Suffering from idiopathic neuropathy!

Owl
Owl Posts: 346 ✭✭✭

I have non diabetic neuropathy originating in my torso and extending down my legs to my feet. Because it’s so intrusive I cannot sit down during the day and it either keeps me from falling asleep at night or wakes me up after an hour or so. I’m taking gabapentin but I’m aware that gabapentin also causes neuropathy and it is certainly getting worse.

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Comments

  • shllnzl
    shllnzl Posts: 1,820 ✭✭✭✭✭

    @Owl I'm sorry to hear of your difficulties. I have no knowledge to offer. However, I can speak from personal experience that exercising helped me remove most of my body pains.

    Please keep moving if you can in lieu of sitting down. Maybe you will get some relief.

  • Monek Marie
    Monek Marie Posts: 3,539 ✭✭✭✭✭

    My mother and brothers started taking a very high dose of vitamin D3 (5000 units, mg?s) and it has helped immensely. They have all suffer terribly. Moms is basically gone and my brothers much beter

  • Owl
    Owl Posts: 346 ✭✭✭

    Shllnzl, I could not agree more, movement is what makes me able to cope. I garden and run the farm and I’m working on getting back in the gym but I’ve had to put that on hold while I have dry needling for my back and neck.


    Denise, I have done the high dose vitamin D in the past, I will try it again. Thanks!

  • stephanie447
    stephanie447 Posts: 404 ✭✭✭

    5,000 IUs daily are slightly higher than the upper end of safe (4,000 IUs) so that should be fine, but be very careful and don't overdo it. Too much Vitamin D can cause neuropathy (source, one of my neurologists). Too much B6 can cause nerve damage too.

    I have neuropathy and I highly recommend getting a near infrared/red LED light pad...seems to have helped me.

    Reduce inflammation (take turmeric and other anti-inflammatories). Gotu kola is a good to help nerves. Some people get help with ALA or RLA (alpa-lipoic acid) but you need to start on a low dose and work up. I have yet to try it.

    Try to figure out why you have the neuropathy. Get checked for food sensitivities, viruses, and also mold exposure. Likely your neurologist won't help much so get an integrative doctor.

    Certain antibiotics can cause neuropathy, notably the fluorquinolone family. This includes Cipro, Levaquin, and Avalox. Always tell your doctors that you are allergic to fluoroquinolones and don't ever take them ever again.

  • Melissa Burford
    Melissa Burford Posts: 69 ✭✭✭

    I've used a vibrating massager (mine came from a stuffed animal that would vibrate when you hugged it) to help relieve my neuropathy.

  • Owl
    Owl Posts: 346 ✭✭✭

    Stephanie, you make an excellent point about the antibiotics. They are contraindicated in Ehlers Danlos Syndrome but I wouldn’t take them for anything less than life or death for anyone. I know too many people who have had terrible things happen after taking them and many of them have no underlying issues.

    Another excellent point is the dietary component. I did an elimination diet and realized that eggs increase the symptoms. I could probably live off eggs because I love them so much but I have to make them a rare treat instead of a dietary staple.

  • Torey
    Torey Posts: 5,679 admin

    There are a few herbs that will help with nerve pain. Skullcap is a good one. Valerian is sedating to the nervous system. It might make it easier to sleep as well. Maybe a combination using both skullcap and valerian. Cramp bark might help if you are experiencing cramping along the nerves. A salve of St. John's Wort should help calm the nerve pain from an external perspective. You could try taking it internally as well. Use caution if you suffer from depression, though.

    Some other supplements that you could add in if you think you might be low. Fish oil. Zinc helps will cellular repair.

    Avoid artificial sweeteners. Aspartame has been linked to degenerative nervous system conditions.

    None of these things alone will cure your condition. Homeopathy would be of assistance here, to get to the root of the matter. But there are 322 remedies listed for neuralgic pain in the lower limbs, so it will take an experienced homeopath to sift through the list to find the one that is appropriate for you.

  • Owl
    Owl Posts: 346 ✭✭✭

    I had a c-section and then an inguinal hernia repaired about 20 years before the neuropathy started. I have also had several back surgeries but none recent.

  • Owl
    Owl Posts: 346 ✭✭✭

    Monica, I will look into it. The last time I tried massage therapy everyone that tried, except one, bruised the heck out of me and I have been very reluctant to try again. I did have a series of MRIs that (supposedly) showed no indication of scar tissue or any other explanation for my weirdness. I tried to get my neurosurgeon to look at everything and he said he did but that there was nothing there. I know that there is because the beasties are still trapped inside me and constantly trying to crew their way out!

  • stephanie447
    stephanie447 Posts: 404 ✭✭✭

    So my latest focus in healing neuropathy is to work on improving circulation. Lifestyle-wise, this means some mild exercise like walking 30 minutes per day and not being too sedentary. I noticed recently when I took four days off of work and had a computer break (spent my time cleaning and decorating for Christmas), my symptoms improved.

    I'm also starting a separate topic on herbs for circulation.

  • frogvalley
    frogvalley Posts: 675 ✭✭✭✭

    I used the homeopathic remedy Graphites for neuropathy.

