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Are there any neuropathy patients here? (Original Post) Irishonly Feb 2012 OP
a teenie weenie one. mopinko Feb 2012 #1
I have never been given lyrica Irishonly Feb 2012 #6
I am on no medication for it Irishonly Jul 2012 #15
Yes, I have severe neuropathy CountAllVotes Feb 2012 #2
I wear the duragesic patch Irishonly Feb 2012 #3
I tried that briefly CountAllVotes Feb 2012 #4
My body will not tolerate methadone or morphine Irishonly Feb 2012 #5
There may be other avenues available to you... mind you this Former_DU_Member Feb 2012 #12
i gained some weight at first with it. mopinko Feb 2012 #7
Oh, hell, yeah libodem Feb 2012 #8
It sounds like Charcot Marie Tooth disease. zanana1 Feb 2012 #9
I have a failed fusion in my lower back libodem Feb 2012 #10
Mine is mild compared to what you go through Irishonly Feb 2012 #11
Type one diabetic for 30 years and dealing with nueropathy for the past 11 rl6214 Jul 2012 #13
How does it work for you? Irishonly Jul 2012 #16
I started on neurontin years ago when first diagnosed but it didn't work for long rl6214 Jul 2012 #17
When MSN had groups, I belonged to a neuropathy group Irishonly Jul 2012 #20
This message was self-deleted by its author KC Jul 2012 #14
I was recently diagnosed with dermatomyositis NightWatcher Jul 2012 #18
I am sorry to hear that. Irishonly Jul 2012 #19
This message was self-deleted by its author silentwarrior Oct 2012 #21
I am sorry Irishonly Oct 2012 #22
This message was self-deleted by its author silentwarrior Oct 2012 #23
Nothing does Irishonly Oct 2012 #24
I am KC Oct 2012 #25
Spam deleted by gkhouston (MIR Team) pareshaegis Oct 2012 #26
Me. greatauntoftriplets Nov 2012 #27
I am sorry Irishonly Nov 2012 #28
Thanks, Irishonly. greatauntoftriplets Nov 2012 #29
Can you wear socks with your shoes? Irishonly Nov 2012 #30
Yes, I'm in Chicago and have to wear socks in cold weather. greatauntoftriplets Nov 2012 #31
I sent you an email Irishonly Nov 2012 #32
Thanks very much. greatauntoftriplets Nov 2012 #33
I was looking on Amazon KC Jan 2013 #34
My daughter gave me some wool socks with arch supports for Christmas Irishonly Jan 2013 #35

mopinko

(71,713 posts)
1. a teenie weenie one.
Wed Feb 1, 2012, 10:39 PM
Feb 2012

in my index finger of my right hand. leftover from a herniated disc.
do you take lyrica? i have fibro, and found out it helped me when they gave it to me for the finger. didn't do too much for the finger, but....

Irishonly

(3,344 posts)
6. I have never been given lyrica
Thu Feb 2, 2012, 11:39 AM
Feb 2012

The first medication I was given was neurotin which caused more problems than it was worth. I have been in pain management for years.

Irishonly

(3,344 posts)
15. I am on no medication for it
Sat Jul 28, 2012, 11:25 PM
Jul 2012

None of it has ever worked for me and the side effects were horrible.

CountAllVotes

(21,046 posts)
2. Yes, I have severe neuropathy
Thu Feb 2, 2012, 09:51 AM
Feb 2012

It is not getting any better either.

I've tried many drugs. Lyrica was ok for awhile but I could see I'd need a huge dose of it for it to continue to work. Lyrica has a nasty side effect for some folks out there and that is weight gain. I don't need to be gaining a bunch of weight with this problem.

As far as neuropathy goes, one of the best drugs out there for it is methadone. Some doctors are reluctant to RX methadone for many reasons. Mine won't RX it because it is very hard on the liver.

So as it now stands, I use opiates for the pain from this condition which gets much worse when I am tired/stressed/ill and age is not helping a tiny bit either.

I hope you find some relief and a doctor that cares and wants to help you.



