Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@jimhd

I began feeling pins and needles in my feet, up to my knees about 5 years ago, so I met with a neurologist, and he diagnosed idiopathic peripheral neuropathy. A year or so later, numbness became more pronounced in my toes and the balls of my feet. Next came the burning pain. That’s where I am today. I’ve tried every medication used to treat neuropathy, with no effect – except for Lyrica, which made me incoherent, and put me in the hospital for 3 days. I landed on Cymbalta (duloxetine), the last option on the list, and I’ve been taking morphine sulfate contin for a couple of years. I tried marijuana one time, and it reduced the pain noticably. But, the cost is too high for me to consider taking it. I use Lidocaine cream at bedtime, and it helps me go to sleep, and sometimes I’ll wake up from the pain and put more cream on my feet. I have a blanket lifter that keeps the blankets off my feet, and sometimes it helps to wear a loose pair of socks to bed. It hurts my heels to lie on my back, so mostly I lie on my side, with my feet either on a pillow, or hanging off the pillow but not touching the bed. The soft pillow gives me momentary pleasure, to be relieved from the pain, if only for a couple of minutes.

I started taking cymbalta after I was already on morphine sulfate contin, and after a couple of months I wondered what the Cymbalta would do on its own, so very slowly weaned off the morphine, but the pain was too bad, and after a few weeks off it, I started taking it again. I was taking 30mg 3x a day, but when I restarted it, I so far have only gone up to 15 mg 3x/day. I know many people are paranoid about opiates, but for me, it helps the pain, and I’ve found I can get off it without any signs of dependency. I’m in the long, excrutiatingly slow process of getting a spinal cord stimulator implant, which has the potential of reducing the pain.

Jim

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Hi,
I use a cream that I rub into my feet three times a day and as the pain got
less and less I quit using it only if I have a flare up.
It is called DermaTran Health solutions. I am almost pain free except when
it starts again and then I just start rubbing in some for about a week and am
pain free again.
If you want more info I can send it to you.
 

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@aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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Hello Rabbit. I have severe foot pain. The opiates I have been prescribed seem to not be as effective as they were at the beginning. In fact, they maybe help about 30% of the pain at this time. I am going to research medical marijuana next.

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@martid

There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.

What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.

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My Neuropathy supposedly was caused by my type 2 diabetes and if not, there is no specific reason. I have tried Lyrica which was quite expensive but offered no relief. I take Gabapentin and Cymbalta but have not gotten relief. I use opiates which helped a lot the first few years but no longer seem effective. My next step will be researching medical marijuana. The last resort are two implanted devices that Medtronic manufactures, however, the Neurologist called them “last resort” options.

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@martid

There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.

What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.

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Hello @philio66 – I have idiopathic small fiber neuropathy in both legs and feet. Fortunately I only have the numbness and not pain that you and other folks have with your neuropathy. I’ve had it for 20+ years and only had the EMG and MRI tests done this past March to get a specific diagnosis. My Mayo neurologist told me that there is no drugs or topicals that will help with the numbness. He also told me to just watch it and if it gets worse let them know. Eventually he said it may affect my sensory/motor nerves and may cause vital organs to shut down. At that point I started my own research and tried to learn as much as I could – have tried most of the snake oils, essential oils and a few other treatments which have done nothing.

I found a closed Facebook group – Solutions to Peripheral Neuropathy Pain & Discomfort (https://www.facebook.com/groups/SPNPD/) which actually has a solution to the PN problem. I don’t know if it will work for everyone but there are 3000+ members in the group with all different types of PN diagnosis. Basically it’s multiple over the counter vitamins/supplements that help to repair damaged nerves which are the source of the pain signals being sent to the brain. There are many members who have been able to titrate off of their pain medications and just take the supplements. They recently received their 501c3 certification. There are many members with type 2 diabetes and chemo induced PN and many others. Several were bed ridden and now are completely off of their pain medications and just on the protocol by itself.

I have been taking the protocol of supplements since the first week in September and have seen results. When I started the numbness was just below the knees and it is currently just above the ankles. It doesn’t sound like much but to me it is significant because it’s not progressing up my legs like it was. I would recommend you check out the group and read through the new member welcome information that explains how it works then discuss the supplements with your neurologist or PCP to make sure there is nothing that would interact with any medications you are currently taking. I ran the list by my Mayo PCP who forwarded it to the Mayo pharmacist. He only had concern about one supplement but it was minor and I actually found information on the omega 3 oil dosage he was concerned about on a Mayo Clinic research topic for dosage levels used to treat specific medical issues. I am telling you all of this because I want to make sure you do your own research and be your own advocate. It is important to have a discussion with your neurologist and/or primary care doctor and have some questions ready to ask them. I am not a medical professional but what I have learned from the group is that the pain medications do zero to fix the nerve damage that is causing the pain. They only block/mask the pain signals from the nerves to make the pain go away. A lot of the drugs being used to treat PN are anti-seizure drugs (http://mayocl.in/1TKJdhs) and they do come with side affects (foggy brain being one of them when on high doses). The protocol works to repair the damaged nerves which in turn gets rid of the pain. The only caveat is if the nerves are damaged beyond repair (surgery, broken nerve fibers, crushed, etc.).

I don’t know the answer but I know that you should continue to be a strong advocate and learn as much as you can about your condition.

Hoping you find an answer that works for you.

John

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In the FaceBook there is an ad? for
Welcome to Genes for Good!
Before we jump in let’s review how the study works in four slides.
After that, since this is a research study, we’ll take you through a consent form. It lays out your role in the study, including the benefits and risks of participating. Please read it carefully!
What do u think – did you join?

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@mari

In the FaceBook there is an ad? for
Welcome to Genes for Good!
Before we jump in let’s review how the study works in four slides.
After that, since this is a research study, we’ll take you through a consent form. It lays out your role in the study, including the benefits and risks of participating. Please read it carefully!
What do u think – did you join?

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Looked at the info but didn’t start the survey or join. Need to find some time as I think it might be beneficial.

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One of my friends said “use Vicks on your feet before going to bed and put on some white sox” so, I did. I tasted Vicks for two days … but it helped – besides that my feet are nice ‘n soft. My question is… is there a downside to using Vicks (or similar product) in this manner>

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@mfobrien36

One of my friends said “use Vicks on your feet before going to bed and put on some white sox” so, I did. I tasted Vicks for two days … but it helped – besides that my feet are nice ‘n soft. My question is… is there a downside to using Vicks (or similar product) in this manner>

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Hi Mary, I’m sure it’s OK. I haven’t used Vicks but I have used products like IcyHot and regular Vaseline to help with dry/cracked skin. I also use white diabetic socks at night that are loose fitting. This is important for folks with peripheral neuropathy in the feet as you sometimes can’t feel what you are stepping on/in and can injure your feet.

John

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John, I am with you with the socks. I buy Wigwam brand diabetic socks. The only brand that I can stand to wear with shoes or without. I also wear them to bed because even the feel of sheets, blankets bother my feet.

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@mfobrien36

One of my friends said “use Vicks on your feet before going to bed and put on some white sox” so, I did. I tasted Vicks for two days … but it helped – besides that my feet are nice ‘n soft. My question is… is there a downside to using Vicks (or similar product) in this manner>

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I buy Wigwam brand diabetic socks, mostly white and the largest size they have. I cannot wear anything else.

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I have neuropathy in my feet and fingers. It is a side effect of the Taxol chemotherapy I finished in October. No improvement after 3 months.

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@caf132

I have neuropathy in my feet and fingers. It is a side effect of the Taxol chemotherapy I finished in October. No improvement after 3 months.

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WHAT ARE U ASKING FOR? U DO NOT SAY ANYTHING BUT THAT:NO MENTION OF A NEUROLOGIST’S VISIT,NO MENTION OF TAKING ANY MEDICATION FOR THE CONDITION:NOTHING!!

IF U HAD VIEWED THIS DIGEST OVER THE PAST FEW MONTHS U WOULD HAVE SEEN MANY MEDICATIONS MENTIONED:LYRICA,GABAPENTIN AND OTHERS.

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@caf132

I have neuropathy in my feet and fingers. It is a side effect of the Taxol chemotherapy I finished in October. No improvement after 3 months.

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Welcome to this discussion about neuropathy @caf132. Neuropathy can be caused by many things, including chemo drugs. Sometimes the neuropathy will go away with time, sometimes it is permanent. Three months may not be long enough to know for sure in your case. Do you have any other conditions that may be contributing to the neuropathy, like diabetes for example?

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@caf132

I have neuropathy in my feet and fingers. It is a side effect of the Taxol chemotherapy I finished in October. No improvement after 3 months.

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@ujeenjack, not everyone comes to this forum with a question. It’s not mandatory. Sometimes people just want to talk. I agree with you that reading through past messages gives a wealth of information, and thank you for your contributions.

May I suggest that you not write in ALL CAPS please. All caps are considered shouting in online communications. You can read the Community Guidelines where it is stated not to use all caps https://connect.mayoclinic.org/community-guidelines/
Thanks

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@caf132

I have neuropathy in my feet and fingers. It is a side effect of the Taxol chemotherapy I finished in October. No improvement after 3 months.

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Hello @caf132 – I have been battling neuropathy for a lot of years. Last year it got so disrupting t my life, my primary doc referred me to a neurologist. After many tests,sticking me, and electrocuting me, it was determined that mine was caused by not enough vit b-12. I had been taking vit b12 shots and 300mg of gabapentin a day. he upped my vit b-12 by having me taking 5000 mgs under tongue and upped my gabapentin to 900 mgs a day It calmed everything down to where it is no longer driving me crazy. Have your doc test your vit b12 levels It could be the chemo caused you to be low.

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