Mayo Clinic Connect
Hello, I have been diagnosed with neuropathy since 2010 due to long untreated diabetes. It’s a big challenge for me to manage the pains, cramps, and discomfort that I’m having to the point I don’t know what to do?
Liked by Jim, Volunteer Mentor, John, Volunteer Mentor
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:
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.
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:
@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!
Liked by Colleen Young, Connect Director, John, Volunteer Mentor
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?
Liked by John, Volunteer Mentor
@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.
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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?
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.
Hoping you find something that works for you too…
Liked by Teresa, Volunteer Mentor
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.
Liked by John, Volunteer Mentor, Teresa, Volunteer Mentor, Parus
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.
That is very interesting JIm….I am seeing a rheumatologist in a couple of weeks to see if she can help with the neuropathy. I will see what she says about Axathioprine.
@jimhd – did you mean Azathioprine? I wasn’t able to find any drug information for the Axothioprine but did for the Azathioprine. It will be interesting to see if it helps with the horrible pain that a lot of people with neuropathy have.
When I was first diagnosed with small fiber peripheral neuropathy the Mayo neurologist told me it will progressively get worse and to just watch it and let them know if it starts affecting other things. A little more discussion with him I found out other things were the autonomic nervous system and eventually an organ failure (if I’m remember everything correctly). I was bummed out because the PN was already just below both knees and I was worried about losing the ability to drive myself. I have no real pain with my PN, only the tingling and numbness and really cold feet in the winter time. I left depressed because he told me there are no drugs, supplements, topical creams that will reduce or eliminate the numbnessjimhd When I was first diagnosed with small fiber peripheral neuropathy the Mayo neurologist told me it will progressively get worse and to just watch it and let them know if it starts affecting other things. A little more discussion with him I found out other things were the autonomic nervous system and eventually an organ failure (if I’m remember everything correctly). I was bummed out because the PN was already just below both knees and I was worried about losing the ability to drive myself. I have no real pain with my PN, only the tingling and numbness and really cold feet in the winter time. I left depressed because he told me there are no drugs, supplements, topical creams that will reduce or eliminate the numbness. This is also what an 80 year old neurologist still in practice and working on research at the University of Minnesota told us at a Minnesota Neuropathy Association meeting. He said anyone that lives long enough will get neuropathy – nerves die as we age.
Anyway I’m a believer in supplements as I’ve found what works for me and at a minimum has stopped the progression on my SFPN. My neuropathy has went from just below the knees to just above the ankles. Unfortunately it hasn’t gotten any better since the initial reversal but I’m OK with it since it’s not getting worse like I was told it would.
There is a lot of research going into nerve repair/regeneration so I’m hopeful for all my younger PN friends.
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Hi Gary (@gman007), CoQ10 and turmeric are two of my favorite supplements. Would you happen to know what a therapeutic dose of CoQ10 is? I was taking 100 mg capsules once daily but recently went to a 300 mg capsule once daily. I know it’s good for your heart and I also have high blood pressure for which I’m currently taking medication.
Liked by Teresa, Volunteer Mentor, Parus
Sorry for the misspelling. It is azathioprine. My neurologist prescribed it a couple of months ago. He said that it’s to slow the progression of neuropathy. It doesn’t treat the symptoms, so I won’t feel it working.
I suppose you’ve tried lidocaine cream and arnica cream/tea, John. I use the lidocaine cream to numb my feet at bedtime so I can get to sleep. Sometimes I use it during the day when my feet really hurt. I wonder if it would help the non pain symptoms you have.
I’ve tried the lidocaine cream but it doesn’t help with the numbness in the feet. I haven’t tried the arnica cream/tea but I’ve yet to find any external creams or topicals that work for numbness. I wish it would though. I have been thinking about near infrared heat lamps to use at night before bed to warm them up. Have been looking into the healing benefit but it’s a little spendy. SaunaSpace has a single light that is close to being affordable …if it works. https://saunaspace.com/shop/near-infrared-single-light-panel/.
Liked by Teresa, Volunteer Mentor, thankful
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