I am looking for suggestions and answers....
Here is a reply I added to the comments of my blog post "I'm Crying Right Now".
"I'm a mess, it's obvious that I have peripheral neuropathy, but I also have most of the symptoms of autonomic neuropathy, and I have a couple symptoms of both radialoplexus and mononeuropathy.
Of course, the doctor hasn't confirmed anything but peripheral because that is the neuropathy of the symptoms I saw him for.
Do these suggestions you've all so kindly offered (Diet, vitamin b's, oils, etc.) help all kinds of neuropathy? I'm mostly worried about the peripheral and autonomic because of the pain and numbness from the peripheral and the very worrisome problems I am having from the autonomic.
As I get my BG's under better and better control I notice fewer symptoms of the neuropathies, but they are definitely still there! I know it takes time, but I'm trying so hard to get well and it's just one health disaster after another. And all these problems keep sending me back to the thought's I had when I watched my dad die from diabetes...
"He took such good care of himself and still died...why should I even try?""
Essentially, what can I do, besides BG control, to help all types of neuropathy, but especially peripheral and autonomic?
I have had peripheral neuropathy for many years, and my neurologist thinks I may have autonomic neuropathy too. Good BG control includes a low A1c (preferably no higher than 6.5 according to my endo). It also includes some stability without many highs and lows. I had excellent A1c's for almost 15 years, consistently below 6.0, but I still developed some spots of retinopathy and neuropathy too. That occurred because I had a roller coaster control with too many highs and lows. I started using a pump and then there were not many highs and lows. My retinopathy disappeared and has not bothered me for 7 years. The neuropathy is still there, but it rarely bothers me now. So many people think that a low A1c is all that they need to avoid or reverse diabetes complications, but an unstable BG control with lots of highs and lows can still cause the complications.
Hi Tiki. It sounnds like you aand I are on the same journy. P/N iis bad enough, but autonomic is just plain god awful. I have been working to stop and/or reverse my symptoms for the last 4 years. Even though I have been much more successful than any of my doctors believed I could be, I still have all of the samme issues. Just that they are much less severe andd much moe managable.
As far as I have been ale to figure out there are only two things that truly make a difference in this fight. The most important is normalized BG. By that I mean normal, 70 to 100 with an A1c of 5.5 or better. Easier said than done, but it is doable. I still chase my BG at times, but mostly I am between 70 and 115. My highest A1c foor the lat 4 years is 5.7. It has taken and still takes a lot of study and experimenting too makle this happen, but it is worth it. I eat very low carb and use as little insulin as possible each day.
The other thing is a supplement, r-ala (the R is critical, ala is not the same). I found out about it early on. My doctors all approved of it (though none of them told me about it). I started by taking 1200 units and realized some relief immediately. Not a miricale but I did snotice a difference. I hhave tapered off to 200 units per day now. It helps the body repair the insulating fat layer around the nerves. Study this for yourself. I higjhly recommend this .
Actually, there is one more thing. Time. This is a very, very slow process when it comes to reversig symptoms. here is a very good study by Johns Hopkins that shows it takes 2 years for the nerves too BEGIN healing in regards to P/N. I personally found this study to be accurate.
I would be glad to chat more about this if you would like. If you want to have some more specific dialouge regarding some of the more unpleasant aspect (especially autonomic) feel free to messsage me. I hope this helps and good luck.
Hey Tiki, really sorry to hear about all the awful neuropathies. I’m just wondering if you use a pump/cgm? As Richard says, it really helps smooth out the highs and lows, when you work at it with these tools. I don’t even have cgm and I still struggle with eating disorders, depression etc. so my control is far from what it could be, BUT since being on just the pump the last 2+ years, the highs and lows are much milder and less frequent, and my painful prickly leg & foot neuropathy has mostly gone now. It took time but there is a huge difference. HbA1c is mostly the same (~ 6.5) but it is the smoothing out which has made the difference.
Also, I was advised by a German woman who was accessing a lot of German Diabetes literature, to take Alpha Lipoeic Acid for neuropathy. Can’t vouch for this personally I’m afraid, but just in case you want to go research it…
I am onn MDI and I control highs and lows with diet and exercise (mostly just walking). My average insulin use is 30 units basal (Lantus) and 2 to 6 units fast acting (Humalog) per day. I have gone 1 to 2 weeks several different times and used no fast acing at all. I have found that I DO NOT get crashing lows unless II haave too much active insulin of either type. I don't get highs because I don't eat things that will cause them. I check my BG about 6 times per day. I have been at 200 one time in the last two years and that was after multiple steroid injections, which is about the only time I get over 140. My averge A1c for the last 4 years is exactly 5.5. It's all about unnderstanding your body and the choices we make in management. I have made the choice to eat in a way that cause the least requirement for insulin. Thiss makes a pump irrelevent and a CGM unnecessary. Besides that vision and dexterity issues mean I would be less able to manage thhese tool unassisted.
As for the Alphaa-Lipoic Acid, That is the r-ala I mentioned before. It works.
Thanks for the suggestions. I am compiling a list of things people are suggesting to try and will be giving them a go soon.
I have been regulating my BG's by diet, exercise, and old school Novolin N and R, and checking my BG's a million times a day! As you can see, it is very difficult doing it so old school...but that is where I am stuck until the referral my primary put in to an Endo goes through. It's a long story as to why I am where I am right now...if you are interested, I have posted many blog posts about my life and health issues. The very short story is that I never took care of my diabetes growing up (diagnosed in 1987), and went from 2007 to 2013 without insurance which didn't help. And once I got insurance back in 2013, I started a journey of surgeries (heart and right eye, five surgeries in less than a year)and, of course, trying to get the BG's under control. I was just diagnosed with peripheral neuropathy this week even though I've had the terrible leg pain when active since 2007.
I haven't been diagnosed (because I have not told my doctor about the symptoms) with any other type of neuropathy, but I do have almost all the symptoms of autonomic neuropathy.
I noticed the symptoms of neuropathy get worse a few months ago, when I was really noticing a positive change in my BG's. Now that I have been getting more and more stable, the neuropathy symptoms have been getting a bit erratic, but also a bit less severe. It's strange.
Other than BG control, I am on Gabapentin (300MG every 12 hours). I'm not liking it much because of the side effects (unstable wobbliness, forgetfulness) , but since I've been on the 2 pills a day I have noticed a very mild lessening in leg pain when active.
There is something you need to understand about this healing process. This has been my experience and other have noted the same issues.
If your BG has been mostly high for a period of time you WILL have more pain and feel like your symptoms are getting worse instead of better. as you bring your BG under control. Then, once you get past that par of the process and begin to realize you actually ARE getting better, some things will seem to relapse. This situationn is temporary and is actually good news. That's because (in my experience anyway) these isolated "relapses" are actually signaling some ongoing repair. Each time they happen, I realize that the related area has a noticable improvement. Not a huge improvement, but something I can quantify. These pains may last a few hours, days or even a week or more. BUT, evvery time they leave me a little better off. This continues to bee true today, after 4 years of effort.
ood luck Tiki. Hang in there and keepfighting.
Thank you, you are very helpful. :)