Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

@pepperroot

Please explain why nog gabapentin

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I take two Gabapentin a day. It helps me a lot. I tried to go off of it and the symptoms got really worse. I went back on it. An ibuprofen at night helps. I've started taking alpha lipoic acid and MediNox Pro in addition to my other supplements. I use my TENS unit for 20 minutes on my feet, then hands. All this is helping.

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@willgranger1127

I take two Gabapentin a day. It helps me a lot. I tried to go off of it and the symptoms got really worse. I went back on it. An ibuprofen at night helps. I've started taking alpha lipoic acid and MediNox Pro in addition to my other supplements. I use my TENS unit for 20 minutes on my feet, then hands. All this is helping.

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Curious where you purchased tens

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@pepperroot

Curious where you purchased tens

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Oxiline.com
$130 Recommended by my chiro, when I said I wanted one. Numerous ones on Amazon that are less expensive. Too many choices for me, so I went with the rec. I hope that helps.

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@willgranger1127

Oxiline.com
$130 Recommended by my chiro, when I said I wanted one. Numerous ones on Amazon that are less expensive. Too many choices for me, so I went with the rec. I hope that helps.

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Thank you. New to group. I have been diagnosed with PolyNeuropathy which basically is when they don't know what is causing my symptoms. I was tested for Lime disease, lead poisoning, etc. I am currently just using OTC pain relievers. I have never heard of TENS. I will google.

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@joannebrady

Thank you. New to group. I have been diagnosed with PolyNeuropathy which basically is when they don't know what is causing my symptoms. I was tested for Lime disease, lead poisoning, etc. I am currently just using OTC pain relievers. I have never heard of TENS. I will google.

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TENS means transcutaneous electric nerve stimulation. Whew! I guess you've looked it up by now. I had to. It seems to help stimulate nerves and keep them from degenerating. I think it helps. Alpha Lipoic Acid on Amazon helps. MediNox Pro from Select Health of the Carolinas helps with increased blood flow. OPC3 from shop.com is very good for keeping red blood cells from sticking together and clumping up - much better blood flow to small vessels/veins. Cut out carbohydrates, walk as much as you can, play the air piano with your fingers in the mornings, wear compression sleeves around your ankles. Copper brand on Amazon are good as well as Kemford, which I wear at night. They aren't so compressive.
Keep on trying things that people on here talk about. Enjoy your day!
Will

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@artscaping

@user_ch98d0b5c - Well, I fit that condition...idiopathic peripheral neuropathy. Unlike John, mine comes with a ton of pain. The possible cause may be previous injuries like falling off horses and down mountains. I am happy to offer what does and does not work for me to provide some relief. Just let me know and I can send you a private message or post for all.

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I'd love to hear from you

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@usveteran

I was prescribed OMEPRAZOLE for about 1-2 years from a previous RANIDATIDE prescriprion that was said to be more potent. I developed sensitive peripheral neoropathy at the tip of one toe (second digit/next to great toe). The VA primary doctor has prescribed GABAPENTIN 600mg/day, which I take only prior to sleep. The irritation normally occurs while trying to fall asleep, but sometimes it can irritate while walking or other activity. I quit the OMEPRAZOLE when I found a doctorate's report that said "all the 'AZOLES" have been known in side affect to cause peripheral neoropathy. I found the professional report during a Google search, and I would like some assistance to find that article report again - and if there are any other citations about "the AZOLES" family of PPI's that can complicate a neoropathy condition. Many times now I am seriously considering an amputation rather than saturating my body with up to 1500mg GABAPENTIN + TYLENOL, ASPERIN, and NAPROXEN to boost - and 1 or 2 CYCLOBENZAPRENE that a friend provides in good faith. I get very dizzy from that necessary saturation, and still have to continually massage that toe for a temporary relief. Sometimes I'll end up not sleeping for 24 or 36 hours if I had eaten prior to taking the GABAPENTIN, or did not take enough dosage for an unsuspected severe attack. The GABAPENTIN works best on an empty stomach, and takes a good 2-4 hours to take effect. I have red pimple-like spotted elements all over my skin surface that may be a form of melitus diabeties that may also have pre-disposed me to the neoropathy via introductory affects of the OMEPRAZOLE. I will try to get a VA appointment to see a neoroligist some day, as my VA clinical primary does not have the necessary specialty of this neorologic condition.

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I've been on 20 mg of Omeprazole daily for over 10 years. I'm also taking 200 mg Gabapentin. Likewise, I've been concerned about the long term impacts of Omeprazole, but, every time I talk to my GI doc about it, he says the risk of esophageal cancer out weighs any side effects I might get from taking it. Not only that, but I have an autoimmune disease that causes red spots all over my body. The VA diagnosed me with peripheral neuropathy, and Restless Leg Syndrome. I've had exposure to Agent Orange, and assumed much of it came from this exposure. So your post on Omeprazole's side effects is very timely and of interest to me. So I did a ChatGpt search for this subject and came up with the following results.

