# Neuropathy



## da3ley (Jun 25, 2018)

How do you deal with this horrible condition? I've tried about everything I know to alleviate this situation, and it's terrible. Shooting nerve pain. Any ideas or comments? It's not diabetic BTW, but peripheral.


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## Tracyarts (Jun 25, 2018)

I have a form of peripheral neuropathy related to my stroke. There's a half dollar sized spot on the top of my left (affected side) foot that feels like someone is simultaneously searing it, stabbing it, and touching a live electrical wire to it. 24/7/365. 

I take Lyrica to manage the pain, only a low dose (75 mg a day I believe) and it knocked the pain back to an occasional twinge. I hate some of the side effects, but the pain is managed.


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## da3ley (Jun 25, 2018)

Tracyarts said:


> I have a form of peripheral neuropathy related to my stroke. There's a half dollar sized spot on the top of my left (affected side) foot that feels like someone is simultaneously searing it, stabbing it, and touching a live electrical wire to it. 24/7/365.
> 
> I take Lyrica to manage the pain, only a low dose (75 mg a day I believe) and it knocked the pain back to an occasional twinge. I hate some of the side effects, but the pain is managed.


I have heard of Lyrica for pain management. That is great that it helps you, and I may ask my Doc if I should try it as well. Sometimes I cant stand it anymore. It sounds like your is horrendous as well. Thank you for the reply.


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## Cynthia (Jun 28, 2018)

An internist prescribed Lyrica for diabetic neuropathy about 12 years ago, but my body couldn't tolerate it. (It caused a lot of water retention -- 11 lbs in 7 days.) Since then, the numbness has gotten progressively worse, but I've managed to keep the sharp pains under control with supplements that have a good track record in efficacy studies. I currently take Alpha Lipoic Acid, Acetyl L-Carnitine, and Evening Primrose Oil. (The Ray Sahelian link below has a lot of suggestions which you can then research on Drugs.com, WebMD, and other sites.) Because I also have kidney disease, I lean toward supplements that might benefit both conditions and checked with my nephrologist to make sure that he was okay with the choices.

http://www.raysahelian.com/diabeticneuropathy.html


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## ScreamingChicken (Jun 28, 2018)

I have diabetic nephropathy. Luckily, the stabbing pains are a non issue for me. It's the random nicks and cuts I have no idea are there that is the real problem. I won't feel anything or know about it until someone says "hey, did you know you are bleeding?"


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## da3ley (Jun 28, 2018)

Cynthia said:


> An internist prescribed Lyrica for diabetic neuropathy about 12 years ago, but my body couldn't tolerate it. (It caused a lot of water retention -- 11 lbs in 7 days.) Since then, the numbness has gotten progressively worse, but I've managed to keep the sharp pains under control with supplements that have a good track record in efficacy studies. I currently take Alpha Lipoic Acid, Acetyl L-Carnitine, and Evening Primrose Oil. (The Ray Sahelian link below has a lot of suggestions which you can then research on Drugs.com, WebMD, and other sites.) Because I also have kidney disease, I lean toward supplements that might benefit both conditions and checked with my nephrologist to make sure that he was okay with the choices.
> 
> http://www.raysahelian.com/diabeticneuropathy.html


ill try anything at this point. those sharp, shooting pains are horrible. Do these supplements help w/ just the shooting pains or in general? i cant stand it anymore.. im even getting tickling, sensations in my legs, arms and back now.


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## Cynthia (Jun 29, 2018)

da3ley said:


> Do these supplements help w/ just the shooting pains or in general?



The numbness has gotten progressively worse over the years, but the supplements do give me relief from 1) the stabbing pains, 2) the crushed-bones feeling, and 3) the feet-on-fire sensation. The neuropathy is much more manageable now. Whatever you do, though, *always* check your feet daily for injuries.


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## BigElectricKat (Jul 9, 2018)

I'm going to see my doc for this very issue next week (the 18th). I'll let you know what hapens and if he prescribes anything for it.


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## Tracyarts (Jul 12, 2018)

Something else I found out the hard way. If your blood glucose has been high for a long time, and you lower it dramatically over a short period of time, you may have rebound neuropathy pain as your damaged nerves start to heal. 

On one hand that's good, only live nerves cause pain, and this means that there are nerves which were not damaged to the point of no return from the high blood glucose levels, and they will heal. On the other hand it's bad because neuropathy pain can be agonizing, and it takes quite a while to get better.


