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Need advice on peripheral neuropathy

Discussion in 'Adults with Type 1' started by Lindy1213, Apr 5, 2011.

  1. Lindy1213

    Lindy1213 New Member

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    Hi all,

    I am new to the board. My husband was diagnosed recently (January 2011) with Type 1. He is 28 and, before his diagnosis, a very healthy man. This has been quite a shock and adjustment for both of us.

    He has been able to get his blood sugars relatively regulated but he is suffering from pretty severe peripheral neuropathy in his feet. His endo first tried neuroton (sp?) and that was not effective nor was Cymbalta. He is now taking Lyrica. However, no matter the dosage, he is still in significant pain.

    His endo has made him an appointment with a neurologist, but we could not get in until next month.

    He hardly sleeps because he is up all night in pain (he says his feet just feel like they are burning all the time). Some days the Lyrica seems to work, but night time is always terrible- no matter how great the day has been. He has also been using the over-the-counter cream (can't remember the name) 4-5 times a day.

    I know that the pain will lessen with more time of regulated blood sugars. But I was curious if anyone has any other advice, assistance, ideas that work. I feel so bad that I cannot do anything else to ease the pain and he is really struggling right now- really any words of advice or help is welcomed!

    Thanks!
     
  2. JeremysDad

    JeremysDad Approved members

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    Wow, I am so sorry about your husband. 28 is quite old to be diagnosed although I have a neighbor who was diagnosed at 50. I wish I could help you or give you advice but I cannot. Hopefully there are others in this group that can. If this is any consolation, you have found the best resource for anything T1 and the group members who frequent this board are compassionate and caring. If you do not get a reply to your post, please post again!!

    Good luck to you and your husband.
     
  3. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

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    28 is not that old to be diagnosed with type 1 diabetes but it is old for this board. Also, having painful neuropathy at diagnosis suggests an unusually long onset for type 1. So I'd recommend tudiabetes as a better place to go for suggestions. There's a neuropathy group on there and I've just been getting emails from group members about treatments. Here is a link: tudiabetes.org/group/neuropathy
    Although I have some neuropathy, mine doesn't hurt so I have no relevant experience.
     
  4. JeremysDad

    JeremysDad Approved members

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    I was under the impression that the average age for T1 diagnosis is 12.
     
  5. TheFormerLantusFiend

    TheFormerLantusFiend Approved members

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    Average age at diagnosis varies a lot by time period and region; the average age at diagnosis appears to be dropping. Elliot Joslin recorded an average age at diagnosis of 19. Most of the European countries who collect data on all type 1 diagnoses have an average age at diagnosis of around 14.

    But the average is not the point here- the point is more the distribution. And the distribution says that on the older half of the diagnosis group, age at diagnosis is pretty spread out. A diagnosis of type 1 diabetes at 28 is above average- but it's definitely not above the 90th percentile of age at diagnosis for type 1 diabetes.
     
  6. sarahspins

    sarahspins Approved members

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    I'm not sure how... 2/3 of new T1 cases are in adults...
     
  7. JeremysDad

    JeremysDad Approved members

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    Thanks for that clarification. I know I read it somewhere, I cannot remember where. I think you are right though. A lot of posters to this board are parents with young kids; some with infants.
     
  8. diabeticmeg

    diabeticmeg Approved members

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    I read a stat from JDRF that said 50% of type 1s are diagnosed after the age of 18.
    People like me (dx at age 25) come here and contact JDRF cuz its hard to find support elsewhere :(
     
  9. Wendy12571

    Wendy12571 Approved members

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    Okay sorry to post here, but I have a few questions. He was just recently diagnosed. I don't have peripheral neruropathy, but do have "nerve" pain. I would wonder if he wasn't on enough neurotonin. I would actually encourage you to maybe have him see a pain management doctor. Part of the problem is they all jump to conclusions. I am not totally sold on the diagnosis. There are other meds that also help pain and sleep. Elavil is one. I was non everyone of them so trying to remember all them. I believe Wellbutrin was another one tried. I forget the name of the very first one. It began with a Z I think.
    Wendy
     
  10. Lindy1213

    Lindy1213 New Member

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    Thank you all for your replies. I will try the tudiabetes board as well.

    @Wendy - thank you for your insight. He was on neurotin for two weeks and was up to the maximum dosage the doctor would allow (can't remember what it was). He stopped taking the Cymbalta because it had severe side effects for him (making him extremely depressed, which I know can happen sometimes). He is up to the max dosage for Lyrica. So, we will see how it works.

    For his diagnosis, we are going to see a neurologist in early May, so they will be able to finalize the diagnosis. If that does not help, I will get in touch with a pain management doctor. Great recommendation- any other person who might be able to help with the pain is much appreciated!

    Thank you all for your help!
     
  11. JeremysDad

    JeremysDad Approved members

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    Let us know how he does. Keep us posted.
     
  12. kiwiliz

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    Lindy - so sorry to hear you are having so much trouble. Don't hesitate to post here. There are plenty of people here to reply - and lots of adults and children with diabetes.

