Does Anyone Have Peripheral Neuropathy?

[Daisy and Delilah]

I hope we don't have another thread on this. I couldn't find one. Does anyone here have it and what can you say about it? Do you take medication for it and what is it?

I found a thread where Slick said she has neuropathy. Slick, if you're seeing this, how are you doing?

I've had it since 2007 and it just gets worse every day. I was given Lyrica to start with and that made me worse. Now, my doctor has prescribed Gabapentin/Neurontin.....2 300mg. capsules 3X a day. I'm trying to take that much but it's not easy. I would love to hear from those of you that have this and learn some new ways to deal with it.

[caseysmom]

My husband has it in his feet, notriptolin (sp) has helped him tremendously.

[Medusa]

I have neuropathy in my right hip, down my leg and in my lower back from a bout w/shingles a couple of years ago. When I first realized that the pain wasn't going to leave, I became frantic because I was cleaning houses at the time and didn't know how I was going to cope. I'm on pain meds, though, and they help and there are some days when I don't need as much. I won't try Lyrica or any of those drugs because I'm just too sensitive to meds and it's bad enough that I'm on pain meds. I hope that you get some relief soon because in the beginning it can be maddening. :love:

[pomtzu]

Terry - I have it and have taken both Lyrica and Neurontin - but neither offered any relief. The only thing that Neurontin did was knock me on my a$$. I slept for 18 hours straight after only one dose. :eek: A very strange reaction for me indeed, since I have a very high tolerance to drugs.

So I take nothing. I've just learned to grin and bear it unfortunately. :(

[kokopup]

I have radiation induce brachial plexopathy that I take Neurontin 400mg x 3 and Trental 400mg x 3. The Plexopathy effects both shoulders and both hands. I have chemo caused neuropathy in my feet that only causes me problems at night. I take phenobarbital 30mg and Lorazepam 1mg that helps me sleep. The phenobarital was prescribed for my low blood pressure but has the side effect of helping me sleep. I recently started taking 600mg of Ibuprofen also to help with the pain. Most of the time I need heat on my feet or I cant sleep. My feet actually feel warm to the touch but my brain says they are cold. I have a few more neuropathies that do not qualify as Peripheral.

[Daisy and Delilah]

I'm amazed at how many of you have neuropathy. I have been told I have peripheral neuropathy but I probably have other types as well. Thanks for the responses. This has plagues me for the longest time. As I tried to explain to my mother about this yesterday, I decided to ask my PT community and see what I could get. As always, you guy have come shining through.:)

I can't take all the Neurontin as prescrbed because I'm like you, Ellie. I couldn't wake up. All I wanted to do was sleep. My doctor had me "taper up" to the large dosage and I still can't do it. It erases my memory, increase my appetite, makes me dizzy and nauseous. I had tried Lyrica and it made me worse. The Neurontin/Gabapentin calms the pain but I can hardly live with it. One of the worst side effects is the fact that you feel like eating all the time.

I didn't realize there were other meds available. That's interesting.

Mary: Thanks. You're so right. It is maddening. It's the most irritating pain I have ever had. I was at a point that I would almost do anything for relief. However, we have to draw the line. When the choice is, pain or a zombielike state, I have to try to choose the pain. There is no way I can drive under the influence so staying at home is a popular option for me if the pain is that intense and I have to take the meds.

This disease takes over your life in many ways. It's got to be one of the cruelest of all ailments. I am amazed at how many people have it but the people that don't have never heard of it. It's like pulling teeth trying to explain it to my family. How do you tell somebody that your feet are completely numb but the pain in them is excruciating? How many times have people asked: How can you feel pain if they're numb? It's very very strange.

caseysmom: I've never heard of that medication. I'll ask my doctor about it. Does it give the same side effects as Neurontin?

kokopup: I knew someone that had cancer(God rest her soul). She had chemo induced neuropathy. She couldn't feel her feet or hands for 6 months before her death. She fell so many times because her feet were numb, she was covered with bruises. I felt so bad for her. It's interesting to hear that your's is worse at night. So is mine. About twice as bad. I also take a low dose of Lorazepam for sleeping.

