Diabetic Neuropathy progressing?

Sorry pushed send before I was ready..... symptoms you experienced. What helps/helped you? I am trying not to go to the doctor right away since I am on the health insurance exchange due to a layoff and the out of pocket is really high. Thanks

Hi, @lyssia -- I moved your post over to our Neuropathy group, as I thought that members in this group might have shared your experiences and have some input about the burning feet and the cold/numbness you've experienced with your calves, as well as telling you about how their neuropathy has progressed and what self-care may be helpful.

I'm inviting @techi @johnbishop @liz223 @pdsi43one and @jjwest to join the conversation, as they have all talked about peripheral neuropathy and may have some insights for you.

Have you found anything that makes either the burning feet or the cold and numb calves worse or better, @lyssia?

Hi @lyssia -- I have idiopathic small fiber peripheral neuropathy and the neurologist thought it was hereditary. My doctors have told me I am pre-diabetic for many years. My blood glucose was 108 the last time I was tested, down from 115 a few years before the last check. I think you are doing good by lowering your BG numbers and making lifestyle changes in diet as it can only help. I have no medical training or background but from my experience with my PN, the neuropathy usually starts in the extremities and works it's way inward. In my case, it started in my toes and the bottom of my feet and I asked the doctor about it and was told it's probably nerve damage but they would have to do some tests to determine if that is what the problem is. After asking if they find it's nerve damage, what can they do. The answer being nothing and I opted not to pay for the testing. Fast forward 20 years, now the numbness was just below both knees down through the feet so I had the EMG test done and was diagnosed with idiopathic SFPN...and again no real treatment options available since I don't have pain, just the numbness and tingling. Drugs and medication only address the pain issues, there is nothing available to address the numbness. That's when I started advocating for myself and found a regimen of supplements that have helped me but have not completely eliminated the numbness. I still have numbness in both feet to just above the ankles.

If you want, you can read my neuropathy story here on Connect:
-- https://connect.mayoclinic.org/comment/65985/bookmark/?ajax_hook=action&_wpnonce=6144dd1510

What I have learned in my searching is that there are a lot of people out there making money off of us folks with neuropathy, most of which is of dubious value. So you really have to do your own research and if it sounds too good to be true, it probably is.

One thing I can really recommend and maybe you already are aware of it, is to take good care of your feet. There is a good discussion by members here that you might want to read:
-- https://connect.mayoclinic.org/discussion/diabetic-neuropathy-its-important-to-take-care-of-your-feet/

Hope this helps.

John

Hi @lisalucier thanks for moving me over to the neuropathy group. I wasn't sure which one I should post on. Yes my primary care doctor suggested I try the supplement lipoic acid since it seems to help some people. I currently take r-lipoic acid and it has helped my feet with the burning feeling to the point that it had subsided, I also will use a foot massager which also seems to help. Since the cold/numb feeling is a recent development I have not tried anything for this and really wasn't sure what might help. Also right at the moment my feet burning sensation is having a flare up if you will which started with the calves symptoms. I am open to any suggestions. Thanks

Hi John thanks for responding. I read your story and it seems like, for you, it took several years for it to reach your knees? I checked out the foot care discussion group thanks for referencing it. I will check out the FB page that you mentioned. I do not have any numbness in my feet at this point just the burning feeling. I was worried about the numbness causing a person to be unsteady on their feet, have you had any issues with that? I have heard about the medicine gabapentin and that it has some nasty side effects as well as Lyrica. Do these medications slow the progression or just help with the pain? I am already on some medications for my chronic pain so hoping to not add any additional meds to that. Do you find that walking helps with your neuropathy? That was a suggestion given to me. I didn't really understand that the nerves were being damaged from, in my case, the diabetes and I find that a bit scary. I also was hoping that there was better care that could be given to help with the neuropathy other than with just the pain. Do you find the numbness to be hindering with activities that you want to do? or do you just power through anyway? I had thought my neuropathy came on quickly, but when I thought about it more I realized that I had a light burning feet feeling off and on for many years just not bad enough to be bothersome. Sorry if I am rambling. lyssia

Hi @lyssia -- I'm sorry I missed the email notification from your post. I just read your post as I was reading through the discussion again. Have you found any treatment that helps you?

John

Hi, @abd123 - welcome to Mayo Clinic Connect. I'd love to introduce you to some other members who have talked about diabetic neuropathy, like @lyssia @holhealthcare @deeinpa @barbarn @mamacita @chromebottle50 @bernese53 @clownscrytoo @hgs797 @fonda @ujeeniack @danybegood1. @jeancary @loisogden @nikkig @allisonsnow @tucsonguy and @johnbishop may also be interested and know of other members who might benefit from joining in this discussion.

While waiting for others to become involved in this conversation, I thought you might be interested in some Mayo Clinic information on diabetic neuropathy: https://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/symptoms-causes/syc-20371580.

@abd123 - do you have a question or concern on diabetic neuropathy you'd like to share with these members to get started?

Hi @abbiedem1 d123, I would like to add my welcome to Connect along with Lisa @lisalucier.

@abd123 can you share a little bit more about your diagnosis of diabetic neuropathy? Are you able to keep your diabetes under control?

John

Anyone here Suffering with Diabetic Nuoropathy? I want to connect with them.

@abd123 I was type1 diabetic since 1975 and developed complications including peripheral & autonomic Neuropathy. The peripheral affected my hands ( numbness, tingling, burning, aching, throbbing). The autonomic came in the form of gastroparesis (nausea, vomiting, cramping stomach pain, bloating, constipation & diarrhea). Whenever I was able to tighten up blood sugar control the symptoms would gradually improve. In 2005 I had a pancreas transplant and the neuropathy disappeared for awhile. I’ve had several bouts of gastroparesis since then and got this under control with a medication and some dietary changes. I take a very small dose of erythromycin as needed up to 4 times a day (at meals & bedtime). I usually only take it once a day at the biggest meal of the day. It is an antibiotic but has stomach motility properties that help with gastroparesis. Dieticians also suggested smaller meals (like a snack) more often and to limit fresh fruits, vegetables & high fiber foods. For peripheral neuropathy the hand symptoms disappeared after 2005. Seven months ago during a routine dermatology screening I was diagnosed with planters warts on my feet. That led to 2 months of ineffective self treatment (soaking, scraping, OTC warts gel & taping). I then went to a podiatrist and have been having liquid nitrogen freezing &/or acid treatments ever since. This has been torture and feels like the way other diabetics describe diabetic nerve pain symptoms on their feet. The pain just starts to subside after 4-6 weeks when it is time to return for more treatment! I’m concerned that I’ve deloped a new neuropathy in my feet associated somehow with the warts treatment. I discussed my concern with my endocrinologist who felt that my problem is due to the immune suppression from my transplant and not being able to fight off the virus causing the warts. The podiatrist felt my problem is due to the treatments working and having new & more sensitive skin (but I still have the warts). I also have CKD due to diabetes and will at some point need a kidney transplant if/when my kidney function further declines. In September I was at Mayo for my annual pretransplant review. I expressed concern about these warts, the pain I’m having and neuropathy to my team providers there. No one gave an opinion about neuropathy but suggested I inquire about the possibility of some other kind of treatment. I did that at my podiatry follow up/ treatment on October 2nd and was referred back to dermatology to find out if laser or some kind of injections would be appropriate for these warts. That will be in November. So I have a history of 2 kinds of neuropathy from diabetes and perhaps something new. Whatever it is I hope it gets resolved and the warts dealt with as well!