Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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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@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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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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@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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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!

Liked by keeptrying

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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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GET *EMG TESTED!*

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@jimhd

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.

Liked by tonyc55

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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?

Jump to this post

Welcome ridge runner you have found a great group of helpful people. Did you have a question about the TENS machine? I use one when needed. I put the pads where the pain is and set it as high as is comfortable. Where I had constant pains has now stopped. Haven’t had to use it for a while now. Hope this helps.

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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?

Jump to this post

So good to hear from you again @rabbit10. Can you believe that the simple question “Anyone here dealing with peripheral neuropathy?” that you put forward last April now has over 230 responses?

It was actually another new member, @twinky, who was asking about the TENS machine. You can see her message and questions here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=1#post-232354

How are you doing Rabbit?

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@superwife

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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@ gailfaith Concerning Shingles: Sorry for any confusion. When I saw the start of the rash I knew it was Shingles as I have had them twice before and now again even after I have had the vaccine. When I had it previously, there were no Rx recommended for shingles. This time when I saw my PCP, he wrote for Valtrex. WIthin 15 minutes of taking the first dose, my head felt funny. At the same time I saw my PCP, I made an appt with my dermatologist also and got an appt several days later at which time he wrote for Gabapentin in addition. When I got it filled I took the first dose, and then read the side effects which seemed to be simiar to the Valtrex ones. So I never took any more of the the Gabapentin . And since I was already taking Valtrex and was miserable, I did not take any more Valtrex either starting the next day. I was afriad to drive. SInce this round of the Shingles was not a severe as I had remembered, I attributied that to the vaccine. The rash has now healed so I can get back into the pool for my Physical Therapy but there is still some discomfort. So I am wondering about maybe trying to take some of the Gabapentin alone (I still had 59 doses left from the original 60!) Can anyone comment on their experience with Gabapentin when taken alone and its side effects. If it is anything like the Valtrex side effects, which were worse than than the disease …. I won’t even try. I was too miserable when I took it with the Valtrex so that I couldn’t tell if the Gabapentin made the side effects worse. I know everyone has their own way of reacting to any Rx. But any suggestions are welcome. The dermatologist indictated that the Gabapentin reduced the lingering discomfort which I now appear to have. As an aside, it seems for me.,1/2 of a 5 mg Ativan tab ( prescribed for anxiety) seems to help.

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@jimhd

I do, primarily in my feet and ankles. Responding to the question asking if anyone deals with peripheral neuropathyu.

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Hi, how you tried neurotic, same as gabpentin. It work for the burning, tingling and pain I have in my feet.

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@jimhd

I do, primarily in my feet and ankles. Responding to the question asking if anyone deals with peripheral neuropathyu.

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I believe you mean Neurontin??

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@jimhd

I do, primarily in my feet and ankles. Responding to the question asking if anyone deals with peripheral neuropathyu.

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If it’s on the list of neuropathy meds, I tried it.

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@jimhd

I do, primarily in my feet and ankles. Responding to the question asking if anyone deals with peripheral neuropathyu.

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Your post sent me looking for neurotonic. I found some interesting things: 1. a web site http://www.examine.com gathers studies of supplements, etc that have some scientific basis, 2. neurotonic is a supplement, and 3. it has an ingredient that is from lion’s main mushroom. Examine lists 2 or 3 studies that are VERY limited in showing nerve regrowth.

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@jimhd

I do, primarily in my feet and ankles. Responding to the question asking if anyone deals with peripheral neuropathyu.

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Thank you for the link @bobe! Looks like a good reference site for additional info.

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Like some others in the group I have SFPN in my legs and feet which was diagnosed as idiopathic and possibly hereditary. I don’t have the severe pain but do have the numbness which has it’s own set of problems. When I received the diagnosis back in March from my neurologist he said that there are no topicals or medications that will help improve my situation but that the symptoms progression should be slow, etc.. I told the neurologist that I’ve had this for 15+ years (73 now) but he said I’ve probably had it longer than that. From other support groups I’ve learned the best thing to help yourself is to educate yourself as much as you can. A common thread I have found in many searches is nutrition – the first being when I read Dr. Terry Wahls story of her struggle with the symptoms of MS. I started trying to follow her recommended basic diet – no gluten, no sugar, no dairy, no processed foods, lots of organic veggies and fruits where possible, and meat without the chemicals (wild game, farm fresh, etc.) – http://terrywahls.com/about/about-terry-wahls/. I have been ‘loosely’ following her diet and I feel better but it hasn’t helped with the PN. I recently found a Facebook group that is very promising for helping with the pain/numbness symptoms – “The Solutions to Peripheral Neuropathy Pain & Discomfort” – (Closed Group – 1700+ members). They have put together a list of supplements that a significant number of members have found relief from pain and numbness. More information can be found by joining the group. It is a dynamic group which normally has a podcast every Wednesday and Sunday evenings that members can post questions to the group. There are several medical professionals in the group. I’ve ordered the supplements (most through Amazon.com) and plan to start them next week after I run them by my doctor. I will give an update in a month or so to let you know if it works for me.

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thank you so very much, you have been helpful. I will see if I can find them on facebook I am 64 and want to enjoy life.

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