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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.

Profile picture for citylady
citylady | @citylady | Jun 27, 2016

Good Afternoon! I have been dealing with pn since 2009, when my immune system went cold and I got shingles. Mine feels as if a collection of mice have been dipped in hot sauce and wrapped in barbed wire and let loose under my skin. Very little seems to alleviate the pain, which in my case is heavily dependent upon the weather. I notice that you began writing in April - have you come across anything to share with us??

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1 reply
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citylady | @citylady | Jun 27, 2016
In reply to @johnbishop "About 10 years ago when I had my doctor how they can tell if I have..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I've come to regret it a little since it's gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I'm waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it's associated with pre-diabetes but I'm not buying that diagosis just because I've had it for a long time and do not have diabetes. I think it's related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I'm really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening...praying that you all will find some relief.

Jump to this post

Autoimmune failre is the prime suspect for me also. Prior to this neuropathy, I had been in the hospital for a week with a severe sinus infection which migrated to my lungs. I was put on large doses of prednisone......and there it was...

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Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 27, 2016
In reply to @briansr "Yes, I believe I am.If I move my toes it feels like there is mud with..." + (show)
Profile picture for briansr @briansr

Yes, I believe I am.If I move my toes it feels like there is mud with rocks mixed in. It's moving up my feet and ankles, numbness, feet feel cold but there're nice and warm. Sometimes they are warm but I always have a burning feeling in both feet. I've tested myself with a sharp item, (shouldn't do this), and I have no feeling from the toes up to the beginning of my ankles, both feet. When I walk it feels like I'm walking on rocks, with and without shoes. A lot of leg pain and I used to have Restless legs so bad I would be in the bathtub, super hot water, 6 to 8 times a night. Had a sleep study 15yrz or so ago and they said my legs went crazy. They were all over the place. It took me 20 yrs and a lot of trials but I found a med that works pretty good. I've had numerous eeg or emg's, with the needles, results were not good for legs and arms. The last one the dr said it was caused by my sarcoidosis, I've had eight back and neck surgeries which is what I always blamed. He said no. I have 5 immune diseases, inherited from my Mom. Needless to say I'm 60 now and have battled this crap since 1983. I'm tired. I apologize for running my 88mouth, I'm usually on the chronic pain group, but I've been down for about 3 months and am just now getting back on. I saw your post and thought we had something in common. Does it sound close to your problem? I don't know but would like to hear your story. My user name is briansr. Cl9ck on my namm and we can talk privately, or just pozt, I should catch it!! briansr

Jump to this post

Welcome back @briansr. So glad you're able to rejoin the conversations on Connect!

REPLY
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Mary | @mfobrien36 | Jun 27, 2016
In reply to @johnbishop "About 10 years ago when I had my doctor how they can tell if I have..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I've come to regret it a little since it's gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I'm waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it's associated with pre-diabetes but I'm not buying that diagosis just because I've had it for a long time and do not have diabetes. I think it's related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I'm really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening...praying that you all will find some relief.

Jump to this post

I sent for an oil concoction - frankincense, myrrh in a purified coconut oil... cost $19 for about 3 oz - don'r know yet whether it will help my PN feet. My knees and ankles are all messed up too - so using it on feet, ankles and knees. I've been using it for about a week now and can't really tell that it's helped. It's so hard to figure out what to do when there are so many well-meaning people/doctors of various skill levels and/snakeoil sales promotors. If it wasn't such a nasty condition, one could call it a circus - in fact, I think I will call it a circus. I'm getting the impression that there are so many forms and causes of these symptoms - all somewhat different, that it may take the medical community to get in there and determine if these are all the same thing or if there are different causes, symptoms and treatments/cures that can be used for whatever type of PN is camping on your body.

REPLY
Profile picture for JohnWBurns
JohnWBurns | @johnwburns | Jun 28, 2016
In reply to @citylady "Good Afternoon! I have been dealing with pn since 2009, when my immune system went cold..." + (show)
Profile picture for citylady @citylady

Good Afternoon! I have been dealing with pn since 2009, when my immune system went cold and I got shingles. Mine feels as if a collection of mice have been dipped in hot sauce and wrapped in barbed wire and let loose under my skin. Very little seems to alleviate the pain, which in my case is heavily dependent upon the weather. I notice that you began writing in April - have you come across anything to share with us??

Jump to this post

Everybody's experience is a little different with this syndrome so there isn't going to be a magic bullet. In my case the intensity of the pain tapered off as the nerves apparently died off, or it stopped progressing. You might check online for sites that are specific to PN like https://www.foundationforpn.org/ Also, some major clinics and universities like the University of Chicago and the Cleveland Clinic have sites that discuss it. There is unlikely to be an quick fix although everybody wants the same thing, a cheap over-the-counter solution. As far as over-the-counter stuff, alpha lipoid acid might help some, but everything has side effects. In my case, I just keep walking, mostly to steady my gait. Hope this helps.