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## BigElectricKat (Jul 12, 2018)

Tracyarts said:


> Something else I found out the hard way. If your blood glucose has been high for a long time, and you lower it dramatically over a short period of time, you may have rebound neuropathy pain as your damaged nerves start to heal.
> 
> On one hand that's good, only live nerves cause pain, and this means that there are nerves which were not damaged to the point of no return from the high blood glucose levels, and they will heal. On the other hand it's bad because neuropathy pain can be agonizing, and it takes quite a while to get better.


That's a good head up. I keep my eye on it.


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## Tracyarts (Sep 9, 2018)

Well, it looks like I might not be able to tolerate the Lyrica, or at least not at the dose I'm currently at. The nerve pain came back, so my doctor upped my dose from 75 mg to 150 mg. The pain is better but I'm having pretty much every single possible side effect now. And instead of getting better over time, it's getting worse. It has gotten to the point where I can't function anymore with the fatigue and brain fog. So, Tuesday I go talk to the doctor about getting on a taper schedule to safely back down to 75 mg again and see if the side effects start to fade. If not, I'll have to taper off completely and look into other options.


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## BigElectricKat (Sep 10, 2018)

Tracyarts said:


> Well, it looks like I might not be able to tolerate the Lyrica, or at least not at the dose I'm currently at. The nerve pain came back, so my doctor upped my dose from 75 mg to 150 mg. The pain is better but I'm having pretty much every single possible side effect now. And instead of getting better over time, it's getting worse. It has gotten to the point where I can't function anymore with the fatigue and brain fog. So, Tuesday I go talk to the doctor about getting on a taper schedule to safely back down to 75 mg again and see if the side effects start to fade. If not, I'll have to taper off completely and look into other options.


I hope you find a solution that works well for you soon.


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## Cynthia (Sep 10, 2018)

Tracyarts said:


> So, Tuesday I go talk to the doctor about getting on a taper schedule to safely back down to 75 mg again and see if the side effects start to fade. If not, I'll have to taper off completely and look into other options.



Some people get relief by using a *tens unit*. I've never tried one, but the prices are now way more affordable than what they were a decade ago.


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## BigElectricKat (Sep 11, 2018)

Cynthia said:


> Some people get relief by using a *tens unit*. I've never tried one, but the prices are now way more affordable than what they were a decade ago.


It's weird. I have good days and bad days. Some days (like today) I'm doing alright, not much pain and just a little numbness. Other days, my feet are so sensative just putting sock on is annoying.


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## Tracyarts (Oct 2, 2018)

The Lyrica tapering is not going well. I'm doing a very slow and gradual taper but still having withdrawal symptoms in addition to the Lyrica side effects. 

I'm taking two capsules a day to get the proper current dose, but missed one of my Sunday capsules (I accidentally left it in my pill organizer) and only had a partial dose. By late yesterday afternoon I was in severe withdrawal. Shaking, hands sweating, brain zaps, nausea, head pain and pressure, dizziness, body aches, tingling all over, severe anxiety attacks coming in waves, fear of impending death, ears ringing. I realized I had missed a pill and knew what was happening. I took the proper dose last night but am still feeling awful. 

I had taken Gabapentin, a drug related to Lyrica when I first had neuropathy pain in 2016, and had to stop it abruptly after an allergic reaction. The withdrawal symptoms were so severe that I ended up in the ER after having a suspected seizure. I was very apprehensive about taking Lyrica, but neuropathy pain is so unrelenting that I took what was offered just to make it stop. 

I have never had a positive experience with any SSRI or GABA drugs. After the Lyrica there aren't many other options. Cymbalta and Topomax were mentioned, but I was warned that they can be worse than Lyrica in terms of side effects and withdrawal complications. 

I'm still hoping I find a dose of lyrica that relieves the pain enough but has side effects I can live with. It's a devil you know versus the devil you don't know scenario.


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## BigElectricKat (Oct 2, 2018)

Tracyarts said:


> The Lyrica tapering is not going well. I'm doing a very slow and gradual taper but still having withdrawal symptoms in addition to the Lyrica side effects.
> 
> I'm taking two capsules a day to get the proper current dose, but missed one of my Sunday capsules (I accidentally left it in my pill organizer) and only had a partial dose. By late yesterday afternoon I was in severe withdrawal. Shaking, hands sweating, brain zaps, nausea, head pain and pressure, dizziness, body aches, tingling all over, severe anxiety attacks coming in waves, fear of impending death, ears ringing. I realized I had missed a pill and knew what was happening. I took the proper dose last night but am still feeling awful.
> 
> ...


