Does anyone else have a lot of pain in their feet? It is a pretty severe pain especially at night in bed. It is a burning, tingling pain like they describe for diabetic neuropathy pain. My PCP and neurologist (that does not understand AMN) calls it neuropathy. I wonder if it is caused by AMN? Nerve damage? I do not have diabetes. Thanks for any ideas, John

John, I also have burning pain in the soles of my feet mostly at night, too. There are a few of us males who have this but it is more prominent with carriers. I take 300 mg of Gabapentin and sometimes I'd take 600 mg if no relief. Yes, it is neuropathy and it is caused by AMN. I think this is a phenotype expression of AMN and I'd wish they would include this with AMN symptoms. I'm glad you posted. You are not alone.

Thanks Tunesmith! It is 4:55 AM and I am up because I cannot sleep because of this neuropathy. It has gotten progressively worse over the last few years. I have tried gabapentin and Lyrica with no help. It only hurts bad when I go to bed. I have only tried these drugs at bedtime. Without gabapentin, does it hurt all the time or just at bedtime? Do you take gabapentin all day or just when it hurts? Does it work well? I really appreciate your response and it helps to know that it is from AMN and not something else. I had one other response and he said gabapentin and a muscle relaxer. Thanks again for responding, John

Yes, the burning is present during the day but surely not as bad as it is during the night. My guess is that we are more mobile and active during the day, perhaps more circulation? I do not take any Gabapentin during the day because of the drowsy effect but it does help; nevertheless, it is slow acting. I know there are some who experience this neuropathy who take opiate drugs. I have considered medicinal cannabis which is legal here in California which is also taken by people with neuropathy. Do you belong to inspire.com? There are more postings about the experience with pain and treatment.

Hi Tunesmith and thanks, Gabapentin didn't do anything for me. Interesting that you said some take opiates. I had a neck fusion this year and was on hydrocodone and muscle relaxers. Feet didn't hurt a bit! I really don't want to take these drugs all the time because they make me constipated. We don't have medical pot in Texas yet. Wish we did. I am 64 years old and started having AMN symptoms in my late 30's. Do you mind me asking your age & when you started having symptoms of AMN? The only reason I ask is that I feel very fortunate I was older than many when AMN showed up and that I did not have ALD. I suppose everyone is different. Thanks for the tip to go to inspire.com. I have never heard of it. I am going there right now. Thanks again, John

I am 54 and have a brother, 56, also diagnosed with AMN. It all started when I was 17 when I was tested for Addison's because my brother had an Addisonian crisis. I have no idea why it was suggested that I get tested. Fast forward 20 years and my brother advised me to test for AMN when he was having drop foot and gait problems. Consequently, I tested positive which explained why I wasn't able to pick up my feet when running and sometimes I was clumsy. I have a half brother who I heard passed away at an early age which I now think it was because of ALD. Yeah, the opioids scare me because of the addictive nature and now pain doctors are leery prescribing them since it has to be reported because of the Rx abuse. You will find a wider audience with Inspire.com. Also check the women carriers for neuropathic pain. There is also another community at healthunlocked.com.

Hi tunesmith- Thank you for telling me about inspire & healthunlocked! I signed up for both under "UnsTexas". I will be searching there for a while. Just so I am clear, you take gabapentin only at night right? Did it take several nights to work? If so, about how many nights did it take for you? I may give it another try. Thanks again! John

I honestly think 300 mg of gabapentin combined with the baclofen helped. But now that I'm getting off the baclofen, I may increase the gabapentin which I heard may also help with the spasms. The most I've taken of gabapentin was 600 mg for severe pain but it takes awhile to become effective. However, you can just remove the capsule and mix the contents in water for quicker release. And yes, only at night because this makes me drowsy combined when taking with baclofen. Note: maximum dosage of gabapentin is 1800 mg. I don't know what your previous dosage was.

Hi again Tunesmith! You have been more help to me that my doc! I kinda figured that it took gabapentin several days to start working. I didn't give it enough time. I was taking 300 mg I think? I really like the idea of only taking one pill at bedtime and not several times a day. My doc gave me "tizanidine 4mg". I only took it at bedtime and it didn't work. The nurse then told me to take it 3X a day and it helps some. I think I'll ask him about giving gabapentin another try. I like the idea of taking a muscle relaxer to help me go to sleep! Anyway, thanks for all your help. I wish I could return the favor. Thanks again, Merry Christmas to you & yours, John

Hi John, Just so you know the nighttime dose helped me curb the pain. My pain is not too intense during the day enough for me to take Gabapentin because I already have fatigue and I do not want to add to it. I copied this from a Google search: "It takes about a week for gabapentin to start reducing nerve pain, and two weeks for it to take full effect. Source: Gabapentin for the Symptomatic Treatment of Painful Neuropathy in Patients With Diabetes Mellitus A Randomized Controlled Trial, Backonja et al. ( 1998).Nov 5, 2016" Let us know how this works out. And you're right about doctors. I learned everything from these communities and if I help others, then I am also giving back to our community. Thanks John, and Merry Christmas to you and yours, too.

That helps! I did not give the gabapentin enough time to work. I quit after just a few days. I had two different docs tell me that if you quit gabapentin, you have to wean yourself off. Thanks Again! John