Does Anyone Have Peripheral Neuropathy?

[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?