Here is what ChatGpt came up with: Looking for studies on PPI's that end in 'AZOLES" which are said to have known side affect to cause peripheral neoropathy
ChatGPT said:

Proton pump inhibitors (PPIs), including medications ending in "-azole" such as omeprazole, lansoprazole, pantoprazole, rabeprazole, and esomeprazole, have been associated with neurological adverse events, including peripheral neuropathy.
Evidence Linking PPIs to Peripheral Neuropathy

A large-scale analysis of over 10 million FDA adverse event reports revealed that patients using PPIs had a significantly higher incidence of neurological adverse events compared to those using H2 receptor antagonists. Specifically, the odds ratio for peripheral neuropathy and related conditions was 8.68 (95% CI: 3.86–19.49; p < 0.0001) in the PPI group. This suggests a strong association between PPI use and various forms of neuropathy, including peripheral sensory neuropathy, neuralgia, and polyneuropathy.
PubMed+1PMC+1
PMC+1PMC+1
Case Reports Supporting the Association

Lansoprazole: A case report described a 42-year-old woman who developed burning sensations and dysesthesias in her lower limbs three months after starting lansoprazole. Nerve conduction studies confirmed axonal sensory polyneuropathy. Symptoms improved upon discontinuation of the drug.
SAGE Journals

Pantoprazole: A 70-year-old woman developed peripheral neuropathy and chronic tubulointerstitial nephritis after one year of pantoprazole use. Extensive evaluation ruled out other causes, implicating pantoprazole as the likely contributor.
PubMed+3PubMed+3PMC+3

Rabeprazole: A 28-year-old man experienced bilateral hand numbness, tremors, and muscle stiffness after starting rabeprazole. Symptoms resolved two weeks after discontinuing the medication.
SAGE Journals

Potential Mechanisms

Vitamin B12 Deficiency: PPIs can reduce stomach acidity, impairing the absorption of vitamin B12. Deficiency in B12 is known to cause peripheral neuropathy due to its role in nerve health.

Hypomagnesemia: Long-term PPI use can lead to low magnesium levels, which may contribute to neurological symptoms, including neuropathy.

Direct Neurotoxicity: Some studies suggest that PPIs may directly affect nerve cells or interfere with cellular processes essential for nerve function, though more research is needed in this area.
PMC

Contrasting Evidence

Interestingly, a study investigating the effects of omeprazole in patients undergoing chemotherapy with oxaliplatin found that omeprazole reduced the incidence of peripheral neuropathy in this specific context. In a rodent model, omeprazole ameliorated signs of neuropathy without affecting the anti-tumor efficacy of oxaliplatin. Additionally, analysis of the FDA Adverse Event Reporting System indicated a lower reporting rate of peripheral neuropathy in patients taking omeprazole alongside oxaliplatin.
MDPI+2PMC+2PubMed+2
PubMed+1PMC+1
Conclusion

While there is substantial evidence linking PPI use to peripheral neuropathy, particularly with long-term use, the relationship may be influenced by individual patient factors and specific clinical contexts. Patients on long-term PPI therapy should be monitored for neurological symptoms, and clinicians should consider the risk-benefit profile of continued PPI use in each case.

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About two years ago I started having tingling and other sensations in my right foot, so I went to a podiatrist. He said I had radiculopathy, referred pain from my back to my feet. It affected the metatarsals which felt spongy or full. I have never had an official diagnosis of peripheral neuropathy to date. Yet my situation has escalated to mirror the symptoms I read about so much here at this group. I've had numerous xrays all over my lower extremities and I honestly can't remember all the findings. I know I have spotty areas of arthritis but you wouldn't know it to look at me. So when members of the group mention the type of neuropathy they have, I'm lost. I mean pain is pain, right? And everything I read about neuropathy points out that it just gets worse. And doctors can't figure it out. For once I'm at a lost for words because I really don't know what I'm talking about other than I have received a diagnosis of lumbar radiculopathy. So I guess the nerves in my damaged spine are the culprit. That's where it began. So what would you call that?

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@cb3

About two years ago I started having tingling and other sensations in my right foot, so I went to a podiatrist. He said I had radiculopathy, referred pain from my back to my feet. It affected the metatarsals which felt spongy or full. I have never had an official diagnosis of peripheral neuropathy to date. Yet my situation has escalated to mirror the symptoms I read about so much here at this group. I've had numerous xrays all over my lower extremities and I honestly can't remember all the findings. I know I have spotty areas of arthritis but you wouldn't know it to look at me. So when members of the group mention the type of neuropathy they have, I'm lost. I mean pain is pain, right? And everything I read about neuropathy points out that it just gets worse. And doctors can't figure it out. For once I'm at a lost for words because I really don't know what I'm talking about other than I have received a diagnosis of lumbar radiculopathy. So I guess the nerves in my damaged spine are the culprit. That's where it began. So what would you call that?

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Hi @cb3, It's easy be lost for words when it comes to all of the different types of neuropathy and their causes. Nerve compression in the spine being a big one. I have idiopathic small fiber peripheral neuropathy but only have the numbness. I'm sure my lower back issues and degenerative disc disease plays a part but I'm not sure it's the only reason for my neuropathy.

There are quite a few people with back and spine issues that have found Myofascial Release Therapy helpful for many different conditions. Here's a discussion on MFR if you haven't already seen it:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@johnbishop

Hi @cb3, It's easy be lost for words when it comes to all of the different types of neuropathy and their causes. Nerve compression in the spine being a big one. I have idiopathic small fiber peripheral neuropathy but only have the numbness. I'm sure my lower back issues and degenerative disc disease plays a part but I'm not sure it's the only reason for my neuropathy.

There are quite a few people with back and spine issues that have found Myofascial Release Therapy helpful for many different conditions. Here's a discussion on MFR if you haven't already seen it:
-- Myofascial Release Therapy (MFR) for treating compression and pain:
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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Goodmorning, John. Thanks for the link to myofascial. I'll check it out.

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