Autonomic Neuropathy

A couple of weeks ago, I went to the Mayo Clinic in Rochester Minnesota. I have been in a lot of pain the past few months and I'm really at a point where I can't take it anymore. They told me it was autonomic neuropathy because of my diabetes. I'm currently on gabapentin which makes it somewhat tolerable, but I'm still in so much pain on a daily basis. The clinic didn't change any of my medications. They just told me I should strongly consider a pain management program. =/ Help??

one option with the pain management is getting a shot in your spine that numbs those nerves. atleast that is whjat i was told have not explored that idea yet. has anyone had that done/

My autonomic neuropathy symptoms come and go. I take Lyrica, a relative of gabapentin, twice daily, and it does help unless the pain gets really bad. Then I have "rescue" meds, mainly hydrocodone, but I also take Aleve, aspirin, and use "calming" lotion on my legs. I don't have any magic answers. I have had the cortisone injections for back and shoulder pain, and they do work, temporarily (mine helped frozen shoulder for about five months). I've not tried them for neuropathic pain. Wishing you great medical advice and freedom from pain!

OK, I'm an oddball. I have 3 kinds of neuropathy: peripheral, autonomic, and amyotrophic. The last kind caused my leg muscles to shrink and I was in a wheelchair. It took 2 years to work my way through that. Now I can get around in a stiff-legged, stumbly sort of way. Peripheral neuropathy has my feet and legs pretty much numb up to my knees. Autonomic neuropathy wreaks havoc with my digestion, gives me interesting blood pressure, and keeps me from sweating. All of this came on very fast in 2007. The doctors claim it was from very high uncontrolled blood sugar for years. I truly doubt that. At any rate my A1C has been quite fine since then just from a low carb diet. I take no medication, I was told by a neurologist there was nothing that would help (he expected I was going to die at the time). Anyway, here is the part I don't understand: I have never had any pain. I did have painful leg cramps for a couple of weeks before I was diagnosed T2, but that went away with the leg muscles. Sometimes I have the sensation of warm, cuddly socks on my feet. I'm not complaining about no pain, but I have to wonder if we're not all getting the same diagnosis for what are really different conditions with different causes. Where is your pain, Kristen Marie? I wasn't aware that autonomic neuropathy involved pain, I thought that those nerves control the automatic systems of our bodies. It seems to me that any drug strong enough to knock out pain might have a bad effect on your autonomic system. I have to be careful about that, I was given Clindamycin for an infection and it took my blood pressure down to 57/37 in 2 days. What did Mayo Clinic actually DO to diagnose your problem as autonomic neuropathy? Did they do nerve tests? Too often (as in my case) it's just a doctor's opinion based on absolutely nothing beyond the fact that you're diabetic.

I was a type 1 diabetic for about 60 years when I was told I had neuropathy in my feet. It was not very painful though and I did not use any medication. My A1c's had been below 6.0 for several years before I had that problem, but there were times I had rather high blood sugar due to my having scar tissue and the insulin not being properly absorbed. The pain gradually became worse until I tightened my control in 2007 and stopped having so many highs. I have very little problem with the neuropathy in my feet now.

In 2008 I started having a lot of dizziness, especially in the morning. I had to get up slowly and put my hand on the wall to keep from falling. It was better by noon. My blood pressure (BP) dropped as much as 50 points when I stood up from a seated position. Many, many tests were done, with no diagnosis. In Dec, 2010 it was finally determined that my BP med was causing much of the problem. My neurologist also said I have autonomic neuropathy, and the BP med was making it worse. My endo suggested a different kind of BP med with a very low dose. Lisinopril with 2.5 mg was prescribed. I have very little dizziness now and can do almost anything I want all day long.

I researched autonomic neuropathy. A big drop in blood pressure is on the top of the list of approximately 7 symptoms. There was also gastroparesis in the list. That is a digestion problem that many diabetics have, but I do not have that problem. I don't have but three of the problems in that list, and only to a moderate degree now. I think my diagnosis of autonomic neuropathy was incorrect. I was being given an overdose of BP medication. Problem solved! I agree that doctors can make big mistakes and misdiagnose. It took almost 3 years of terrible dizziness to determine I was taking too much BP medication. Now I have very little dizziness and my BP is very good.

Jan, one doc thought I had diabetic amyorophy because the pain was so horrible, and I could barely walk. The next doc said, no, my pain wasn't great enough for that. Go figure. ;-)

Right now, we're going with the idea that the DAN is causing the current problems. I was diagnosed with that in about 1999, when the main prob was Irritable Bowel Syndrome. That got better, and I had no other symptoms I connected with the neuropathy, so I assumed the dx was in error and forgot about it. NOW, after researching the topic, I can see that many of my mymptoms ARE possibly connected to DAN. What's confusing is that they are all similar to Fibromyalgia symptoms. Of course, it's possible that nerve damage could cause that syndrome, too.

I'm dealing with the morning dizziness--following a period of BP being out-of-control high, including a blackout. Now that it's near normal, I'm having the orthostatic hypotension. Can't get out of bed in the morning without a period of just sitting, and then I use a walker, in case I pass out. Doctor suggested MECLIZINE. Has anyone tried that for the dizziness? I plan to take some tonight to see if it helps.

Richard, I don't think you have to have more than one symptom to have DAN. For years, I only had the IBS. But congratulations on beating most complications for so long1 I have an appointment with my eye doc this week--first one since 2007, to my amazement. Things have always been normal before, and I pray they still are. My vision is very blurry, but that could be bGs or meds.

