[uglogirl]

This is really getting bad. I can't tolerate the pain, numbness and buring.

Please let me know what works for you.

I am on Garbapentin 1800 mg. today so horrific took a Percocet that seem to have calmed it down to at least tolerable.

I take vitamins use creams Take b12, A.Acid, regular vitamins, use ice bags, can't tolerate heat

does this go into remission. Does it bother you all day or just have break out of the monster.

This is intolerable. How do you cope.

I am not increasing the Garbapentin I don't even know if it works. If it does I would like to know what it's doing

My short term memory is affected by Garbapentin. I work and can't increase it anymore.

Please help!
Desperate for relifef.

[zorro1]

Sorry to hear about your pain but we all know how you feel. Gaba did nothing for me and I took double your dose however Lyrica all though similar worked like a charm together with tramadol. Even better was Amitriptyline but its horrid

You need to control your pain first before you can even try to process this disease and try to heal. Demand your doctor to keep trying until you find a fit, best of luck

[St George 2013]

Bless your heart ! I am so sorry but totally understand. I have small fiber neuropathy and I think we've talked before

It helps that I don't have to work....on SSDI for this. Walking is actually my enemy but I do it some everyday....I take the dog for a walk around our 1 and 1/2 acre lot at least 4 or 5 times a day. There are some days that is not possible and I have family that will help out when I need it thank goodness. The rest of the time is spent pretty much in the recliner or bed. My feet still hurt, just not as bad.

I got up to 2700 mg of gaba but could not tolerate it. I'm back down to 1800 mg and he's added 90 mg of Cymbalta. When he first added the Cymbalta it was 60 mg and even though I could not tell a diff in the pain I could in my thought process. My mind seemed 'clearer'. But since I was increased to 90 mg I haven't done so well...not sure if it's the increase or just a coincidence. I had already started having a deep aching in my upper right arm but the pain got worse and I've just spent about a week in bed or the recliner in horrible pain. Both arms and both legs, toes much worse and cramping feeling on top of my feet and in my ankles. I just started getting better yesterday but am still having a few pains that are just annoying. My own personal pain mgmt. (with PCP) has been 1/2 a vicodin every 3 to 4 hours (usually 3) and 1/2 a Xanax when it's too much to handle. During this last week I had 2 or 3 days that I was having to take a whole vicodin and that only tapped it down to almost tolerable. This started after my 2nd week on the 90 mg.

I also cannot tolerate the heat and go stand on my terracotta porch to cool my feet off and use my "chillow' the kids gave me.

My neuro asked me during one visit if I thought the gaba was working. I told him I was still in pain and still could not even do simple tasks around the house but who knew how I'd be without it ? Laying in a fetal position on the floor ?

From what I've read and heard from my dr, he will keep me on the gaba and try the Cymbalta and if that doesn't work he will take that away and add lyrica. Not sure after that if it doesn't work. I am no where near where I want to be as far as pain levels are concerned. Stinging, burning, numbness, electrical shocks are all still here. This keeps me home 99% of the time. Traveling or driving a car is the worst for me. I'm thinking it's the vibrations on the floorboard of the car and steering wheel. I don't drive or ride unless I absolutely have to. And I'm fine with that.

Sorry to go on so long...not sure any of this helped you but I agree that you need to talk to your dr about adding something to the gaba or trying something altogether diff. Probably also need to discuss with him on how to handle the pain going forward.

How long have you been on the gaba ?

Debi from Georgia

[Susanne C.]

There is really nothing to do for the numbness. Mine is constant and involves about half of my body most of the time, my legs to the hips, arms to the elbows. I am used to it, or at least resigned. It is distracting, though.
Burning pain has moved up to thighs and hips for me, hard to sit still, going to the hair dresser or dentist is very difficult. I also get shooting pains and muscle aches in my arms and legs which would be debilitating but my pain is managed. I am on time release morphine, MS Contin, 30 mg x 3, as well as 1800 mg. of Gabapentin. With this combination I am able to function pretty well, keep house, drive short distances, shop a little, go for walks. I also have 7.5 mg of Percocet for breakthrough pain, averaging 1 per day. It isn't enough but it is what my doctor tolerates.