CountAllVotes

(21,046 posts)
4. I tried that briefly
Thu Feb 2, 2012, 10:24 AM
Feb 2012

I became frightened when I found out that if something touches it (like one of my cats), death could be a result.

Freaky stuff those patches. I didn't notice they helped much anyway.

I've had better luck with morphine to be honest w/you. *sigh*

Irishonly

(3,344 posts)
5. My body will not tolerate methadone or morphine
Thu Feb 2, 2012, 11:37 AM
Feb 2012

The patch was a last resort. My husband changes them with disposable gloves and they old patch is put into the envelope of the new one and taken directly out to the trash can. I have often thought there should be a container you should put them in and take them to the lab like you do with needles. the patch was not a choice I would have made but I had no choice. I was so sick on the others and my blood sugar would bottom out. Why I tolerate the patch is a mystery to me.

I also have Reiki treatments and have learned to meditate which also helps. It took a long time for the doctors to conclude my neuropathy came first and was chemo related. My diabetes has been under control for years and my neuropathy has gotten worse. I was diagnosed with neuropathy almost a year before the diabetes reared its ugly head.

 

Former_DU_Member

(33 posts)
12. There may be other avenues available to you... mind you this
Tue Feb 28, 2012, 08:22 PM
Feb 2012

is a very recent paper, however there are others yet at Pubmed.

http://www.ncbi.nlm.nih.gov/pubmed/22329607
Drugs R D. 2012 Feb 13. doi: 10.2165/11599200-000000000-00000. [Epub ahead of print]
Combination of Alpha Lipoic Acid and Superoxide Dismutase Leads to Physiological and Symptomatic Improvements in Diabetic Neuropathy.
Bertolotto F, Massone A.
Source

Neurophysiology Laboratory, Spine Unit at Santa Corona Hospital, Pietra Ligure, Savona, Italy.
Abstract

Background and Objective: The management of diabetic neuropathy is still a challenge for physicians. The aim of this study was to assess the efficacy of a new combination of alpha lipoic acid and superoxide dismutase for the treatment of diabetic neuropathy. Methods: The setting of this study was ambulatory (outpatient) care. A prospective, non-randomized, open-label study was conducted in 50 patients with diabetes mellitus and with a deficit in both motor and sensory nerve conduction.

Treatment was with a new combination of alpha lipoic acid and superoxide dismutase (ALA600SOD®) for 4 months. Electroneurographic parameters and perceived pain were assessed at baseline and after treatment. Results: After 4 months of treatment, patients significantly (p < 0.001) improved their electroneurographic parameters and their perception of pain. Best improvements were observed in sensory nerve conduction.

Conclusion: The combination of two powerful antioxidant agents leads to improvement in both subjective and objective parameters in patients with diabetic neuropathy. New profitable directions for investigations are opened for a non-invasive treatment of diabetic neuropathy in the future.

mopinko

(71,713 posts)
7. i gained some weight at first with it.
Thu Feb 2, 2012, 11:55 AM
Feb 2012

but i figured out that it was behind my cravings for sweets, especially for ice cream, and was able to screen those out. after not giving in for a few weeks, they subsided.
every drug i try seems to flick that switch, tho. luckily i have managed to keep it steady.

libodem

(19,288 posts)
8. Oh, hell, yeah
Fri Feb 3, 2012, 08:49 PM
Feb 2012

I have it in my lower extremities. Drives me nuts with the tingling and buzzing. Feels like my feet are asleep more than it hurts, when my feet are up. Standing and walking hurt in lots of different places and ways.

zanana1

(6,284 posts)
9. It sounds like Charcot Marie Tooth disease.
Thu Feb 9, 2012, 09:23 AM
Feb 2012

I've had it for a long time. It begins with the ankles, then the feet and lower legs (I wear ankle/foot orthotics). Now, after many years, it's getting into my hands. It's been a slow progression, and it's nothing that's going to kill you, but it can be pretty annoying. I have severe lower back pain and I'm on Vicodin. Any other pain killer freaks me out. I have hammer toes and had surgery on my right foot last spring. This spring, it'll be the left foot. Lots of fun.

libodem

(19,288 posts)
10. I have a failed fusion in my lower back
Thu Feb 9, 2012, 12:02 PM
Feb 2012

I had a dural tear in the hospital after surgery that left
my sciatic nerve all hinked up. I quit my lyrica cuz I'm running out of money. It was 250.00 a month plus my norco and a muscle relaxer, on top of that.