REPLY
Profile picture for JohnWBurns
JohnWBurns | @johnwburns | Jun 28, 2016
In reply to @johnbishop "About 10 years ago when I had my doctor how they can tell if I have..." + (show)
Profile picture for John, Volunteer Mentor @johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I've come to regret it a little since it's gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I'm waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it's associated with pre-diabetes but I'm not buying that diagosis just because I've had it for a long time and do not have diabetes. I think it's related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I'm really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening...praying that you all will find some relief.

Jump to this post

All of these snake oil vendors sell a quick fix when in fact there isn't any. I've gone through a bunch of alternative therapies for various things and while some might have some value for some things, there is no fix out there for PN that I can find. Before you buy any of this stuff check reputable sites for any recommendations. MD Anderson has collected a lot of info about alternative medicines at https://www.mdanderson.org/education-and-research/departments-programs-and-labs/programs-centers-institutes/integrative-medicine-program/reviews-of-therapies/index.html
Remember that these therapies are unregulated so you may be paying for nothing. On the other hand, if you stumble on something that gives you a little relief research it to make sure its safe. Good luck.

REPLY
Profile picture for John, Volunteer Mentor
Mentor
John, Volunteer Mentor | @johnbishop | Jun 28, 2016

I agree with John Burns. I have PN but without the pain. I just have the numbness from my feet to just below my knees. I just started being proactive early this year after many years of living with it. I have tried pretty much all the "pain" cremes and lotions on the market without any success. Also tried the essential oils mixtures for neuropathy without any success. After meeting with a neurologist in March and getting a diagnosis - small fiber length-dependent peripheral neuropathy he told me it looks to be hereditary or idiopathic. He also told me that a topical treatment - lotions, etc probably would not make any difference for the numbness. I also have polymygelia rheumatica but it has been in remission for 5 or 6 years. I belong to the Minnesota Neuropathy Association and at their meeting back in March I talked with a few members who were using a tens unit for treatment with some success - Zopec DT-1200. I bought one and have been using it for about a month and can feel a little difference but it is not the magic bullet I thought it might be. I'm still hopeful because it is a very flexible device with many different settings that I can play with to see if I can improve the outcome of using it. Several members have had positive results with the Realief Center Clinic in the Minneapolis area but I really don't want pay the money for something that may not work for me. So, I just keep putting one foot in front of the other and try to stay upright!

REPLY
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Gary, Alumni Mentor | @gman007 | Jun 28, 2016
In reply to @johnwburns "I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up..." + (show)
Profile picture for JohnWBurns @johnwburns

I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren's syndrome.  I take gabapentin and duloxetine but pain isn't the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you'll have better luck with the chemo induced version.

Jump to this post

If you discover anything that helps with the numbness, I would be very interested in your thoughts. I am diabetic and have just recently started having the numbness in my hands. I was prepared for the prickly type of symptom, but not numbness. It is very annoying and a bit unnerving. Thank you.

REPLY
Profile picture for briansr
briansr | @briansr | Jun 29, 2016
In reply to @briansr "Yes, I believe I am.If I move my toes it feels like there is mud with..." + (show)
Profile picture for briansr @briansr

Yes, I believe I am.If I move my toes it feels like there is mud with rocks mixed in. It's moving up my feet and ankles, numbness, feet feel cold but there're nice and warm. Sometimes they are warm but I always have a burning feeling in both feet. I've tested myself with a sharp item, (shouldn't do this), and I have no feeling from the toes up to the beginning of my ankles, both feet. When I walk it feels like I'm walking on rocks, with and without shoes. A lot of leg pain and I used to have Restless legs so bad I would be in the bathtub, super hot water, 6 to 8 times a night. Had a sleep study 15yrz or so ago and they said my legs went crazy. They were all over the place. It took me 20 yrs and a lot of trials but I found a med that works pretty good. I've had numerous eeg or emg's, with the needles, results were not good for legs and arms. The last one the dr said it was caused by my sarcoidosis, I've had eight back and neck surgeries which is what I always blamed. He said no. I have 5 immune diseases, inherited from my Mom. Needless to say I'm 60 now and have battled this crap since 1983. I'm tired. I apologize for running my 88mouth, I'm usually on the chronic pain group, but I've been down for about 3 months and am just now getting back on. I saw your post and thought we had something in common. Does it sound close to your problem? I don't know but would like to hear your story. My user name is briansr. Cl9ck on my namm and we can talk privately, or just pozt, I should catch it!! briansr

Jump to this post

So glad to be back Ms. Young. Right now still fighting a lot of battl4s on all fronts. Spinal, 3+ months and still going on one of my immune diseases. Low grade fevers to where I'm burnig up, and a bunch or problems with my pain doc getting scare of DEA. All drs will start soon even though nothing has passed at the stse or federal level,.YET. Look out for September and November. At the federal level. States will follow suit. Get back on when up and mobile. Nice hearing from somebody.out there. I feel like I'm fighting alone but I know that is not true. Not enjoying any part of life right now but I have faith. This whole year has just been a major bummer. Talk to you soon. briansr

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