Neuropathy due to long untreated diabetes

Hello @chromebottle50, welcome to Mayo Connect. We are glad you found us - Connect is a great place to share your health concerns, ask questions and find out what other Connect members with similar health concerns are doing for treatments. Has your doctor prescribed any medications to help with the pain or is it something you have just been living with until it became worse?

I have idiopathic small fiber peripheral neuropathy (SFPN) but only have the numbness and no pain. Mayo Clinic does have some information on diabetic neuropathy here that may help: http://www.mayoclinic.org/diseases-conditions/diabetic-neuropathy/basics/lifestyle-home-remedies/con-20033336.

There is also a discussion on Type 2 Diabetes that you may want to read through to see if you can pick up any information that will help:
Type 2 Diabetes: I have neuropathy in my feet and legs: https://connect.mayoclinic.org/discussion/neuropathy-in-my-feet-and-legs/

Hoping some others will join in and share their story. There are a lot of different causes and types of neuropathy and it can be a challenge to find something that will help you. This is a good place to start. Keep asking questions, you are your best advocate.

John

Hello @chromebottle50 - I was revisiting your post and see that no else has responded. Do you mind my asking what treatments you have tried to help with the pain? Are the pains and cramps mostly in the legs? Have you made any changes to your diet to treat your diabetes?

I am tagging other Connect members to see if they are able to offer some suggestions for you. @jimhd, @loisogden, @materk, @hopeful33250 do you have any suggestions you can give @chromebottle50?

Also, there is an article “VM202 gene therapy eases symptoms in painful diabetic neuropathy” on Diabetes.co.uk website that may offer some helpful information:
http://www.diabetes.co.uk/news/2015/Mar/vm202-gene-therapy-eases-symptoms-in-painful-diabetic-neuropathy-91359885.html
John

@chromebottle50; Welcome to the site and group. I don't know a lot that I can offer in the way of help other than to let you know that you are absolutely not alone and I have found the members on the site to be very supportive, enlightening, and kind. I am diabetic due to losing about 1/3 of my pancreas and the cells located there that produce or encourage insulin production. My neuropathy is very minor at this point and I am trying to do the things that are supposed to delay it's worsening as long as possible. Controlling my blood sugar and some exercise are supposed to help and possibly even reverse some neuropathic pain. I hope you have found a doctor/endocrinologist who can help you with the treatment of your diabetes. Godspeed!

Hello @chromebottle50

I agree with both @gman007 and @johnbishop. If you would talk with your endocrinologist regarding some physical therapy and an exercise plan that would be most helpful to you.

While I'm not a diabetic nor do I have neuropathy, I do have rigidity in my legs and feet due to a Parkinson's and therefore I have a lot of discomfort. Physical therapy has provided me with some wonderful stretching exercises and that are very beneficial. I've been able to get my pain level down from a 7 or 8 to about a 4 or 5 most days by stretching exercises alone.

Have you done any physical therapy yet? Will you keep in touch and let us know how you are doing?

Teresa

@chromebottle50 - Have you been able to find answers in other discussions here? I have idiopathic peripheral neuropathy, which means it's not diabetic, and the doctors don't know the cause. We're just trying to treat the symptoms, specifically the pain in my feet.

Jim

Hi John, I too have been diagnosed with SFPN, and also have only stiffness, though it has spread from the balls of my feet to the entire bottoms of my feet. Have you found anything that has helped your condition?
Thanks,
Dave

Hi Dave (@dmarano2000), I have found something that I've had some success with. It's a protocol of over the counter vitamins and supplements that I take daily that work together to repair damaged nerves. When I first started taking them I had numbness from my toes up to just below the knees in both legs. After about 2 months the numbness was receding and it feels to be just above the ankles. It was September 2016 I started taking them and noticed results gradually until December of last year. I'm still taking the protocol but I haven't made any additional progress. If that's my new normal, I'm OK with it because it means at least it's not getting any worse like it was before I started on the protocol. My neurologist had told me it would continue to get worse gradually until it affected some motor/sensory nerves affecting internal organs. I can't guarantee it will work for anyone else but it has helped me and quite a few others in the group that I found it through. That said, it's one of those things that you have to do your own research and use your own best judgement as there are a lot of companies and products making money off people with neuropathy. I absolutely hate taking medications so it was an easy call for me since I don't have pain with it. Unlike my polymyalgia rheumatica (PMR) which I'm on my second occurrence and trying to taper off of prednisone.

If you would like to know the details, I posted my story here and it has a link to the group where I found the protocol.
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985
Hoping you find something that works for you too...

John

Though I am not diabetic I have neuorlogical disorder, Ulnar neuropathy, not able to walk upstairs, not able to perform hardwork. Blood thinner Asprin & Lipitab till date I am using. But pain in left leg & hand continues. Is there any remedy for this neurological disorder? Also explain whether it is progressive.

The only things that I have found that is OTC are CoQ10 (often recommended for anyone on a statin for cholesterol) and turmeric. My wife actually gets more relief from the turmeric than I do for muscle tension pain. I take it and antioxidant supplements for inflammation since that is one of the primary pain factors for my pancreatic pain. I think inflammation is responsible for much of our bodily pains, but that is just a lay person's belief. I do not experience pain with neuropathy right now, but have the tingling in hands and feet. I hope this helps a bit, but I don't have any specific experience with your form of neuropathy, but there will be some others who will jump in here.

@venki

As far as I know, neuropathy is progressive. The neurologist started me on Axathioprine recently, which is supposed to slow the progress.

Are you seeing a neurologist? Between the neurologist and the pain specialist, they're doing all they can for my pain. There are many neuropathy medications that could help you.

Jim