  • Owl
    Owl Posts: 346 ✭✭✭

    I’m not familiar with the use of graphites, could you elaborate please? I have a very atypical neuropathy that doesn’t come from having diabetes but it definitely progressive so I’m always looking for anything that might help.

  • Torey
    Torey Posts: 5,679 admin

    @Owl In one of the SWSBM classes that Judson has been giving us notes on, it is mentioned that a tincture of Cow Parsnip seeds (Heracleum lanatum) can be quite effective if applied directly along the affected nerve line. I haven't tried this but I harvested seed this summer and made a tincture.

    Graphites is a remedy used for neuropathy. It is one of the 322 remedies I mentioned above. It is a fairly common remedy so you should be able to find it in a health food store. Another remedy that might be a good choice as well is Gnaphalium. It might not be so easy to find in your local stores but it is available on Amazon. That being said, homeopathic remedies are usually given on a totality of symptoms so giving something just for the neuropathy can be difficult to get a good match. When taking a remedy, you should know within the first couple of doses if it is going to help.

  • Owl
    Owl Posts: 346 ✭✭✭

    Could you please tell me where to find the list containing those 322 remedies? I would give much to get off the gabapentin (that also causes neuropathy) and get my whole life back!

  • Torey
    Torey Posts: 5,679 admin

    @Owl I have a professional repertory program which is a little pricey if you aren't a practitioner and making an income to pay for it. But there is an online repertory that is free to use through ABC homeopathy. It doesn't list all the remedies that my program does but it may help you to narrow down your choices. This is a direct link to their neuropathy page. https://abchomeopathy.com/c.php/177 All you have to do is tick off all the boxes that relate to your symptoms and it will give you a more focused list to choose from. There are also links to forum discussion that deal specifically with neuropathy. There may be some suggestions from people who have used the remedies with success.

    An appointment with good homeopath would be able to offer more assistance than I can in a forum setting. But I hope the link will give you a direction to go in.

  • frogvalley
    frogvalley Posts: 675 ✭✭✭✭

    @Owl I experience a severe nerve issue a few years ago. For some unknown reason, we went to brunch and I had an organic hoppy beer. So odd as I have only "done" brunch twice in my life while staying in a hotel, I HATE beer and this was at 10am. Two days later I realized that the pain had subsided, but was just now returning. It took some detective work to figure out that it was beer that had stopped the pain. I looked up the ingredients and found that hops are one of the nervines the plant kingdom has for us. Since the beer worked once, I found another organic hoppy beer at the grocery store and took a swig about every 6 hours to keep the pain at bay. It took about a month before the pain was gone entirely.

    @torey is spot on with her recommendations. I also recommend looking up nervines to see what resonates with you and then trying a little something if you chose not to work with a medical professional. If you are new to herbs, homeopathy, or other alternative medicinal paths, it is important to work with someone who can support you and understands their area of expertise and the limitations.

  • Owl
    Owl Posts: 346 ✭✭✭

    That’s absolutely incredible! I have been on gabapentin for 2 years and I seriously doubt I will ever see that kind of remission of symptoms but I would be thrilled with enough that I can just sleep at night. I have been exploring the website Torey mentioned in the little bit of spare time I’ve had lately but I will definitely be spending a lot more time there after Christmas.

    I do work with a DO but not a naturopath, I guess that’s going to be my next step since there is no future for me with conventional medicine as it relates to the neuropathy.

  • Sharie
    Sharie Posts: 276 ✭✭✭

    You need to increase circulation so the nutrients you need to heal can get to the proper location. Magnetic or infrared, micro-current, laser, other light therapies, etc. Basically energy medicine.

  • Owl
    Owl Posts: 346 ✭✭✭

    Unfortunately, my neuropathy is not related to diabetes or lack of circulation. I was getting in the range with my weight up and my A1c nearing diabetic levels but I got out of the bed and started eating a whole foods, plant based diet and intermittent fasting and lost 70 pounds and got that under control. My neuropathy started in my torso and, over time, spread down my legs. When I was practically bed bound it was not there but not long after I started staying out of the bed all day, it started, and over the course of a few years spread gradually downward.

  • frogvalley
    frogvalley Posts: 675 ✭✭✭✭

    @Owl Just don't ever give up! Traditional medicine has been quick to call me out of the game too many times, however I have been blessed by God each time to have found a way back. Some times it has taken decades to find the answer, but I found it. Chin up!

  • Owl
    Owl Posts: 346 ✭✭✭

    Amen! It was God who got me out of the bed/wheelchair and restored my life. My memories of that time are mostly gone but my brain is back online and I am beyond blessed! I will never give up! Sometimes, late at night, when the neuropathy is screaming so bad that I can’t concentrate on anything else I will (very rarely thanks be to God) briefly despair but I will never consider my life as anything but blessed. I will briefly dwell on the facts that my body will continue to deteriorate due to the collagen defect (Ehlers Danlos Syndrome is a disease of aging) and the neuropathy that keeps increasing and be terrified of the future but then I remember saints who have suffered from complete paralysis from the neck down and still made a huge difference in the world around them. I just work at staying very busy ministering to the people in my little world and living this gift called life to the fullest every day. The future is out of my hands but the moments are mine to choose to fill with joy or despair, I choose joy.