    With regard to the long term "getting blood sugar levels under control" have you thought about a lower carb diet? It seems to be ok for most adults. You could ask your GP if it would be suitable. Do let us know how you both get on. You have our support here as well.:)
     
  13. Connie(BC)Type 1

    Connie(BC)Type 1 Approved members

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    I take 1600 mg of Neurontin a day, while it's not a miracle drug it does take the edge off. I find with neuropathy, it's always there, and it's a lot of mind over matter. When I have a flare up of pain, I deal with it till I get used to it again, sometimes it takes an extra Neurontin, sometimes it's a waiting game
     
  14. Renegade

    Renegade New Member

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    Lindy,

    I just came across this forum today, so I hope you check back periodically since it's been so long since your original post.
    I have been type 1 since 1974. I started getting mild neuropathy about 6 years ago. Some days (nights, actually) are worse than others, but mostly it's not been really painful to deal with.
    I have always felt disinclined to use any strong drugs that might have side effects or unintended consequences, so I can't speak about the prescription meds that others use to control the pain, but here's what's worked for me:

    1. Lower the BG. There often (but not always) seems to be some correlation between high BG readings and a flare up of foot pain. Since your husband is recently diagnosed, I'm guessing he's still in the learning curve (aren't we all?) on this one. Without writing a book, eating more protein and fewer carbs is a good start. It's much easier to match up the insulin needed to cover small carb intake vs. a lot.
    My BG control has been greatly enhanced by my Dexcom CGM. I could write a book on this too, but even more than a pump, I think a CGM is the most important piece of equipment a Type 1 can have.

    2. Anodyne Therapy. You can google this. It uses infrared light applied directly to the feet to help increase blood flow, which can reduce the pain and possibly improve nerve health. There are scientific studies showing its effectiveness in treating neuropathy pain I initially got treatments from a Physical therapist, and then bought a home version on line. I use it regularly, and though I've read that it doesn't work for some people, I don't understand why it isn't more widely known and prescribed.

    3. Acupuncture and herbs. Some people get freaked out about the needles, which for a diabetic is hilarious. Acupuncture can really help, and not just neuropathy. Like doctors, chiropractors, etc, there are good acupuncturists, and some not so good. First choice would be a personal recommendation from someone you know. Second choice is to search/research on line. Some acupuncturists are also knowledgeable about herbs, some are not. Some people respond better to herbal treatment. Both are worth looking into.

    4. Metanx. This is a prescription form of vitamin B that is supposed to have greater bioavailability than standard B vitamins. My endo told me about it and I took it for a while but couldn't say whether it helped or not. You can google this one too.<br>

    5. Dumb question, I know, but your husband doesn't smoke does he? Some people still do, and its probably the worst thing possible for a diabetic's feet (rest of body too).

    One last thing: If your husband had some foot numbness BEFORE being diagnosed, then getting his BG under control could lead to a big increase in foot pain. This level of pain should be temporary as feeling starts to come back into his feet.

    Hope you'll post again and let us know how its going.
     
    Last edited: May 26, 2011
  15. Tiana

    Tiana Approved members

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    My heart goes out to anyone with peripheral neuropathy. That pain is excruciating. I'm happy your husband has an upcoming appointment with the specialists. The only silver lining is that he does feel something, sometimes people don't feel anything but numbness.
     
    Last edited: Aug 8, 2011
  16. sunflowr72

    sunflowr72 Approved members

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    I've had peripheral neuropathy for about 8 years now, in both of my lower legs, and now it's moved into one of my thighs. My doctor prescribed Gabapentin, which worked for awhile but I was unable to take it after awhile because of stomach pains when I took it. My doctor finally resorted to narcotics because I was in so much pain.

    I started off on Oxycontin, but got to the point in that it wasn't covering the pain anymore. Also, I was noticing signs of addiction in my behavior, so I had my doctor take me off of it. Currently I am on morphine, and it's working a lot better. I've been on it for about 5 years now. I am NOT addicted to it, and my doctor keeps me on a very short leash with it, and I am proud to say I have never, not even once, ever abused it or taken even one pill more than I am prescribed. Unfortunately, I also sometimes actually forget to take it on time, or miss a dose, then I'm in big trouble when the pain sets in. I understand what your husband is going through. The pain is bad for me, too, and sometimes keeps me awake all night.

    I DO NOT recommend narcotics for everyone. It had worked for me, but only because my doctor and I tried other options (not mentioned here), and they didn't work. I am very conscious of my body, and I can judge whether I'm having addictive behaviors with it. Others may not be so fortunate, and get into something completely different in their own situation. But there are things out there that do work when you've exhausted other options. Try the natural route first, before getting into the heavy-duty pain meds. It's worth it.

    The only other thing I found that did work, at least temporarily, is something for pregnant women. There are stores that cater to pregnant women, and most of them carry some type of "sore leg relief" gel or creams. I find these work well, with the gel being best because of the cooling effect. They only work for about an hour, but sometimes that's enough to take the edge off so that he can have at least some relief from the pain.

    I know the pain takes a lot out of you. Keep your spirits up. Others know what you're going through, you're not alone. There are things out there that will work for you. You just have to find the right one.
     
  17. Helenmomofsporty13yearold

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  18. sunflowr72

    sunflowr72 Approved members

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    If I were in your shoes, I would give acupuncture a try

    Thank you for the advice. I will definitely look into it. I hate always having to take pills. I'd be happy to be off of them.
     

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