My doctor doesn't know where mine came from. I'm not diabetic. I continue to dream of the day that we all find a medication that we can take or relief comes in some other way.:(

[Medusa]

When I was cleaning houses, one of my clients was a doctor and her husband was a doctor as well. When I got a bout of shingles, I called her and said that, although I had never called off work before, I was going to have to this time because the shingles was so painful. She said "Take as much time as you need. A doctor associate had shingles and neuropathy afterwards and he couldn't stand the pain and killed himself". I said "Well, it isn't that bad. If I could stand childbirth, I can stand this even though it's a totally different kind of pain". She insisted that neuropathy is one of the worst. So if you can, keep trying meds until you find the one/s that work for you. As you said, I'd rather be in pain than be a zombie but we shouldn't have to choose. A friend of mine is on Lyrica and he says that all he thinks about is food. I just can't have that. I gain weight when someone standing next to me eats a radish so it's a battle for me now that I'm older. I don't need to add that to the mix.

Good luck and please let us know how you're doing.

[Daisy and Delilah]

I know what you mean, Mary. I stand next to the lettuce in the store, 5 pounds jump on me, along with everything else adding more pounds. The old metabolism isn't like it was years ago.:)

My doctor assured me that I would get over the fatigue if I kept with the 1800mg. a day regimen. I just never reached that. He didn't know from experience, just hearsay. All I can do is take what I can tolerate and hope for the best.

Thanks, Mary, for your well wishes. I will update and I hope everyone else continues to add to this thread. I'm passionate about finding the right answers.:)

[Pinot's Mom]

I'm so sorry you're in such pain - I don't know personally, but I'm very close to someone who does...she is my friend and was my cat sitter until very recently. She has neuropathy below her knees and it's just excruciating to watch. She also has Lupus. The doctors cannot say whether one has to do with the other, but after hearing Mary got it after shingles, it makes me feel there is a connection between Immune System diseases (which both Lupus and Shingles are) and this neuropathy. I'm going to print out this thread and give it to my friend to check out the meds; I'll ask her as well what she's on, but I don't know how much help that will be. She has no insurance and is at the mercy of what the state will do for her, so I don't know how good her treatment is.

Please keep us updated and, as I said, if I get any further information I'll post it for you. Good Luck and let me know if you need to vent.

Maggie

[caseysmom]

Notriptlin (sp) was used long ago for depression and as a side effect it helps with nerve pain, he doesn't seem to have any side effects from it at all.

[slick]

I'm here but typing from work so I can't give you much information.

I won't be on PT again until probably next week so Daisy (or anyone for that matter), please email me through PT and I'll try to get back to you this weekend. Saturday I'm at a wedding and Sunday is Mother's Day but should have some computer time on Sunday evening....hopefully. Sorry. :( Yes, I still have it bad.

[Daisy and Delilah]

Thanks alot Pinot's Mom. I may need to vent.:(

I also take Cymbalta for nerve pain in addition to the Neurontin. It doesn't help much but I take it anyway. I can really see why an anti depressant would be given to people with this illness. After all the pain, you get sorta depressed. caseysmom: I'm thrilled to hear your husband is getting alot of relief from that medication. It makes me happy to know that anyone is getting relief. Does his pain get worse at night?

[pomtzu]

Terry - you said the doctors don't know what caused this for you? You have arthritis, don't you, and you had that knee replacement. Has it gotten worse since your knee surgery? That, plus the arthritis could be a contributing factor.

[Daisy and Delilah]

Yes, Ellie. I have severe osteoarthritis and I've had 5 surgeries on the same knee. That's what I believe to be what's making it worse. It started after the first surgery and has gotten progressively worse.