Wow. I tell you, these drugs nowadays are so hit or miss (mostly misses). Sorry to hear you've had such bad withdrawal symptoms. I pray you find that happy medium soon.


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## Tracyarts (Oct 12, 2018)

I'm down to 100 mg from 150 mg of the Lyrica. I stay at this dose for 2 weeks and can then decide to keep on with it or drop to 75 mg. Then on down to 50 if need be. So far so good. The side effects are improving slowly, with a minimum of withdrawal symptoms. I'm having a little bit more pain but it's still managed enough to be okay with it. I really hope to find a middle ground with the medication.


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## WALKER44 (Feb 4, 2019)

I am a 71 year old male with neuropathy. I have stabbing pain in one foot. I have diabetes and kept my A1C around 7. Morning blood sugar levels at 120 to 150. I eat as little as possible. It helps with the A1C levels and the blood sugars. It also helps with the numness in my feet. But for the pain I take omega reds, and B vitamins super blend which controls the neuropathy. For the attacks of pain in my foot I use vitamin B12 1000mg placed under the tongue about 3 time a day. This knocks out the stabbing pain.


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## Tracyarts (Feb 4, 2019)

I had way too many side effects from the Lyrica, so I'm tapering all the way off it. Since I developed the same kinds of withdrawal symptoms I did from Gabapentin, it's been a slow process. I'm almost off, 3 weeks to go until I take my last dose, then the real withdrawal starts. 

I really hope it passes fast and with a minimum of complications. 

Interestingly, my neuropathy pain is about 80% better and I no longer need medication to manage it right now. Only occasional twinges and minor irritation now. No idea what caused it. Could have been any of a handful of things.


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## Tracyarts (Apr 20, 2019)

So, I finally got some answers about my neuropathy. I hate that it takes so long to figure out what's causing some of my medical problems. But with multiple chronic conditions, it could be any of many and it's a case of diagnosis by exclusions. 

The neuropathy pain wasn't caused by my stroke, although the fact that it's much worse on my affected side probably is stroke related. 

It's a complication of my autoimmune disease, Sjogren's syndrome. Sjogren's can cause peripheral neuropathy pain. Usually pain without numbness. I only have minor loss of sensation in my fingers and toes, but occasionally a lot of pain. 

And the occasionally part was a big clue. Once I was off the Lyrica, I noticed that I only have ongoing low level neuropathy pain when lab tests show that my inflammation levels are significantly elevated, and high level periods of neuropathy pain when I have a flare up. 

So, I'm not taking any nerve pain medications now, I'm managing the neuropathy pain by reducing inflammation. 

By sticking to an anti-inflammatory diet, taking certain supplements, sticking to a regular sleep schedule, limiting sun exposure, and reducing stress. 

I really only have a lot of pain during flare ups now, but they're happening farther apart and are shorter-lived. I can deal with it for a day or so.

A day of pain is preferable (to me) than ongoing side effects from nerve pain medications.


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## BigElectricKat (Apr 22, 2019)

Tracyarts said:


> So, I finally got some answers about my neuropathy. I hate that it takes so long to figure out what's causing some of my medical problems. But with multiple chronic conditions, it could be any of many and it's a case of diagnosis by exclusions.
> 
> The neuropathy pain wasn't caused by my stroke, although the fact that it's much worse on my affected side probably is stroke related.
> 
> ...


What do you do for an anti-inflammatory diet?


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## Tracyarts (Apr 22, 2019)

BigElectricKat said:


> What do you do for an anti-inflammatory diet?



Avoid or at least restrict red meat, processed sugars and carbohydrates, dairy, heavily processed foods in general, trans fats, and alcohol. 

Enjoy lots of fish, especially oily fish, vegetables, whole grains, some poultry, fruit, nuts, olive oil, avocados, seeds, spices like turmeric and ginger, probiotic foods and prebiotic foods. The Mediterranean diet is a good example of an anti-inflammatory diet. My doctor is big on recommending drinking tart cherry juice every day too. 

It's easy to work with because the list of trigger foods is pretty short. 

Some people have to avoid grains, beans, and nightshade vegetables but they don't seem to be a problem for me.


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## BigElectricKat (Apr 22, 2019)

Thanks!


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