NeuroTalk Support Groups - Looking for a Used ReBuilder

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- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Looking for a Used ReBuilder (https://www.neurotalk.org/peripheral-neuropathy/128210-looking-rebuilder.html)

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.

Quote:

Originally Posted by DanP (Post 677052)

Well, I tried but you seem to put up too many walls. First is your doctor - "but I got the Tylenol with Codeine #4 from my family doctor. He doesn't want to move me up to Oxycodone because it is so highly addictive". This is the kind of doc I was talking about - he really doesn't want to treat your pain. It appears he's more concerned about himself than you. Next, it is true that you've not been treated with Oxycodone but you could start the patch at the 25 strength and titrate from there. Then you said: "I also don't want to become addicted". You won't be provided the following: (1) that you do indeed have constant moderate to severe pain and (2) that you use the patches EXACTLY as prescribed by what ever physician RXes it for you. And next you said: "But either way--I don't do well with patches". Whataya mean? Are you saying you can't even use a bandaid? Are you alergic to the adhesives or what? Then you asked where does one put these patches. They can be placed anywhere. The medication in these patches are not used for localized pain. The fentanyl enters your blood stream and circulates throughout your body and delivers pain relief in that fashion. You can put the patches anywhere...your shoulders, chest, back, thighs...anywhere. I put them on my left shoulder where my vaccination scar is and I alternate from one shoulder to the other and I get by just fine on my shoulders. If your skin is sensitive then try them on the shoulder, then the back, then the chest, then the abdomen, then back to the shoulder, etc. If you really have the pain you describe then you need to bite the bullet and try something that really works on pain. There is no magic in any of that stuff your presently using - it's just not strong enough. Finally, the cost. Yes this is expensive and there is no way that I know of to get around this but in my many years of life I have learned that if there is a will there is almost always a way. There is one pain reliever that's literally dirt cheap and it's Methadone. It's a darn good pain reliever but lots of doctors (like yours), refuse to prescribe it because they think of it as a drug to help get addicts off the drugs they are addicted to. But, yes this is also a narcotic and many PNers use it successfully. It is or was a popular street drug...I don't mean made on the street...just liked by addicts. It is also used to help addicts come off the drugs they are addicted to but it's primary purpose is to relieve pain and it can do that without you becoming addicted. Addiction occurs almost exclusively when the patient abuses it.

Regarding addiction check out this:
http://www.letstalkpain.org/real_story/addictions.html AND
http://health.msn.com/health-topics/...0195150&page=1 BE SURE AND READ ALL 7 OF THESE MYTHS!!!

Again, I wish you good luck in your search for pain relief and I sincerely hope you find it immediately.

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! :)

Quote:

Originally Posted by cyclelops (Post 677137)

The Fentanyl Patch totally shut down my autonomic nervous system. It is bad anyway due to the small fiber neuropathy but the patch really did it in. I had to stop it or die, basically. I know fentanyl works for some, but if some one is very young, and will likely benefit from upcoming research, I would be reluctant to use fentanyl. Altho, I have weaned from it twice and it is possible, not pleasant though. Dan, it is wonderful that the fentanyl has worked for you without the autonomic effects. A med that works can be a godsend. I haven't found one yet, and likely I won't due to the autonomic issues.

Instead of Tylenol with Codeine, Vicodin is about the same level, and no more addictive and slightly better on the stomach. I use that now and will not go back to fentanyl for now. My pain on Vicodin is the same as my pain on Fentanyl, and that is because nerve pain just isn't very responsive to opiates. Even this has autonomic side effects that are not very tolerable.

I need to go back and read posts to see what SarahMae's type of neuropathy is. With my new family members, I haven't had the time to follow folks on here as I used to.....since I am entering a bit of a relapse due to overdoing.....I likely will be here more.

I am so sorry you feel badly Sarah. Things usually come in waves, kind of like a roller coaster......I am notorious for pushing my good times and then plunging downhill until my next uptick.:eek:

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...

Quote:

Originally Posted by mrsD (Post 677144)

I have some history on methadone:

1) It used to be a brand name, Dolophine. And at one time when there were few opiates available, it was used for severe pain.
Like Cancer. At one time it was a legit pain management option.
It is not just for detoxing heroin addicts.

2) methadone is the generic name and is a useful alternative because it does not cause the euphoric highs that other opiates do (esp heroin), so it can be used to detox heroin without the "pleasure" which is the addictive part. It is very cheap and works for some PNers in very low doses.

I do think doctors are going to be resistant in giving a young person opiates.

That history of back pain you have, Sarah, and your lack of PN in the hands, bothers me. A nutritional cause would be affecting your hands too. I think getting another opinion in your case might be helpful. If your pain in your toes and legs is due to compressed nerves in the spine, a solution for that may present itself. But that would be your decision. Most PNers go thru many diagnostic opinions. Codeine is not a good drug for chronic pain...it has to be activated in the liver before becoming useful.
http://www.medscape.com/viewarticle/420696

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.

Quote:

Originally Posted by mrsD (Post 677228)

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

Quote:

Peripheral nerve injury may result in demyelination or axonal degeneration. Clinically, both demyelination and axonal degeneration result in disruption of the sensory and/or motor function of the injured nerve. Recovery of function occurs with remyelination and with axonal regeneration and reinnervation of the sensory receptors, muscle end plates, or both.4

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. :)