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Help in dealing with neuropathy

Discussion in 'Diabetes Complications' started by Junior_Jones, Apr 1, 2015.

  1. Spiker

    Spiker Type 1 · Well-Known Member

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  2. Brunneria

    Brunneria Other · Moderator
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    Yes, get well soonish.

    I will entertain the Spikey One til you get back.

    One good thing is that Barcelona is a lovely place to recouperate... Slowly. ;)
     
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  3. LucySW

    LucySW Type 1 · Well-Known Member

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    A batcave in Barcelona, now, *there's* a thought ...
     
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  4. Lexie_26

    Lexie_26 Type 1 · Member

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    I tried amitriptline, it made me hallucinate, gabapentine didn't help and pregabaline was the same. I literally don't sleep during the night even with my sugars being around 4-7. I'm taking co dydramol as well as paracetamol just to ease with the pain
     
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  5. VixyA86

    VixyA86 · Member

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    I agree! I have had mild neuropathy for several years, never caused me any problems but after recently tightening up control (over the last 3 months), have found that it's become a lot worse :-( It's not really painful just really uncomfortable; it's like constant partial numbness in my left foot (like I've sat on it funny for too long!), which is most noticable when I get up in the morning. It's just a really uncomfortable sensation and lasts all day. Am wondering if it could be anything to do with circulation as well but not sure. Really frustrating and disheartening so I really sympathise.
     
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  6. Brunneria

    Brunneria Other · Moderator
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    I have read somewhere (and I am very sorry that I cannot recall where!) that sometimes the nerves are more painful as they regrow. But I'm afraid I can't point you at a reference for that idea.
     
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  7. Lexie_26

    Lexie_26 Type 1 · Member

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    @Brunneria how true is that? My doctor told me that I will never get the feeling back in my feet
    It made me cry for about 2 weeks knowing that after everything I've done, the damage was irreversible
     
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  8. Clivethedrive

    Clivethedrive Type 2 · Well-Known Member

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    Yes its a fact !they do regrow and are painful as they do , i know have been through it!
     
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  9. LucySW

    LucySW Type 1 · Well-Known Member

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    Lexie, I know absolutely nothing about this myself, but Dr Bernstein says that damaged nerves will regrow if blood sugars are kept to true normal levels. See his book, or his videos on YouTube as Dr Bernstein's University.

    This happened to him - most of his very severe damage repaired itself - and he says this is what happens with his patients.

    That's why he puts such effort into getting the BG down, and tailoring the lo-carb diet to fit.

    I don't think it's a promise, but it's bound to be worth a try.
     
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    #29 LucySW, Apr 7, 2015 at 9:00 AM
    Last edited by a moderator: Apr 7, 2015
  10. Lexie_26

    Lexie_26 Type 1 · Member

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    Thank you @LucySW I feel optimistic now
    Hopefully with my pump my sugars can stay in range now
    I haven't slept due to the pain that's now easing off so I'm going bed now
     
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  11. LucySW

    LucySW Type 1 · Well-Known Member

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    #31 LucySW, Apr 7, 2015 at 9:09 AM
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  12. trevbee

    trevbee Type 1 · Newbie

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    ive been typ 1 diabetic for nearly 20 years had loads of ups and downs i got neuropathy in my feet and legs tryed lots of pills but settled with combo of duloxetine pregabalin and morphine like most of you causes great pain cannot describe it for those who hav,nt had it my sugars have never been fully underconrol have tried for so many years,but as im going to be a grandad for the first time feel i should try again to control my sugars having tryed so my ways to control my neuropathy i think the best way is to control your blood sugars first of all change of life style is needed i think wishing the very best to those still suffering neuropathy
     
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  13. Winnie53

    Winnie53 Type 2 · Well-Known Member

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    Omnipod, thank you for these posts. They are both hopeful and inspiring. I'm going to save it (and some of the posts that followed), then print it so I can make copies as needed to share with diabetics who are suffering from neuropathy.

