Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@artscaping

@ahendershot, @johnbishop, Good morning to you and I would like to add my welcome. I recognize the place where you are now residing. And I hear you wondering, "what's next". I just have a couple of questions. Are you taking all 900 mg of gabapentin at night? I have found that a 900 mg dosage taken at 8:30 pm or no later than 9:30 pm will help with the tingling in the hands during the night. You might even get a couple of pretty painless hours in the morning….enough to do morning chores.

For the needles in your hands (also known as pin cushions)….have you tried any other topicals? I experimented with essential oils…e.g. copaiba and deep blue together, and a prescription lidocaine cream with other pain reducing additives. Both options served to take the edge off and lingered for an hour or so. My real solution came in the form of Papa & Barkley 3:1 CBD/THC Releaf Balm if you can find it where you live. My life partner also uses it on his 72-year-old knee and ankle that have suffered a bit with this year's heavy snow. Please let me know how I might be helpful. And may you have a pain free day or even an hour. Chris

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Hi Chris,
Thanks for the support and great information! I’ll see what I can find locally, and beyond.
I take the 900mg in 300mg capsules, morning, noon, and night. From what I have been finding online, that dosage is fairly small. I told my neurologist that I would try it a good two weeks, as he wished, before calling in to ask for a higher dosage. I would rather take all or most of whatever dosage I find that works, just before bed, as you suggest. Sleeping is definitely something I took for granted. That humbles me in a big way.
Andrew

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@ahendershot

Hi Chris,
Thanks for the support and great information! I’ll see what I can find locally, and beyond.
I take the 900mg in 300mg capsules, morning, noon, and night. From what I have been finding online, that dosage is fairly small. I told my neurologist that I would try it a good two weeks, as he wished, before calling in to ask for a higher dosage. I would rather take all or most of whatever dosage I find that works, just before bed, as you suggest. Sleeping is definitely something I took for granted. That humbles me in a big way.
Andrew

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@ahendershot I've never found Gabapentin effective for pain relief, but it does help me sleep…if I don't mind being groggy for half the day following. For sleep, try 800 mg some 30 to 60 minutes before bedtime.

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I think the top mg for gabapentine is 3600 — 3 x a day — I know of several who take 2400 a day, but you need to work up to that very carefully and in small increments — hope it works for you without the side effects

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@margottaylor

To @julchilds … I’m curious…who told you the cause of your PN? Specifically the twisted pelvis and severely tight hamstrings? Thanks

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No one actually told me those things. I just put it together because of my experience at the chiropractor. I had an appt. to see a neurologist because the PN was spreading and worsening. In the meantime I was trying a new chiropractor and he did that scraping on my calves. He had a hunch it would help the PN, which it did incredibly. Some has returned but I will ask him to do it again. My PN really does seem to be from those tight muscles, although I have also had some in my elbows from leaning on them too long!? Because of the disappearance of symptoms, I canceled my appt. with the neurologist.

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@julchilds

No one actually told me those things. I just put it together because of my experience at the chiropractor. I had an appt. to see a neurologist because the PN was spreading and worsening. In the meantime I was trying a new chiropractor and he did that scraping on my calves. He had a hunch it would help the PN, which it did incredibly. Some has returned but I will ask him to do it again. My PN really does seem to be from those tight muscles, although I have also had some in my elbows from leaning on them too long!? Because of the disappearance of symptoms, I canceled my appt. with the neurologist.

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@julchilds Here is a discussion you might find helpful. Any tight place in your body can affect the nerves passing through those areas. Myofascial Release is a type of physical therapy that can help. I do a lot of MFR work with my therapist and it has many benefits. https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@jasont

Yes i have had peripheral nephropathy for 5 years now. I am a 45 year old male and they tell me they cant tell me why i have it or how i got it. it is so frustrating and not only affects me but my family. I am thinking of doing a nerve block, has anyone on here ever tried it?

