more of my life back. You have to weigh the side effects of any drug you go on with the benefits you get too.
Maybe the swings in good days to bad days are greater now that you are on a lower dose of Neurontin. If you were tolerating it, maybe you should explore again going to even higher amounts like 2400mg daily and see if life is better.
I don't know what else you are on, but low dose Elavil, like 25 mg or 50 mg at bedtime, has been shown to work in conjunction with neurontin or lyrica to decrease neuropathic pain. At that low dose, the side effects are minimal and even beneficial - sleepiness at bedtime.
I might ask to try that for a week or two and see if it increases the good days, and diminishes the bad days.
I personally found Lyrica helped with NP better than neurontin although I admit I didn't get up to higher doses.
But, the pivotal question is whether where you are is good enough pain control to live the life you want or do you want to pursue improvement if the side effects are not too bad.
What does your pain doc have to say?
What would be his next move for you?
Good luck.
Jon

I would agree w/Jon. If you have neuropathic pain everyday as you know will be different. Valium probably won't do anything for you. Has it worked for you? I am a C6-C7 Incomplete sci and I have good days, bad, and really bad days. On my good days, I don't need to take as much medication. Don't get me wrong I don't take myself off immediately because you can actually have withdrawl symptoms like seizures or even death. I have a very small suppy of narcotics for break through pain but am very reluctant to use narcotic medication. I would agree that Lyrica, Neurotin, oxycarbazepine, Elavil might do the treat for you. Also don't rule out stress and depression when it comes to pain. The valium would be better for stress. Any of the Benzodiaepine or sedative medications would work for stress. How can you have a medical problem for so long and not be depressed? Whatever you do though, don't get hooked on narcotic medication. Narcotics decrease your tolerance to pain. Good luck and God Speed!

[rydep12]

I would agree w/Jon. If you have neuropathic pain everyday as you know will be different. Valium probably won't do anything for you. Has it worked for you? I am a C6-C7 Incomplete sci and I have good days, bad, and really bad days. On my good days, I don't need to take as much medication. Don't get me wrong I don't take myself off immediately because you can actually have withdrawl symptoms like seizures or even death. I have a very small suppy of narcotics for break through pain but am very reluctant to use narcotic medication. I would agree that Lyrica, Neurotin, oxycarbazepine, Elavil might do the treat for you. Also don't rule out stress and depression when it comes to pain. The valium would be better for stress. Any of the Benzodiaepine or sedative medications would work for stress. How can you have a medical problem for so long and not be depressed? Whatever you do though, don't get hooked on narcotic medication. Narcotics decrease your tolerance to pain. Good luck and God Speed!

rydep12 - that is such a good question you are asking and such a difficult one to answer. It sounds like you are saying, I am surviving with the pain I have now, I am dealing with it BUT it is there and some days it is brutal.
I would answer the question by asking yourself if I can tolerate this for the next 10 years or should I try to get better control over it to get more of my life back. You have to weigh the side effects of any drug you go on with the benefits you get too.
Maybe the swings in good days to bad days are greater now that you are on a lower dose of Neurontin. If you were tolerating it, maybe you should explore again going to even higher amounts like 2400mg daily and see if life is better.
I don't know what else you are on, but low dose Elavil, like 25 mg or 50 mg at bedtime, has been shown to work in conjunction with neurontin or lyrica to decrease neuropathic pain. At that low dose, the side effects are minimal and even beneficial - sleepiness at bedtime.
I might ask to try that for a week or two and see if it increases the good days, and diminishes the bad days.
I personally found Lyrica helped with NP better than neurontin although I admit I didn't get up to higher doses.
But, the pivotal question is whether where you are is good enough pain control to live the life you want or do you want to pursue improvement if the side effects are not too bad.
What does your pain doc have to say?
What would be his next move for you?
Good luck.
Jon



Thanks for the advice guys! Just like today, no pain at all! Woke up, and felt great all day. I was up in my chair for approximately 10 1/2 hours, and still no pain now. I guess when the pain is there, I am able to block it out. It's not like it is affecting my life right now. It is just what I am doing nothing, like watching TV or laying in bed I think about it and it kind of bothers me. It is not keeping me from sleeping at all. And I do not want to take lyric just for the risk of gaining a bunch of weight. I have an appointment with my spinal doctor and then my neurosurgeon at the end of January. Maybe I could ask them if there's something I can take on just the really really really bad days. I wanted to decrease my Neurontin just to get rid of some extra pills, and by doing so nothing changed so I stopped at 600 mg. Thank goodness I never had any side effects or withdrawals!

[bdvaneven]

Good luck rydep12 and God bless! Have a Merry Christmas! :)

[arndog]

rydep -
I will throw this suggestion out to you. If only 1 out of 3 days are bad days and you want to take some thing 'as needed', maybe you should consider narcs, like 5 or 10 of oxycodone to take as needed. You won't be taking them chronically and you won't develop tolerance. I just don't know if people use lyrica or neurontin on an 'as needed' (prn) basis.
For me, 3 out of 4 days are bad days without lyrica or elavil, so I will take these daily and put up with their side effects. I have found that by doing so, I don't reach for the narcs as much for relief and I was able for some reason to get off Celebrex....
I hope this helps,
Jon