Hello,
Used the ReBuilder frenquently 5 years ago, now I put the pads on the lower back when I overdoit on home projects. Lyrica, Tramadol, Vicodin, Cymbalta, Neurotin and a few other have been tried and discontinued over a period of time. Started Methadone 2 years ago 10mg 3 times a day, now its 5mg 3 times its the best IMO, what works for some is trash for others. I have learned more about PN on this forum than from a doctor. Since there is no cure for PN pain control is of the upmost importance.

[QUOTE=JoanB;677153]
The last doc I saw was the worst: on my first visit, she tried to force me into a group PT/OT and group talking therapy program where there would most likely be no PN'ers but me. When I asked her to give me just one specific example of how any of that would help me, she couldn't, got mad, and refused to prescribe anything for me, even Elavil, which is all I was asking for. Oh, and she was a pain management specialist.

*** When I went through my final bout of problems with my former primary medical provider she sent me to the Kaiser Pain Clinic doc for a "consult". Last summer I attended the Pain Clinic's 8 week pain management course and learned a lot of new and different ways to self-manage pain.

*** But sitting down with their new doc???

*** She was the [I][B]only[I][B] medical doctor in the program. She was new (had arrived in the last few months) and was a former addiction doctor. In the consult we spent 50%+ of the time discussing the likelihood or probability of me being (or becoming) an addict. I think it is just easier for her to put me in the "addict" box than to really work with me.

*** Other than Lidoderm (3 patches daily!!), I am not taking any opiates. I may check into having Vicodin on hand, but I haven't even done that yet. I don't think the morphine CR was very useful (at least at the strength I was taking it -- 60 mg daily) and am not ready to try it again. I am curious about the Fentenyl patches....

Cowboy

CB

On the contrary, if you knew my doctor, you would know that he has bent over backwards to do everything in his power to help me. I am waiting for him to call back to see what else, if anything, he can give me for pain. I don't want to be on something that is extremely addictive, but Tylenol with codeine is not working anymore.
I am glad to hear that the patch could be worn anywhere--the Lidoderm patches I had before had to be put on my feet and they were very painful.
The biggest thing right now is the cost. I am unable to work... and my mom is a single mom who can't even pay all the bills every month... so whatever medicine we end up trying, it has to be decently affordable. That obviously is not anything that anyone on here can help me with, since it depends on my insurance... but that will be the deciding factor...I can't afford $100 a month or $400 a month etc..
But I am very thankful for your time and advice.. and I apologize if it came off any other way. If you knew my doctor, you would know that he truly has my best interest at heart. The problem is.... if neuropathy is just acquired, (I am told) it is usually there for life. However, if it due to having GBS, it usually goes away (though, mine is such a severe case that my neurologist isn't sure it will). So my doctor isn't so willing to put me on such a highly addictive drug for a what is meant to be a short term problem. This isn't supposed to be a lifetime thing--even though is may be in the end.

Yikes. I'm sorry you had such a bad experience with the patch! That doesn't sound good.
I have already tried Vicodin, and it didn't help me at all. I had been on Tylenol with Codeine #4 but wasn't getting much relief, so I tried the Vicodin... and got even less relief (well, no relief at all) so I switched back to the Tylenol.
Thanks for the suggestion, though... I appreciate everyone who has taken time to try to help me out!

Not all people with PN have pain in both hands and feet--I've read a lot of stories of people who have just one or the other.

I have already had a second opinion... I was diagnosed at Mayo Clinic... and the diagnosis was confirmed by my neurologist.

I've never heard of Methadone before today... but I'm still waiting to hear back from my doctor on possible medicines... if any...

I think, Sarah, you are misinterpreting the terms.

Certainly you have A neuropathy... but there are over 100 causes of neuropathies. Things that act globally in the body, like diabetes, or toxins, or autoimmune, GBS, or deficiencies attack many sites not just one.
Your EMG showed large fiber involvement. But the EMG cannot tell anyone WHAT is causing that.