    What you've shared is an incredible gift, worth reading again along with the other posts supporting your experience...

    I looked up the book - (more on that in a minute) - that led to you taking Alpha Lipoic Acid, B12, C, D, E, Tripple Omega and CoQ10 AND to beginning the Low Carbohydrate, High Fat diet - (find ongoing support for this diet here... ( http://www.diabetes.co.uk/forum/category/low-carb-diet-forum.18/ ).

    I find it amazing that you were in that much pain and yet your neuropathy remitted within 1 week. I also find it reassuring that you're able to stay in remission by keeping your blood glucose under 7.7 mmol/L (138.6 mg/dL) and by continuing to take only the Alpha Lipioic Acid and B12.

    gemma6549, thank you for adding your experience. It serves as an important reminder that the body often needs time in addition to changing our diet and taking nutritional supplements: "When my neuropathy was bad I started taking Thiamine, this is a very high dose of Vitamin B12 and this really made a difference. Even though my bloods showed my B12 levels to be fine, it still made a significant difference to the pain. I maintained good control and the neuropathy resolved itself after 12 months. Sometimes the body just needs time to repair itself." [gemma6549 later corrected herself and confirmed that it was actually benfotiamine, a form of vitamin B1 that she was taking].

    Brunneria, Clivethedrive, and LucySW, thanks also for your posts:

    Bruneneria: "I have read somewhere (and I am very sorry that I cannot recall where!) that sometimes the nerves are more painful as they regrow. But I'm afraid I can't point you at a reference for that idea."

    Clivethedrive: "Yes it's a fact! They do regrow and are painful as they do. I know, have been through it!"

    LucySW: "I know absolutely nothing about this myself, but Dr Bernstein says that damaged nerves will regrow if blood sugars are kept to true normal levels. See his book, or his videos on YouTube as Dr Bernstein's University. This happened to him - most of his very severe damage repaired itself - and he says this is what happens with his patients. That's why he puts such effort into getting the BG down, and tailoring the lo-carb diet to fit. I don't think it's a promise, but it's bound to be worth a try."

    In her next post, LucySW continues, "Here is the Bernstein book, which is very inexpensive on Kindle http://www.amazon.co.uk/gp/aw/d/031...s+solution&dpPl=1&dpID=51NMUWSvsEL&ref=plSrch And here's the Diabetes University playlist: https://m.youtube.com/playlist?list=PLs_TA02I6IvV6-1s2pL4BPhvMo0Ck_lcY His program involves limiting carbs to 30 grams a day. It doesn't suit everyone, but it suits some very well. Worth a read? Reliable; not a quack."

    When I was told my blood glucose levels were out of control in February of this year, his was first book I read. It dramatically changed the course of my life. Here's Dr. Bernstein's story... http://en.wikipedia.org/wiki/Richard_K._Bernstein And here's the story of how he reversed his diabetic complications... http://www.diabetes-book.com/bernstein-life-with-diabetes/

    I was diagnosed with my first chronic health condition in 1990, my second in 1999, my third in 2004, all three inherited...lucky me, and I'm now battling my first complication, heart disease. What I've learned:

    Use of medication is helpful, but choose carefully. Understand that real change, and if we're fortunate, healing too is possible with diet and nutritional supplements, but again, choose carefully.

    The book Omnipod referred to, The Antioxidant Miracle, was written by Leslie Packer, Ph.D. and a professional writer in 1999. Interestingly, it has only 39 reviews, http://www.amazon.com/Antioxidant-Miracle-Lipoic-Pycnogenol-Vitamins/dp/0471353116/ref=sr_1_1?ie=UTF8&qid=1429549720&sr=8-1&keywords='The+antioxidant+Miracle' , which is not unusual for this type of book. Of these reviews, it had one 1 star, one 2 star, three 3 star, four 4 star, and thirty 5 star reviews. Here's the "most helpful critical review":