Some times it feels like frost on the outside skin. Starts with a tingle in one spot and spreads all over up my legs.

Does the tooth part have any thing to do with it?

 

rl6214

(8,142 posts)
13. Type one diabetic for 30 years and dealing with nueropathy for the past 11
Fri Jul 27, 2012, 11:02 PM
Jul 2012

Currently taking 600 mg Lyrica daily to deal with it. Doc says I am maxed out.

Irishonly

(3,344 posts)
16. How does it work for you?
Sat Jul 28, 2012, 11:27 PM
Jul 2012

Years ago befor Lyrica they used to give Neurotin. It is for elipisy but some neuropathy patients found relief. I didn't. I hope it works for you.

 

rl6214

(8,142 posts)
17. I started on neurontin years ago when first diagnosed but it didn't work for long
Sun Jul 29, 2012, 05:39 PM
Jul 2012

the lyrica works for the most part but sometimes it's not until 3-4am that I am able to get to sleep because of the burning and shooting pain.

Irishonly

(3,344 posts)
20. When MSN had groups, I belonged to a neuropathy group
Tue Jul 31, 2012, 06:36 PM
Jul 2012

Some people used to stick their feet in ice or wrap ice packs around where the neuropathy pain was the worst. Cold sends me through the roof so I never tried it. I am so sorry about the pain. I think I have almost worn a path from walking. I have several places I try to sleep.

Response to Irishonly (Original post)

NightWatcher

(39,358 posts)
18. I was recently diagnosed with dermatomyositis
Mon Jul 30, 2012, 01:54 PM
Jul 2012

and I was tested in the hospital for nerve damage. My legs had a lot of muscle wasting and nerve damage as a result. Now my strength has returned but I have numbness, burning, tingling...daily. The worst part is when it itches internally, I cant scratch it. I'm on muscle relaxers and oxy for it. I'll survive, hopefully because when the myositis is controlled I am able to regain strength, but it was scary for a bit when I had quite a bit of peripheral neuropathy and nerve damage on top of muscle wasting. I couldnt lift my hands above my head, stand from a seated position, move my legs to drive, and I also had trouble swallowing.

Irishonly

(3,344 posts)
19. I am sorry to hear that.
Mon Jul 30, 2012, 06:18 PM
Jul 2012

Those itches internally can drive a sane person insane. I have gotten weaker over the years. I was walking my two dogs last night and ended up eating grass. The male pulled me like I was a rag doll. I am hurting like the devil today. Parts of my body are hurting and I thought all of the nerve endings were gone.

Response to Irishonly (Original post)

Irishonly

(3,344 posts)
22. I am sorry
Thu Oct 18, 2012, 06:38 PM
Oct 2012

I had to have my diabetic foot exam a couple of weeks ago. When they do the pin or whatever it is sliding test I felt nothing until it was past my knees. My diabetes has been under control for years so that's when the doctors decided the chemo probably caused the neuropathy.

I cannot handle cold even when I feel like my hands and legs are on fire. I will cry. I find it strange that it hurts so badly when the nerve endings are supposedly dying.

How do you deal with the neuropathy? Do you take specific medications for it? I remember being give neurontin and then finding out the side effects were worse than the disease.

Response to Irishonly (Reply #22)

Irishonly

(3,344 posts)
24. Nothing does
Fri Oct 19, 2012, 09:24 AM
Oct 2012

There are days where you can function when the pain isn't too bad for a neuropathy patient and then there are days when you function because of will power.