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I have PN from the effect of of a stroke I had last year. After my stroke, I had to have 2 crainiotomies one to clip a 10 mm unruptured aneurysm and one for a csf leak, and was told I would never walk again. But the pain of the PN was awful and the put me on lyrica and it made me walk again. I do wish however I could come off of the lyrica. I'm just wondering how to do it safely…

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@michelle69

I have PN from the effect of of a stroke I had last year. After my stroke, I had to have 2 crainiotomies one to clip a 10 mm unruptured aneurysm and one for a csf leak, and was told I would never walk again. But the pain of the PN was awful and the put me on lyrica and it made me walk again. I do wish however I could come off of the lyrica. I'm just wondering how to do it safely…

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Hi @michelle69, welcome to Connect. It is great that you are able to walk again after being told you would never walk again. It sounds like the Lyrica alleviated your pain from the neuropathy and you are now able to walk and no longer have any pain. Are you having any side effects from the Lyrica? I have no medical training or background but I would not try tapering off of the Lyrica without consulting with your doctor.

There is another discussion here on Connect you may be interested in reading and joining in with any questions you may have:

> Groups > Depression & Anxiety > Tapering off Lyrica gave me panic, nausea, extreme anxiety
https://connect.mayoclinic.org/discussion/lyrica/

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My daughter bought me for Christmas the Hot and Cold Pain Relieving Gel Socks from Sharper Image. They are green and black. They are very soft and I put the gel packs in the freezer. If I am watching tv I slip the ice packs in the socks and make myself comfortable on the couch watching something funny. I find the ice to numb the neuropathy (electricity feeling) for a little bit. It is only temporary but each day I try and find ways to cope.

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I'll try the socks! I'll try anything. I find that if I rub any kind of lotion or cream onto my feet and legs, they quiet down for awhile. Also, going into the jacuzzi and doing stretches while rubbing my free hand all the way down the stretched leg muscles to my feet helps for awhile. Running helps me but I can't do that 16 hours a day or I would have other problems, so I do it for an hour before my medicine is due and the 'endorphins' help me hold off until the scheduled time. I get worse when I sit down for awhile and even worse when I lay down. I'm more comfortable walking or running. I bought a foot massage pillow but it doesn't do anything for me. Peggy

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@lynsorensen

Medical marijuana has given me an almost pain free life after years of doctors putting me on opioids. I get the CBD oil capsules which is NOT hallucinogenic at all. I take one each morning with breakfast. And I got a jar of the ointment to massage any ‘hot spots’ that occur. When I get that sharp pain in my leg or shoulder, I rub it in and the pain is gone in 10 minutes.

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Where are you getting the CBD oil capsules? Does it have any THC in it?

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John I have been to the protocol site many times and I do take some of the supplements . Did you go full and do everything, all of them ,and as many as it daily said?? I have not ordered the hemp seed oil. How long did you do the full protocol? Do you still take the full amount everyday??

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where is protocol?

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protocol.?

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@peggyn

John I have been to the protocol site many times and I do take some of the supplements . Did you go full and do everything, all of them ,and as many as it daily said?? I have not ordered the hemp seed oil. How long did you do the full protocol? Do you still take the full amount everyday??

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@peggyn @jjwest — I have been a member of the closed Facebook group Solutions to Peripheral Neuropathy Pain & Discomfort since August 2016. I have been on the full protocol since Sept 2016. The purpose of the group is to offer a natural alternative to all of the pain drugs that are used to treat neuropathy — It is not a cure for neuropathy – there is no cure.

Facebook: http://www.facebook.com/groups/spnpd.
Website: http://solutions2pnpd.com/

I have no medical training or background. For me the choice is simple since I have no pain with my idiopathic small fiber peripheral neuropathy. The medical community has no drugs available that address numbness that is the major symptom of my neuropathy. The drugs offered that treat the pain do so by blocking the pain signals in the brain – not a coincidence that one of the long term side effects of the drugs like gabapentin and lyrica is foggy brain and they are difficult to taper off. Maybe I would feel different if I had pain. I know how great the prednisone makes me feel when I have an episode of polymyalgia rheumatica (PMR). What the protocol of supplements does is provide an alternative treatment to replace the drugs after you are on the full protocol and the effects of taking the protocol start working (no pain). You can't pick and choose which ones to take. They all work together to promote nerve health.

Another thing to mention is that diet is very important. Both sugar and alcohol are worse for you when you have neuropathy. I still struggle a little with the sweets but I watch what I eat and try to minimize sugar intake.

My PN story on Connect: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

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I don't understand 'protocol' in this context. Is it like a medical 'program' ?

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