    "Three Stars - The Anitoxidant Miracle, January 25, 2000: Everything concerning the mechanisms of the antioxidants that are shown in this book is just superb and correct, and also the principle explaining the team work of the antioxidants together. I don't agree at all with the author about the doses that he recommends in the book, because my experience as an orthomolecularist convinced me that higher doses of the antioxidants should be taken, especially in the cases of degenerative-oxidative-diseases (such as parkinson, altzheimer, huntington, multiple sclerosis, etc...). It is very much worth reading this book, and is very informative in the sense of molecular-chemistry, and the molecular way of the antioxidants, but again, the doses should be much higher."

    After reading a few reviews, I decided to Google Dr. Packer. In 2012, he was the International Advisory Board and Keynote Speaker of the Society For Free Radical Reseach International Trevor Slater Award Lecture, 16th Biennial Meeting, Imperial College London, 6-9 September 2012, United Kingdom. Here's his bio... http://www.sfrrimeeting.org/bio-packer.html

    I think this man is worth listening to. I'm going to read his book.

    Link to this topic and posts: http://www.diabetes.co.uk/forum/threads/help-in-dealing-with-neuropathy.74653/page-2
     
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    #33 Winnie53, Apr 20, 2015 at 8:03 PM
    Last edited by a moderator: Jun 27, 2016
  14. gemma6549

    gemma6549 · Guest


    I had exactly the same combination of duloxetine, pregabalin and morphine. I was pretty much sedated for a year otherwise who knows what I would've done, cannot begin to describe the pain!

    All better now the nerves have healed and control remained stable.
     
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  15. Clivethedrive

    Clivethedrive Type 2 · Well-Known Member

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    Well what a post nicely compiled and all worth it thank you Winnie53 ::))
     
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  16. Omnipod

    Omnipod Type 1 · Well-Known Member

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    Winnie

    Thank you. I hope that my experience has helped others.

    It is true.... many times neuropathy pain does get worse when the nerves start re growing.

    I am not completely pain free. i still feel a slight heat and burn - only when my sugar levels are higher than they should be..

    Everyday that passes and my sugar is where it should be AND STABLE, I am getting better. Its no good having low BG but an eratic pattern. My aim thesedays is to keep my BG pattern nice and stable and not like it used to be.....peaks and troughs.

    using the Freestyle Libre has also changed my life and made my control easier.

    I hope everyone reading this thread has a similar experience because neuropathy is terrible.
     
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  17. Omnipod

    Omnipod Type 1 · Well-Known Member

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    I thought Id share this:

    I hope this story can give hope to those who suffer with complications:
    (This is not about me. I found this online and thought Id share)

    Are you a scientific anomaly like me? Have you or someone you know reversed the complications associated with diabetes? Did you suffer microvascular and macrovascular damage during the “growing pains” of coming to terms with having no choice but to live your life with diabetes? Then, did you turn around and find love and hope, which made you change your life? And after changing it, did you find after several years that you were healing the damage that you had incurred by your own misguided hand?

    Well, I did and I am looking for others! I want to encourage people to share their stories in the hope that we can generate sufficient anecdotal information that will demonstrate sufficient cause for a rigorous study to scientifically prove that we can reverse complications associated with diabetes!

    I am proud to say that, despite my early years of virtually ignoring my diabetes and sustaining significant microvascular and macrovascular damage, thanks to an improved lifestyle over the past years I am seeing tremendous improvement of the neuropathy in my hands and feet, the retinopathy in my eyes and the nephrology of my kidneys. I’ll say it myself: Wow!

    I’ll share some of my story and hope that others will identify with and show me that I am, indeed, not an anomaly.

