Are there any neuropathy patients here?

[Irishonly]

I have had it since chemo.

[mopinko]

1. a teenie weenie one.

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]

6. I have never been given lyrica

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]

15. I am on no medication for it

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

[CountAllVotes]

2. Yes, I have severe neuropathy

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.

[Irishonly]

3. I wear the duragesic patch

I have been having fits with the neuropathy lately.

[CountAllVotes]

4. I tried that briefly

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]

5. My body will not tolerate methadone or morphine

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]

12. There may be other avenues available to you... mind you this

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]

7. i gained some weight at first with it.

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]

8. Oh, hell, yeah

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]

9. It sounds like Charcot Marie Tooth disease.

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]

10. I have a failed fusion in my lower back

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?

[Irishonly]

11. Mine is mild compared to what you go through

Here is a link about Charcot Marie Tooth

http://www.ninds.nih.gov/disorders/charcot_marie_tooth/detail_charcot_marie_tooth.htm

[rl6214]

13. Type one diabetic for 30 years and dealing with nueropathy for the past 11

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

[Irishonly]

16. How does it work for you?

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]

17. I started on neurontin years ago when first diagnosed but it didn't work for long

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]

20. When MSN had groups, I belonged to a neuropathy group

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.

[NightWatcher]

18. I was recently diagnosed with dermatomyositis

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]

19. I am sorry to hear that.

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.

[Irishonly]

22. I am sorry

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.

[Irishonly]

24. Nothing does

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]

25. I am

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.

[pareshaegis]

26. Spam deleted by gkhouston (MIR Team)

[greatauntoftriplets]

27. Me.

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]

28. I am sorry

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]

29. Thanks, Irishonly.

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]

30. Can you wear socks with your shoes?

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]

31. Yes, I'm in Chicago and have to wear socks in cold weather.

Last edited Mon Nov 26, 2012, 09:52 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]

32. I sent you an email

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.

[greatauntoftriplets]

33. Thanks very much.

I appreciate your input.

[KC]

34. I was looking on Amazon

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]

35. My daughter gave me some wool socks with arch supports for Christmas

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.