Diabetic amyotrophy has only 2 symptoms that I am aware of, muscle wasting and unexplained weight loss. I lost 40 pounds in a month (Okay, so yay! I'll take it any way I can get it.) That was all in my legs and butt. Along with muscle wasting is nerve damage. While I managed to rebuild muscle, the nerves are still marginal. Petite Fleur, I had absolutely no pain, and I've never read or heard anything about pain with amyotrophy. I also found that it could be caused by something autoimmune, but the docs weren't interested in investigating. Once you have that big D on your records, that's as far as they look for cause. And Richard, I had a similar experience with blood pressure before it was obvious I had autonomic neuropathy. My GP prescribed Lisinopril because "all diabetics have to take it to protect their kidneys." I had no kidney problems, but that stuff almost killed me. I kept cutting the pills in smaller and smaller pieces, and I'd still sit with my head on the kitchen counter for hours in the morning. When I'm at the doctor's office my BP is elevated, so the GP did not believe me. I bought not one, but two, BP machines of my own and kept impeccable records. I had stopped taking Lisinopril and it was maybe a month before my BP was fairly regular. Because of the Dr. office highs, the GP tried to get me to take Maxzide. I finally just said "no thanks, it's obvious the way to avoid high BP is to stay out of your office." My standing BP is always 20 points lower than the sitting BP. Again, I've never had any pain. I've never passed out, my pea brain must not need much blood to function.

I still don't have much faith in how the doctors I deal with diagnose these things. I read about muscle tests that determine which kind of nerve damage has been incurred. Never had one of those, not even when I was in a wheelchair. A neurologist ONCE tapped my knee and told me I had no response. Duh.

My conclusion is that unless they can prove what's wrong with you, be very very conservative about taking medication. My experience is that you never know how your wacko nervous system is going to react to something that "millions of people take without problems."

Thanks! i appreciate your comment. the calmiing lotion seems to work pretty well? I've tried things like ibuprofen also, but it doesn't help me much.

Before I went to the Mayo Clinic, they said there was no chance that I could even have Neuropathy because I've only had diabetes for 3 years. Wow were they wrong... They did tests at Mayo for my nerves. Prolly every test you can imagine. From shock to sweat tests. There is nerve damage.

That's interesting because they discovered that one of my sleeping medications, Amrtiptiline, was causing my gastroparisis. So now that I am off of that, I do not have it anymore.

Thats horrible!! Have you ever considered going to the Mayo Clinic? They do very specific tests to find the problem. they don't just give up like local doctors. At least where I'm at.

ok, and i'm also getting kicked around by Neuropathy and I take Gabapentin and hydrocodone. These work the best for me. But I'm always looking for something better. add B12 this week also mine seems to get worse if i have a high carb intake

Hey girly:) I would like to see what john has other than what we see is the neuropathy. He also lost about 40 pounds since the middle of September. The things I have read on neuropathy and Dka prove the hospital brought his sugar down so fast in 3 days but didnt get rid of his Keytones and should of kept him in longer than they did. Guess no insurence means no service. Others said the same things to us that the hospital should not of sent him home so soon. Johns had alot of issues and fought to figure things out. Well mom did but I'm teaching him and his wife how to work through this. talk to you sooon.

In 2005 when I was diagnosed they put me on gabapentin. In about a year and 3 months my tolerance levels for it were so high they had to take me off of it and start another drug. Hydrocodone. That helped for a while too, but again with the tolerance--this time after 4 years.

I began a pain management program three years ago. I still have to take some strong pain meds, but I also had a Spinal Cord Stimulator implanted. Sounds scary, but the stimulator covers my legs completely and just enough of my feet to make it worth the trouble of the surgery. Some diabetics don't have success with SCS (spinal cord stimulation) And in some areas it can increase pain..BUT>>>

Living with Chronic Pain from nerve damage really demands a seperate course of treatment, if you ask me, from just the primary care doctors's office. It made my life better. There are still bad days, and I have to know my limitations, but You don't have to live in agony all the time. The SCS is also not the only course of treatment from pain management. There are plenty.

Just make sure you get a good doctor who offers more options than only pills. Good luck to you and let me know how it goes.


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Does anyone know if AN can ever go away?

I've been on gabapentin and now i'm on hydrocodone. I'm still in pain and I too can see that my tolerance for the gabapentin is getting very high. I just won't know what to do if I have to get off of that... I really don't want to become dependent on pain killers. Especially at my age.

I was diagnosed with autonomic neuropathy in late 2010. There is a long list of symptoms if you Google AN, but the only one that really bothers me is bad dizziness when I am sitting and then stand up. My blood pressure can drop as much as 40 points and I have a hard time standing up for several seconds. That happens mostly in the morning. By cutting down on my BP med doasge the dizziness has improved. I don't thank AN ever goes away, but my doctor wants me to take a med that is supposed to help repair damaged nerves. He is an internist. My neurologist says that he does not believe that any med really repairs nerve damage, so he did not prescribe a med. The med my internist wants me to use is not covered by insurance and would cost me $300 per 3 month supply, which means $1200 per year. I am not going to take the med.

Thats a crazy amount of money!!! Ugh so what are you doing to help your AN now? I used to have the dizziness too but I don't get it as often as i used to.

My reduced BP med dosage has really helped my dizziness, and the other symptoms of AN are not bothering me nuch, they are mild or nonexistant. My BR is higher though, sometimes 130-145,and that is not good. I may have to increase my dosage, which would cause my dizziness to get much worse. I am stalling for the time being.

Do you experience any gastroparesis? That is in the list of symptoms of AN. I think I may have mild gastroparesis. I have a friend who has it so bad that she eats only one meal per day and it takes forever to digest properly.

They had me on a medication called amtriptiline and it turned out that that was the cause of my gastroparesis when I had it. They took me off of it when I was at Mayo Clinic and did the stomach emptying test again and it showed that my GP went away. So that was a huge plus... Kinda makes me mad that my internist didn't even consider that a possibility when that is a main symptom of it.