    Headed for an Early Death

    I was diagnosed with type 1 diabetes nearly 30 years ago when I was eight. The reasons I chose the paths I did in taking and not taking care of myself, my disease and my life were as diverse and complicated as the causes. A defining moment for me was after awakening from a three-day ketoacidodic coma and hearing the doctors tell me and my parents that I would die by age 40 and by that time I would be blind, with an amputation and quite possibly on dialysis. Needless to say, I did not learn how to live, let alone live well with diabetes. Diabetes was as an intruder in my life and I vehemently despised being destined to such a short, disease-riddled life. So, I did what any 8 year old would do, I rebelled.

    The rebellion lasted 20 years. My logic was simple: Most people seek out and do things that are good for them because they want to live long and healthy lives. But since I was going to die a young, horrible death anyway, I chose to search for things that were bad for me. I did them with gusto. Over the years, I picked up every thing from my first greatest taboo love, sugar, to filtered Camel cigarettes to my greatest, most agonizing nemesis, alcohol. Those vices all seemed par for my abbreviated course.

    So, the first 20 years of my life with diabetes were spent acting as if I did not have it. I didn’t tell anyone I had it and I never, ever talked about it. I tried to keep my blood sugars high enough that I would never have a low, and high enough to never have to test. At the time, I saw no other reason to “test” my blood sugar except to see if I was actually experiencing another one of those scary lows. So, I always kept my blood sugar high. This made me feel even more a failure every time I tested, hence I didn’t. At one point I had an HBA1c of over 18%.

    My Turnaround Allows a Comeback

    Today, I am so happy and proud to say that these things are no longer true in my life and that I have come to embrace myself, my life and even my diabetes. I met my life partner 18 years ago and married him four years later. His unconditional love and support made wanting to live a good long life a brand-new reality. I had never wanted to live a long, good, happy life. I knew it was impossible, and yet now I had found hope.

    I began to change, slowly. I had learned over the years that any action that needs to be done for the rest of my life must first fit into it. I began to look at myself, my life, and my diabetes in entirely new and nurturing ways. I had finally made a change in my life and sustained it. It felt good. Actually, it felt incredible! So, I chose to make another change, and then another. These changes soon added up and I am now happily living the benefits of my concerted efforts.

    With improving my blood sugars, blood lipids and blood pressure, came significant and considerable benefits. My kidney function went from full-blown clinical albumineria to normal function. My feet, which used to be virtual icebergs, now maintain healthy warmth. I had sustained proliferative retinopathy and in 1997 had laser surgery on my eyes to prevent me from progressing to blindness. My ophthalmologist has told me for the past consecutive six years that not only are my eyes not getting worse, they are healing and improving.

    I could hardly believe what was happening. I was healing? I went to speak with my endocrinologist, who now calls me “The Diabetes Poster Child.” I asked him how on earth I could have not known that we can reverse diabetes complications. He said, in a nutshell, because not enough people have done what I have done with my life, and since it could not be proven scientifically he could not tell his patients that it is a possibility. I responded that if no one hears it is possible, then no one will know to try.

    He continued, telling me there have been cases where they have taken, for example, a kidney from a diabetes donor and placed it in a person without diabetes only to find over time that the organ has returned to normal function. The point is with the right environment the human body can and will heal itself. Now, let’s prove it!


    Taken from:

    http://www.diabeteshealth.com/read/2008 ... 1#comments
     
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  18. tim2000s

    tim2000s Type 1 · Expert
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    Great find Omnipod, and proof that there is hope out there for those that suffer complications, if they choose to try!
     
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  19. fleurtess

    fleurtess Type 1 · Well-Known Member

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    I was put onto gabapentin and took it. It did nothing for the pain in my feet. I feel like I am walking on hot coals. My toes get very painful suddenly. It's as though they were being crushed in a vice. I saw a Locum Dr at the surgery who diagnosed neuropathy and has referred me to the hospital. He also did vit D, B12 and thyroid blood test. I wait for the results. I don't expect to be seen soon at Dumfries hospital. The waiting time there is horrendous. In the mean time I try to pretend the pain isn't there and just get on with things.
     
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  20. Winnie53

    Winnie53 Type 2 · Well-Known Member

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