KC

(1,995 posts)
25. I am
Wed Oct 24, 2012, 05:36 AM
Oct 2012

taking Gabapentin and it does help mine some but I don't like the weight gain. My Dr just started me on a small dose of Amitriptyline at bedtime and that really helps me sleep at night but for the last few days I don't sleep and then I'm so sleepy during the day! I can't win
I also take Tramadol for pain.

greatauntoftriplets

(176,786 posts)
27. Me.
Sun Nov 25, 2012, 03:06 PM
Nov 2012

I was recently diagnosed with it after a serious illness that put me into multiple organ failure for a time. It's making me crazy. Because my kidneys are "fragile", there's really nothing I can take to relieve the symptoms.

Irishonly

(3,344 posts)
28. I am sorry
Sun Nov 25, 2012, 10:35 PM
Nov 2012

Have the doctors told you if it will be permanent or temporary? Some people get better albeit a few number. Does hot or cold seem to trigger the symptoms? I know if my feet get too cold I have hell to pay. My daughter found some slippers you can microwave and they have been a life saver.

greatauntoftriplets

(176,786 posts)
29. Thanks, Irishonly.
Mon Nov 26, 2012, 07:35 PM
Nov 2012

It's permanent. The cold gets to me and those slippers sounds great. Unfortunately, I have to wear shoes to work.

I'm not certain about heat, because I spent most of the summer indoors -- either in the hospital or recuperating at home.

Irishonly

(3,344 posts)
30. Can you wear socks with your shoes?
Mon Nov 26, 2012, 07:59 PM
Nov 2012

It sounds like a dumb question but I have talked to a lot of neuropathy patients the last twelve or so years and sometimes I am amazed at the great finds I have been told about. I will check because I know I wear diabetic socks that help with circulations. Why it helps my neuropathy I do not know but you learn not to question help when it comes, no matter what it is.

Hang in there. My neuropathy came from chemo and I was told it would go away. I then became diabetic and even though it is under control my neuropathy has gotten worse. It it was not for the pain some days I wouldn't think I have legs and feet. Let me know about socks and I can email you with some info. I quit caring about style a long time ago.

greatauntoftriplets

(176,786 posts)
31. Yes, I'm in Chicago and have to wear socks in cold weather.
Mon Nov 26, 2012, 08:18 PM
Nov 2012

Last edited Mon Nov 26, 2012, 08:52 PM - Edit history (1)

I don't wear them at home, though. I found some very soft wool socks and they don't bother my feet although the shoes do. I've seen diabetic socks online and will consider those.

Neuropathy is a horrible, painful condition and my heart goes out to all who suffer with it. Thanks for your words of encouragement. They mean a lot.

On edit: I don't care about style either. LOL, my shoes are Keds sneakers.

Irishonly

(3,344 posts)
32. I sent you an email
Mon Nov 26, 2012, 09:58 PM
Nov 2012

I will send some more tomorrow. I start getting a lot less focused this time of night. I have three dogs and we get up about five in the morning.

KC

(1,995 posts)
34. I was looking on Amazon
Wed Jan 9, 2013, 01:01 AM
Jan 2013

yesterday at the different slippers and was wondering if they would help. Maybe I will order some to try. No matter what I try my feet (and legs) always seem to be cold. The cold hurts but I also can't stand for anything to touch them like a sheet or a blanket. Can't win lol

Irishonly

(3,344 posts)
35. My daughter gave me some wool socks with arch supports for Christmas
Wed Jan 9, 2013, 11:13 PM
Jan 2013

She is up north for a week but when she gets back I will ask her where she got them. If I put them on after I get out of the shower my feet stay warm all day and that is saying something. The socks seem to support my feet and legs and they are so soft.

Sometimes I use a blow dryer and warm up my sheets at night. My grandmother used to use a hot water bottle but I bought her a blow dryer. My family thought I was nuts but she loved it. She kept it by her bed and if she got cold and stared hurting she used it. It may work for you. I have no idea if it a psychological relief or not but I am to the point if it doesn't hurt, it may help.

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