It can be very difficult to find a doctor willing to actually address the pain adequately, and you have to be a very cooperative patient. If they suggest other measures like physical therapy you must be compliant. Valium worked much better for my muscle spasms than Baclofen, but I have to give it a fair trial. Neuropathic pain has been called the most difficult pain to treat as well as the most painful, yet there are still doctors who dismiss it. My own neurologist, who was upset at my test results still said I shouldn't be in this much pain. I hope that you are able to find some relief. How long have you been dealing with this, and do you know your cause?

[uglogirl]

Originally Posted by zorro1

Sorry to hear about your pain but we all know how you feel. Gaba did nothing for me and I took double your dose however Lyrica all though similar worked like a charm together with tramadol. Even better was Amitriptyline but its horrid

You need to control your pain first before you can even try to process this disease and try to heal. Demand your doctor to keep trying until you find a fit, best of luck

Hi Zorro!

I had a drs apt today and am being weaned of the Gabapentin and going to start Lyrica also have some pain pills Percocet at night if needed. You're right have to control the horrid pain first.

Not for lack of trying to get help from the dr for the pain everytime I called he would up the gabapentin and say give it a week. He's not the one losing sleep and in tears from pain I am.

Thanks again.

Happy to hear you have success with Lyrica I hope I do too.

[uglogirl]

Originally Posted by St George 2013

Bless your heart ! I am so sorry but totally understand. I have small fiber neuropathy and I think we've talked before

It helps that I don't have to work....on SSDI for this. Walking is actually my enemy but I do it some everyday....I take the dog for a walk around our 1 and 1/2 acre lot at least 4 or 5 times a day. There are some days that is not possible and I have family that will help out when I need it thank goodness. The rest of the time is spent pretty much in the recliner or bed. My feet still hurt, just not as bad.

I got up to 2700 mg of gaba but could not tolerate it. I'm back down to 1800 mg and he's added 90 mg of Cymbalta. When he first added the Cymbalta it was 60 mg and even though I could not tell a diff in the pain I could in my thought process. My mind seemed 'clearer'. But since I was increased to 90 mg I haven't done so well...not sure if it's the increase or just a coincidence. I had already started having a deep aching in my upper right arm but the pain got worse and I've just spent about a week in bed or the recliner in horrible pain. Both arms and both legs, toes much worse and cramping feeling on top of my feet and in my ankles. I just started getting better yesterday but am still having a few pains that are just annoying. My own personal pain mgmt. (with PCP) has been 1/2 a vicodin every 3 to 4 hours (usually 3) and 1/2 a Xanax when it's too much to handle. During this last week I had 2 or 3 days that I was having to take a whole vicodin and that only tapped it down to almost tolerable. This started after my 2nd week on the 90 mg.

I also cannot tolerate the heat and go stand on my terracotta porch to cool my feet off and use my "chillow' the kids gave me.

My neuro asked me during one visit if I thought the gaba was working. I told him I was still in pain and still could not even do simple tasks around the house but who knew how I'd be without it ? Laying in a fetal position on the floor ?

From what I've read and heard from my dr, he will keep me on the gaba and try the Cymbalta and if that doesn't work he will take that away and add lyrica. Not sure after that if it doesn't work. I am no where near where I want to be as far as pain levels are concerned. Stinging, burning, numbness, electrical shocks are all still here. This keeps me home 99% of the time. Traveling or driving a car is the worst for me. I'm thinking it's the vibrations on the floorboard of the car and steering wheel. I don't drive or ride unless I absolutely have to. And I'm fine with that.

Sorry to go on so long...not sure any of this helped you but I agree that you need to talk to your dr about adding something to the gaba or trying something altogether diff. Probably also need to discuss with him on how to handle the pain going forward.

How long have you been on the gaba ?

Debi from Georgia

Yes you are so fortunate you don't have to work and yes we have chatted b4.

I had a drs appt today and he is weaning me off the gabapentin and going to try lyrica and also gave a prescription for some Percocet if needed so that was a plus and a good appt. He also ordered the Neurology test that can last up to 3 hrs.

I'm with you between the seizure pills, Percocet and Xanax should be tolerable.
I certainly hope so I go back to work next week.

I have not been on the gaba for long all this has just happened within the past couple months. I could not imagine 2700 mgs of Gapa I have a hard time with memory on the 1800 (yesterday had to read a pattern over and over and still didn't get it) another thing is go to do something and completely forget what I wanted to do. (I know for some people this is normal but its something new for me)

Had itching of my feet but I thought it was an allergy I have to my cat and would have tingling in my foot but nothing that I thought anything of at the time.

