Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Burning Feet

Unsworthj Message
28 Oct 2016, 04:00 PM

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
tunesmith Message
29 Oct 2016, 05:24 AM

John, I have AMN with Addison's and also have the burning neuropathy you described and especially at night, too. It seems apparent that women carriers often have this symptom, although, there have been men on various AMN sites with this complaint. I take only 300 mg of Gabapentin at night for the pain as I cannot take this medicine during the day due to the drowsy affect. Combined with Baclofen l50 -70 mg) it makes a sleepy cocktail. But in answer to your question, yes it is caused by AMN and perhaps a different phenotype or expression.
Unsworthj Message
29 Oct 2016, 10:35 AM

Thanks Tunesmith! I now know the cause! That's huge! Thank You! I tried gabapentin and it didn't work. I am trying Lyrica now and it helps "a little". You also helped me by telling me about Baclofen. Is that the stuff that puts you to sleep? I can't sleep and have had this problem for years. I'll ask the doc if I can try it. What kind of doc told you that the foot pain was caused by AMN? Did he know for sure? I wonder how common it is with AMNers? It's more common in women AMNers huh? Thanks again Tunesmith! John Fort Worth, Texas
josepanton Message
29 Oct 2016, 01:29 PM

Hi there, I have AMN with Adisson's too, but in my case I can't call pain what I experience at night, before sleep, in my feet. Sometimes it costs a little bit to fell asleep because I have spasm in my feet, not very hard, but they move unwittingly so it tooks half an hour to finally fell asleep. Best wishes and greetings from Barcelona, Spain,
Unsworthj Message
29 Oct 2016, 02:00 PM

Thanks Josepanton, I am glad that you do not have this neuropathy pain. My wife and I love Barcelona, it is a beautiful city! Thanks for responding, John Unsworth Fort Worth, Texas
shelmom533 Message
31 Oct 2016, 01:44 AM

Hello all, I am a sixty-one year old woman, I started having crazy symptoms of "tingling legs and tight feet" about five years ago. I was seeing several doctors due to some feet concerns from a running injury, and would mention these symptoms to them and they would look at me like I WAS crazy! A neurologist even told me, "yes, you have a neuropathy, but if it's not diabetes...." she shrugged her shoulders in a "I don't know what to tell you" type of answer. Well, I became very frustrated, and the symptoms became more intense. I describe the feeling in my feet as that of them being squeezed in a vice-grip ALL THE TIME! Although we knew that ALD was present in our family, with two brothers and a nephew with symptoms, we were always told by the doctors, "women carry it, but men get it" - so I had no thoughts that these symptoms would be related. Randomly, my sister was doing some investigating because her 25 year old son was suffering. She came across the following video on YouTube: which explains the disease in the best way I have seen. About in the middle of the video the commentator explains how women can start having symptoms of "tingling legs & tight feet" in their fifties- WOW, it was right in front of me, but I never gave this disease a thought!! It was a good/bad revelation - good to know I wasn't crazy, bad to know I had an incurable disease that will affect me the rest of my life. The missing gene was confirmed through a blood test, and I was able to be seen by a genetic neurologist at Mayo Clinic in Minneapolis. I am a "naturalist", preferring not to put drugs in my body - especially when they are not proven to help. I continue to work, but it is becoming more and more uncomfortable every day. Sleep is a real problem for me as well, John! I just try to keep a positive attitude and put one foot in front of the other every day. I love to run, and ran three marathons before symptoms started, but running, too, has become more and more difficult. I would love to hear from any other women that have had AMN hit them in their "Fifties' - I do not know anyone else that I can compare notes with. If you have not seen this video, do watch it! It was very helpful for our family, with six members at this time diagnosed with the missing gene, the video explains the different types of symptoms involved. Also, John, make sure you find a neurologist that is willing to learn about the disease, it is so rare, that it does a special doctor to take on the cause! The five living members in our family all see the same neurologist in Grand Rapids Michigan. Shelly
tunesmith Message
31 Oct 2016, 03:47 AM

Hi Shelly, I am also a member of and there is a discussion thread Women Carriers with Pain where you will find support: Also, try and they have information and videos (probably includes the one you saw). John, by joining these online groups I've learned so much and I have informed by medical care support: Physician, Endocrinologist and Neurologist. The Baclofen is used to stop my feet from spasms and jerking which is most pronounced in the nite. Sometimes I have taken 600 mg of Gabapentin to alleviate the burning pain. When it is most severe, I wish I could detach my feet (amputate). But is a constant bother. You are not alone.