I forgot to mention that the physiatrist Im currently seeing has mentioned I might have a trapped nerve in that knee. I have neuropathy in both feet and legs though. The left leg has other problems and the prosthesis doesn't help the situation. The neuropathy seems to be as bad in the opposite side of the replacement but it's hard to say. Does that make sense? The nerve pain sometimes appears to just be all over the place.:(

I also forgot to ask , how many people that have it have done the nerve conduction testing and to what degree? I hear there are simple tests and other muscular tests with needles. I had the regular nerve conduction tests twice and they found enough evidence so that I didn't need the other tests.

Slick, I'll PM you.

[Craftlady]

My mom has neuropathy in both legs/feet due to diabetes. The last several years it's gotten so bad that she uses her scooter most of the time. She can still walk but it's very painful. No medications to date have relieved the pain.

[Grace]

Notriptlin (sp) was used long ago for depression and as a side effect it helps with nerve pain, he doesn't seem to have any side effects from it at all.

Notriptylin is one of the tricyclic antidepressants. These drugs are also prescribed for relief of certain types of pain. The side effects can be many and vary wildly.

I took Elavil (amitriptyline) many years ago for chronic regional pain syndrome. It did reduce the pain about 50% - BUT it caused me to have psychedelic dreams which progressed to night terrors. I decided I would rather live with the pain. Fortunately, mine is very sporadic.

[Daisy and Delilah]

I took Elavil (amitriptyline) many years ago for chronic regional pain syndrome. It did reduce the pain about 50% - BUT it caused me to have psychedelic dreams which progressed to night terrors. I decided I would rather live with the pain. Fortunately, mine is very sporadic.

I also took Elavil. It was one of the worst drugs I've ever been prescribed. I had terrible dreams and constant drowsiness. I could never wake up. I always had a hangover.:)

[Medusa]

I also took Elavil. It was one of the worst drugs I've ever been prescribed. I had terrible dreams and constant drowsiness. I could never wake up. I always had a hangover.:)

I completely forgot about Elavil. It was prescribed for me also but I gained weight and I cried all the time, so I discontinued it. Sometimes I think that the doctors don't even know if a drug will help or not; makes me feel like a guinea pig. I was also prescribed Cymbalta for fibromyalgia pain. That's the worst drug I've ever taken. I thought I would go insane.

[Daisy and Delilah]

I completely forgot about Elavil. It was prescribed for me also but I gained weight and I cried all the time, so I discontinued it. Sometimes I think that the doctors don't even know if a drug will help or not; makes me feel like a guinea pig. I was also prescribed Cymbalta for fibromyalgia pain. That's the worst drug I've ever taken. I thought I would go insane.

I've heard alot of horror stories about Cymbalta too. Luckily, I can only take 30 mg. a day. I hear the withdrawals from large doses are a nightmare. Actually, that's all I've heard about withdrawals from Neurontin and Lyrica too. The doctors prescribe the drugs and we have to deal with all the consequences. What's wrong with this picture? :(

[Medusa]

I've heard alot of horror stories about Cymbalta too. Luckily, I can only take 30 mg. a day. I hear the withdrawals from large doses are a nightmare. Actually, that's all I've heard about withdrawals from Neurontin and Lyrica too. The doctors prescribe the drugs and we have to deal with all the consequences. What's wrong with this picture? :(

I was only on 30 mg. a day of Cymbalta, too. The worst part is that it did help w/the fibromyalgia pain but I gained weight at an alarming rate. Still, I was willing to endure the weight gain as long as it helped w/the pain but after a few weeks, bad stomach cramps started, so bad, in fact, that I was doubled over and had to lie down for several hours. Hours. How do you do that when you have to work? When I called my dr's. office, I was told to stop taking it and I asked if I should wean myself off and the answer was "No, just stop". I did and that's the horror story. So if you ever do decide to stop taking it, no matter what anyone tells you, wean yourself off. Otherwise, you may get the bad side effects that I got: hundreds of brain zaps a day, nightmares, etc. I've heard that other people do well on it but I often wonder if it still works for them.

[Daisy and Delilah]

That's horrible, Mary. Thanks for telling me. I didn't think it would be hard to get off 30 mg. That is some great information for me and everybody else to know. Yikes!!:eek: