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Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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

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ridgerunner | @ridgerunner | Aug 24, 2016
In reply to @aliskahan "Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who..." + (show)
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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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Emily Anne. about the same here. Had restless leg syndrome and now non specific neuropathy--just diagnosed. Waiting to see neurologist. Hoping to learn from this group..

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twinky | @twinky | Aug 24, 2016
In reply to @martid "There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo..." + (show)
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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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I have idiopathic neuropathy and need some help. How do you use the TENS? I have one and could use it but don't know how and where to put it. Neuropathy has started up my legs. Would this help to stop it?
Thank you for any tips you can give me.

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 24, 2016
In reply to @martid "There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo..." + (show)
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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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Hi @twinky, I use a Zopec DT-1200 which has foot pads that you just place your feet on. I use it for my PN which I only have numbness in my legs and feet. It helps a little with the numbness but doesn't take it away. Here is a YouTube video that shows the pad placements that might be helpful for your use - https://youtu.be/usVvGIbHjOo - hope this helps.

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twinky | @twinky | Aug 24, 2016

I have Neuropathy and that some use tens to help. I am wondering how to use it. In a area around the ankle or move up to where the problem seems to have moved. I just have it in my feet and ankles. I have had it for about 2 years now. I have the pain relief with taking Gabapentin 3 times a day and using a cream every night. I'm thinking it might slow down the progression of the Neuropathy.

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Colleen Young, Connect Director | @colleenyoung | Aug 24, 2016
In reply to @superwife "I've had this for at least 10 years/ Gabapentin has made the 24/7 extreme tingling in..." + (show)
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I've had this for at least 10 years/ Gabapentin has made the 24/7 extreme tingling in my feet bearable & I'm grateful fpr it' Cause has not been determined I don't fall in any of the usual categories, and am told about 25 percent of cases cannot be traced to specific cause.

I now have Atrophie Blanche - no known effective treatment of ankle & foot - dpn't know if that's in this grroup - but would welcome info for pain relief -
- it's sometimes extreme & much worse than the pn pain.
/ Superwife

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Gail, are you saying that the medication gave you shingle-like symptoms? Are you continuing with gabapentin?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 24, 2016

Welcome Twinky. @ladyjane85 and @elltd may be able help answer your questions about TENS.

You can also post a message to this discussion https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 24, 2016
In reply to @aliskahan "Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who..." + (show)
Profile picture for Ali Skahan @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?

Jump to this post

Welcome @ridgerunner. You've landed in a great group of people.
@emilyanne @johnwburns @martid @rabbit10 @johnbishop will you join me in welcoming RidgeRunner?

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Mentor
John, Volunteer Mentor | @johnbishop | Aug 24, 2016
In reply to @aliskahan "Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who..." + (show)
Profile picture for Ali Skahan @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?

Jump to this post

Welcome @ridgerunner - I don't have the restless leg syndrome but do have SFPN in my legs and feet, no pain, just numbness and a little tingling sometimes. My neurologist diagnosed me with idiopathic neuropathy which he thought could be hereditary since I've had it 15+ years, just never bothered to get a diagnosis until this past March, my bad. Hoping you get some answers after meeting with the neurologist. Good luck!

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ujeeniack | @ujeeniack | Aug 24, 2016
In reply to @aliskahan "Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who..." + (show)
Profile picture for Ali Skahan @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?

Jump to this post

GET *EMG TESTED!*<br><br>

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Mentor
Jim, Volunteer Mentor | @jimhd | Aug 25, 2016
In reply to @jimhd "I do, primarily in my feet and ankles. Responding to the question asking if anyone deals..." + (show)
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I do, primarily in my feet and ankles. Responding to the question asking if anyone deals with peripheral neuropathyu.

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After my visit with the pain specialist on Monday, I stopped taking Morphine sulfate contin, and am supposed to take Oxycodone for a few days as part of the tapering off process. Now my feet hurt all the time. I really want to figure out if Cymbalta will do the job for me, and I'm planning to go without morphine sulfate for a few weeks. The doctor did say that I could start back on the morphine if the pain becomes too much. I understand the effects of long term use of opioids. They're not good. But Cymbalta was the last medication left on the list, and there's not much more that can be done. Kind of discouraging.

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