Hi LisaPeach

Welcome to NT. Sorry to read you are dealing with such severe neuropathy.

You may want to look into Low Dose Naltrexone (LDN) which has previously been used to help treat chemo induced neuropathy.

Here's a couple of links to info:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/

http://www.lowdosenaltrexone.org/others.htm

Please be aware that if you think this may help you then you will have to stop all opiate based medication prior to starting it.

All the best for finding some effective treatment.

Hi, I lived with Burn/Tingle for 5+ yrs from Femoral Nerve Damage (thigh) from hip replacement.

I was talking to a naturopath at our holistic pharmacy and asked her what I could do if anything and she suggested 4 nerve supps.

FlexNP (Evergreen)
Nervagesic (Standard Process)

Inosine and Sphingolin and I chose
to take these 2 and did for 3 months and burn/tingle
is pretty much gone. Now and then I'll get a tingle
and probably more so when I'm more tired at night.

My thigh is still 80% numb, but the burn is about gone.

I'm open to try just about anything that someone suggests.

I am must say that i am intrigued by this article so wher can i find the stories of people with CIPN and are helped with this drug

Dear LisaPeach,

I also extend my sympathy to you.....

There might be a lot of good information for you on the RSD/CRPS site here....where posters are dealing with severe chronic pain. I'm not sure if you are seeing a specialist in pain management....but it does seem essential you do so now.

Also, what Zygopetalum wrote about a painful reaction to opiods seems to make sense...especially in the context that they are not the best option for neurological pain. Perhaps a PM specialist can help you sort this out and also suggest other treatments to both wean you off and more ably address the pain.

I truly wish you the best in finding help for your situation.

S

I have been under Pain Management for 7or 8 years with the same doctor.

I take Oxycontin ER, as well as Oxycodone for break thru pain daily For the past 4 years, I have been on the same dose. We are all different and what works for one might not work for another. My PM doctor has Never mentioned opioids not working for PN. These meds have made my days at least tolerable.

I am far from pain free; especially with the burning ankles/feet which is usually worsened by being on my feet for long periods. Sitting down with my feet raised on a couple of throw pillows for 15 - 20 min. usually takes the burning level down considerably.

Debi is on a very low dose of Morphine 15mg's, which may not be enough to cover her pain. Unfortunately, her PM doctor does not want to increase her medication to 30 mg's. This of course makes it difficult for her to know whether her pain could be reduced by upping her dose.

For many with PN; the only way to control their pain and lead a more productive life is with medication for pain even if it is opioids .


Gerry

The ONLY dr that said opioids do not work on nerve pain was my neuro.

I honestly don't know what I would have done without them. Before pain mgmt. I had only used hydrocodone that my PCP had been giving me, not the neuro I was seeing at the same time. Neuro knew I was taking them and never asked me to stop which was a good thing

When I first saw my pain dr we discussed the different options and agreed on BuTrans pain patch. Started at 5 mcg/hr and slowly increased to his limit of 20 mcg/hr. Along with the BuTrans I took oxycodone 10-325 up to 3 a day.

The BuTrans helped some but I was still not happy with my pain levels if I did 'anything' and I mean 'anything'. So I asked to change and I suggested the ER morphine. He started me at 15 mg but as Gerry said my dr doesn't want to increase that amount. I got so upset at the visit I never got a straight answer as to why he would not increase.

I'm very frustrated at this point and need to get myself together and go in with my own info and figure out exactly what is going on. I've always really liked this dr and he was really nice on Thursday but......I still don't understand why he won't increase to see if that might work.

Debi

Dear folks,

I learn so much here....why I love this site. My primary problems are autonomic and my pain, while spreading, is now (sort of) managed by nortripyline. Yet I know I need to be better educated about opioids. Of course I'm grateful for and defer to all here who have direct experience in this.

I had read that more conventional opioids are less effective against neuropathic pain than less conventional ones...like methadone and levorphanol. I'm wondering if people here have experience with these, as well as ketamine....which is often discussed on the RSD/CRPS forum here.

I also had never heard of hyperalgesia until it was mentioned on this thread.....but it does sound like something to be considered by LisaPeach.

I do appreciate all I am learning.....thanks everyone.

Sylvie

Debi,
My first PM was insistent that I get off the oxycodone I was on and stay with Cymbalta and Lyrica. I felt like bomb ai with Cymbalta. The Lyrica made my legs feel like I was getting multiple bug bites.

At my last appointment with him he went on and on about how being these pain meds weren't good because I would need them for too many years, blah, blah,.......but insisted both Cymbalta and the Lyrica were the way to go. After a month or two with him I started looking for a new doctor. I was not going to stay in "limbo".

I had been seeing an orthopedic doctor who referred me to my present PM doctor which was several years ago. My current PM is what he is all about....Pain Management.

I really don't get it with your PM doctor 15mg's Morphine is obviously too little to even tap into your pain. No wonder there are times it is difficult for you to get out of bed.

As I mentioned previously, I set my alarm and take my meds at least an hour before I am planning to get up.(I take my Oxo ER at regular scheduled times every day.) It is a rare time I have difficulty getting out of bed in the morning and that's only because some mornings, I'm too tired; not because of the pain.

I really hope one of your other doctors, including your Primary can refer you to a new PM doctor. It is best to have a referral from a doctor that knows you because so many PM's do not know if someone is doctor shopping just for the drugs.

You are not one to give up and that's a good thing.


Gerry

Hi jurgen

I haven't done too much searching for anyone on NT who takes LDN specifically for chemo induced PN but madisongrrl, who has Lyme disease with PN symptoms, is taking it. Here's links to a couple of her threads. If you search 'naltrexone' you may find more.

http://neurotalk.psychcentral.com/thread230056.html

http://neurotalk.psychcentral.com/thread230056.html

I've been researching it for possible use with autoimmune related PN for myself. I'm going to be requesting approval from my endocrinologist soon to try it. I would suggest doing as much research as you can to see if it might be relevant to your particular situation. Be aware there is a lot of hype on the net as well as factual information.

It's not a miracle drug but for those of us who are unable to take any sort opiates it may be an option. From what I've read it can provide about 20-30% pain reduction. Not a lot for sure but better than nothing - and it's not addictive and has few side effects. .