You came here initially saying you had a neuropathy from your bariatric surgery. You said you were not absorbing your vitamins etc. Then you said they were tested as "normal". So I have lost track of your situation and am getting confused, including the later information about your back and arthritis at your young age.

Mayo is not perfect. Many have come here from Mayo, and found it less helpful than anticipated.

I certainly do hope your issues clear up, and your pain starts to recede. Sometimes people do get better.

At your age doctors are hesitant to offer opiates. There are other pain management techniques, including SCS devices and pain pumps.
Here is our forum on that subject:
http://neurotalk.psychcentral.com/forum118.html

Asking doctors, as Joan has pointed out, about "stronger" drugs, is sometimes met with them closing down, and making assumptions about your motives. This happens with many many patients. Many neurologists have the personality of a "rock", and are not very compassionate about how you feel and suffer. We've had many discussions about that subject here!

I realize there are many many causes of neuropathy. I have been tested for MANY MANY MANY of them. I do not have diabetes. I have been tested for many autoimmune diseases. I have not had a sip of alcohol in my life. The only thing that was wrong in all the testing was that I was deficient in my vitamins--because of the GBS. My levels are now back to normal, but the damage has been done. Just because the levels are back to normal, doesn't mean the neuropathy magically goes away. My neurologist said that the neuropathy doesn't just go away when the levels are back up where they should be.

By all means, if you have other suggestions (or anyone out there) of what else could be checked, please do let me know.. but I've had every test that we know of... and nothing else has come up so far.

Cowboy - you said: "I am curious about the Fentenyl patches...." I have detailed my experience using the Fentanyl patches. Simply said - they work for me and has made my last 8½ yrs a dream world compared to my first 14 years of this horrific pain caused by Peripheral Neuropathy. It's a fact that these patches do not work for everyone, but then... what does? Based on my experience I think giving this medication a try is certainly worthwhile. I do recommend that the patient give the medication a fair trial...work with your doctor by not exaggerating the severity of the pain and using the medication only as directed.

I'm aware that some physicians have been busted by the DEA and this has made most doctors unwilling to prescribe an opiate for anyone regardless of the patient's severity of pain or it's cause. The problem is - the pain patient is the one who suffers. How can a physician whose credo is: "First, do no harm" and then turn around and refuse to treat his patient who is in terrible pain and then not even refer the patient to someone who does treat pain.

Anyway, there are physicians who realize that pain is indeed a legitimate medical condition and deserves the best treatment available. Finding these doctors can be difficult so never...ever give up. Cowboy, I wish you the best and hope you find pain relief soon.

WOW - we've come a long way from "Looking for a used Rebuilder".

The peripheral nervous system can regenerate. And it does.

The only time it cannot is when the cells themselves totally die.
When that happens there is no more pain, but numbness may remain. There may be residual central pain, like phantom limb pain that amputees feel.

I had all the nerves on the top of my foot damaged in my left foot, after a having a tumor removed. My foot was numb for about 20 yrs...but those nerves grew back finally.

All the text books doctors use contain that information.
example:
http://emedicine.medscape.com/article/1270360-overview
This is what happens when B12 gets very low for a long time:
http://en.wikipedia.org/wiki/Subacut...of_spinal_cord
People with this lose vision and other abilities and often end up in wheel chairs (if they don't die first)

Even these people improve over time, and rose, who used to post here on B12 was a prime example.

Here is her website:
http://sites.google.com/site/roseannster/home

I am dealing with so much pain right now that I didn't understand any of what I just read... no idea what you are talking about, so I will read this again later...

A family friend (who used to be a nurse) comes to stay with me two days a week so my mom can go to work... and she is here, so I am going to go visit with her for a bit and then I will get online later today. I still haven't heard back from my doctor--he usually doesn't call back until after 5 pm when he is done seeing patients... so we'll see. I will reread this later though and look at the links and see if I can make sense of it.

All I know is that according to my doctors, this stems from the surgery... and though my levels are back up to normal, the pain and numbness may continue for awhile or possibly for life. Thanks for your replies, as always.