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  • Small Fiber Neuropathy!! Help...

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    Old 10-29-2006, 09:04 AM   #1
    sianmaloney
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    Unhappy Small Fiber Neuropathy!! Help...

    Hi. I was diagnosed with the above earlier this year. It began in my feet and lower legs and is now in my hands and lower arms. I have a kidney transplant and they believe the neuropathy is due to the medication. I also have epilepsy so a lot of the treatment for it is no good for me as it effects my epilepsy. I was wondering if anybody had any other ideas. And also does anybody suffer from headaches with it. As in the last 3-4 weeks I am crippled with headaches that we cannot control. Thank you for listening to a moaner!!!

    Last edited by sianmaloney; 10-29-2006 at 09:11 AM.

     
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    Old 10-30-2006, 05:13 PM   #2
    SarahNina
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    Re: Small Fiber Neuropathy!! Help...

    I also have small fiber neuropathy. I'm sorry to hear that most of the medications aren't good for you because of your other medical conditions.

    Do you use ice to dull your symptoms? I keep several ice packs in my freezer and when the burning kicks in I put the ice on the area. It only helps while the pack is on, but I'm glad to have some relief.

    Also, I've found that I'm significantly better when I'm cool. I wear sandals (sometimes socks too) to work to keep my feet cool. It helps a lot. I know that people with neuropathy can very different symptoms, but maybe since we both have small fiber neuropathy we will respond to some things in similar ways.

    You might also want to check out alpha-lipoic acid. I suggested it after much research and my neurologist thinks it's a very good idea. I take 300 mg 3 times a day. I have recently improved (not sure if relief is just from neurontin) and think there's a good chance the ALA had something to do with it.

    I know this probably was not very helpful. I wanted to respond. I hope that you get some relief soon.

     
    Old 11-07-2006, 07:28 AM   #3
    sianmaloney
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    Re: Small Fiber Neuropathy!! Help...

    Thank you so much for replying. I suffer from pain more so than burning. I live in Ireland so we don't have a huge problem with hot weather!!! Does the ALA help with pain? I do find though when I wear shoes that cover my feet and walk too much the soles of my feet burn like hell. Thankfully I am not a shopaholic!!

     
    Old 11-07-2006, 06:42 PM   #4
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    Re: Small Fiber Neuropathy!! Help...

    Can you buy "Crocs" shoes there? They only weigh 6 ounces, and are like walking on air. I can no longer walk barefoot, or wear any shoe that covers my feet even barely tight. These were a Godsend for me. I also take Lyrica for the pain, and it works really well, but packs on the pounds. Sorry I can't help with the headaches.
    Good Luck,
    Jill

     
    Old 11-08-2006, 03:44 PM   #5
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    Re: Small Fiber Neuropathy!! Help...

    On that note, I've found that Keene sandals are pretty good. The kind I have has a closed toe, so I don't feel too silly wearing with socks or year-round.

    How are you in humid weather (even rain)?

     
    Old 11-08-2006, 03:48 PM   #6
    SarahNina
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    Re: Small Fiber Neuropathy!! Help...

    about the ALA

    Since taking the ALA I do think I'm a lot better, but I also started neurontin at the same time. There are so many variables.

    But yes, the idea with ALA is that it is supposed to give a reduction in pain.

    You can check out the mayo clinic's website for further information. There have been solid clinical studies with it in Europe with very promising results.

     
    Old 11-17-2006, 02:56 AM   #7
    sianmaloney
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    Re: Small Fiber Neuropathy!! Help...

    The burning really isn't that bad. It is the pain. Neurontin sends my epilepsy bananas! I am on 75mg of amitryptiline for pain. But I don't really think that does anything. They were talking of doing a spinal implant. But I have heart problems which complicate that. I was wondering if the headaches at the moment as well are a manifestation of the SFN. I am just a crock!!! And only 35!

     
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