I understand about being in pain and not being able to everyday house chores.
I have been there and still there and If I don't have the desire I am not going to push myself.

I do exercise though on the treadmill and my reclining bike. That wonderful you do the walking it has to help you a lot.

Take care! Keep me posted on how you are doing. My prayers are with us all I never realized so many suffered from nerve pain of some sort or another.

[uglogirl]

Originally Posted by Susanne C.

There is really nothing to do for the numbness. Mine is constant and involves about half of my body most of the time, my legs to the hips, arms to the elbows. I am used to it, or at least resigned. It is distracting, though.
Burning pain has moved up to thighs and hips for me, hard to sit still, going to the hair dresser or dentist is very difficult. I also get shooting pains and muscle aches in my arms and legs which would be debilitating but my pain is managed. I am on time release morphine, MS Contin, 30 mg x 3, as well as 1800 mg. of Gabapentin. With this combination I am able to function pretty well, keep house, drive short distances, shop a little, go for walks. I also have 7.5 mg of Percocet for breakthrough pain, averaging 1 per day. It isn't enough but it is what my doctor tolerates.

It can be very difficult to find a doctor willing to actually address the pain adequately, and you have to be a very cooperative patient. If they suggest other measures like physical therapy you must be compliant. Valium worked much better for my muscle spasms than Baclofen, but I have to give it a fair trial. Neuropathic pain has been called the most difficult pain to treat as well as the most painful, yet there are still doctors who dismiss it. My own neurologist, who was upset at my test results still said I shouldn't be in this much pain. I hope that you are able to find some relief. How long have you been dealing with this, and do you know your cause?

It sounds like you have your pain under control and are very vital that is marvelous.

I to am very active and also work from home. Don't think I could work outside but didn't plan on it b4 I got this dreaded thing I am in my 60's. I know I don't look it but I am beside that picture is 6 yrs old I need to take another.



I have not have this long at all I had symptoms but didn't pay much attention to them especially the itching of my feet and some tingling. I first got restless leg syndrome that would come and go a few years ago

This comes from diabetes although my dr said my numbers are ok.
But it come from the time I have it. It has not been that long about 6 years and my AIC is in the 6's and 7's

Keep in touch you are very inspirational. Kudos for not letting this interfere with your daily life.

Uglogirl

[skutters]

Good luck, but the Lyrica still messes with the brain. It has taken me 6 weeks to get my mind working properly. Was like being in a fog for weeks followed by the forgetting things and not being on top of my game.

I seem to be ok now but I'm not as motivated as I used to be.

[uglogirl]

Originally Posted by skutters

Good luck, but the Lyrica still messes with the brain. It has taken me 6 weeks to get my mind working properly. Was like being in a fog for weeks followed by the forgetting things and not being on top of my game.

I seem to be ok now but I'm not as motivated as I used to be.

I hear you Skutters with the messing with the brain. I'll just have to take it early enough b4 I start work and I usually have a later start like 10am or sometime after that not much.

A good thing is it wears off it would be great if I could take time off from work, but I would not have a job to go back to if I did.

I work at home which is a good thing and will just have to use paper and pencil and not depend on old faithful mind of mine.

What does Lyrica help you with the most that you have noticed.

Since I have been taking the Gaba I don't get the electric currents zapping me on my legs and arms. I have also had uncontrollable foot movement that stopped too with the Gaba.
I wonder if this monster condition ever goes into remission.

It puzzles me how everything can be acting up the burning, needles, hurting then like after a storm it all stops and back to normal for a few hours.

That is interesting wonder what is going that gives this short term relief.

uglogirl

[hopeful]

Originally Posted by uglogirl

Hi Zorro!

I had a drs apt today and am being weaned of the Gabapentin and going to start Lyrica also have some pain pills Percocet at night if needed. You're right have to control the horrid pain first.

Not for lack of trying to get help from the dr for the pain everytime I called he would up the gabapentin and say give it a week. He's not the one losing sleep and in tears from pain I am.

Thanks again.

Happy to hear you have success with Lyrica I hope I do too.

Hi,
I'm glad to hear that the doctor listened to you and gave you something to help lower your pain. You are right he is not the one losing sleep and crying. I would say I wish doctors could feel how this felt, but I seriously wouldn't wish this on anyone.

I hope the lyrica works for you. Some people have great results with it.