[SeattleDDC]

Hello everyone. My name is Dwight. I'm 49 years old and live in the Seattle area. About 1 1/2 years ago I started experiencing numbness/burning/etc. in my feet. Did some research and figured out it was PN, which was confirmed by doctors. Was pretty much told there's no cure, and pain management is the only hope. I went to a chiropractor that said he could cure it with lasers. Of course I fell for it because of the pain. Needless to say that was total snake oil. Anyways, here I am 1 1/2 years later wondering if this is what I have to look forward to the rest of my life. At this point I make myself do things, not because I want to, but because if I don't I'm one step closer to giving up. I'm taking Lyrica and Nortryptiline, but they really don't seem to help. I also take Lypoic Acid, but again, that doesn't seem to be helping. At this point I feel like I need to get on some sort of pain medication, which I've resisted, but this is getting really bad. "Thinking" the pain away is not going to work. What are the alternatives? Any help is appreciated. Trying to stay positive, but as you all know, that is pretty hard. Thanks in advance for the help. By the way, if someone can tell me how to link this to my e-mail so I get an alert when I get responses, that would really be appreciated.

[mrsD]

You need to have your B12 and Vit D tested. Some PN occurs when B12 is low. And Vit D helps with pain issues.

Get your numbers for both tests. In the US the lab ranges have not been changed and updated to the new acceptable "low" of 400pg/ml. Doctors are still telling patients that 200 to 400 is "normal" and significant damage can result at that low level.

This is my B12 thread:
http://neurotalk.psychcentral.com/thread85103.html

If you are using or have used RX drugs that cause PN, like certain antibiotics and statins, those can be changed, and you may heal up eventually.
Many of us use some nutrient support, but those must be chosen wisely, based on your lifestyle, drug use, vaccine history, prior illnesses, etc. There are over 100 causes of PN. Only the hereditary types, have no supplement support or drug treatment at this time. But the future may hold some hope for that yet.

To get email notification, go to User CP in the upper left of any page. Click that, then choose Edit Options in left panel, and about 1/2 way down is the messaging options you can enable.
Make sure you click SAVE at the bottom before leaving that page.
You can also use Thread Tools at the top of any post and choose Subscribe to thread, that way.

The 3 most commonly low nutrients in all Americans are B12, Vit D and magnesium. Attending to these first often brings some relief to many people. If these fail to work after 3 months, then moving on to other supplements can be tried.

[SeattleDDC]

Okay, I'll make appointments today. And I did figure out how to turn on the alert. Thank you. This is very much appreciated.

[SeattleDDC]

I went to an appointment with neurology yesterday and this is what I found out. My B12 was 900 something, so that doesn't seem like it's low, based upon what you said. I asked the doctor about vitamin D and magnesium and he said those weren't causes of neuropathy. I am really at the end of my rope. I can't imagine this is my life for the next 30-40 years. Now I'm wondering about opiates. I told the doctor that I really didn't want to take opiates because I was afraid of what they'd do to my liver. He said they wouldn't affect it. I checked online and found something that said the liver damage is caused by the Tylenol in the opiate, not the synthesized opium. If you don't take a dosage too high on the Tylenol side you should be okay. Any thoughts on this? At this point, I'd be willing to do anything to get any kind of relief. Thanks for your help.

[Dr. Smith]

Originally Posted by SeattleDDC

Now I'm wondering about opiates. I told the doctor that I really didn't want to take opiates because I was afraid of what they'd do to my liver. He said they wouldn't affect it. I checked online and found something that said the liver damage is caused by the Tylenol in the opiate, not the synthesized opium. If you don't take a dosage too high on the Tylenol side you should be okay. Any thoughts on this?

Hi Dwight,

For PN, they're more likely to try other kinds of medications first, and that's not necessarily a bad idea -- amelioration of the pain is/should take precedence over what (kind of) medication gets the job done. The current anti-opioid/war on drugs environment/mentality also comes into play.

For PN pain, some of the non-opioid medications actually work better for some people (when they work at all) than opioids -- everyone is different.

IMO, the biggest problems with any medications for treating PN pain (whether opioid or non-opioid) is tolerance and physical dependence (which is not the same thing as addiction). Anti-seizure meds, antidepressants, and others can be as dependence-producing (and difficult to get off of) as opioid medications.

ALL medications have side effects and risks, so it's a good idea to check them out on your own as you discuss them with your doctor.

Here is an older thread on the topic: http://neurotalk.psychcentral.com/thread161040.html
or you could google: medications for peripheral neuropathy for more information.

Doc

[amike]

Originally Posted by SeattleDDC

I can't imagine this is my life for the next 30-40 years. Now I'm wondering about opiates. I told the doctor that I really didn't want to take opiates because I was afraid of what they'd do to my liver. He said they wouldn't affect it. I checked online and found something that said the liver damage is caused by the Tylenol in the opiate, not the synthesized opium. If you don't take a dosage too high on the Tylenol side you should be okay. Any thoughts on this? At this point, I'd be willing to do anything to get any kind of relief. Thanks for your help.

Typically there will be choices that can be made across different kinds of opiates/pain relievers when it comes to the addition of tylenol, etc. For example, there is a fairly effective pain reliever called Tramadol (or Ultram) which can be combined in pill form with tylenol and it is then called Ultracet. So, in the case of tramadol, if you are worried about taking too much tylenol you ask your MD to prescribe the ultram version.

I found Ultram to be helpful with small fiber neuropathy but after about a year, the effect was wearing off (I became tolerant to the dose). So my pain management MD switched me to a low dose of time-release morphine (called avinza). We chose that particular drug because it was covered by my insurance whereas others were not. It has also been effective for me.

So my perspective is that the experience of opiates for pain management is positive (meaning that there are some side-effects but the pain relief makes it worthwhile). If you can find a workable alternative great, but if not, it is not the worst thing in the world.

[mrsD]

You can do up to 2000 IU Vit D3 yourself without testing, according to research results today. We have had posters improve with less pain who improved Vit D3 status. Any higher dose should be based on testing results.

If your doctor will not test you, there is internet testing which is not expensive:
http://www.grassrootshealth.net/
near the bottom of the first page is the testing info.

Vit D has shown promise in reducing pain. It will also help with calcium and magnesium absorption from food.
This link discusses chronic pain and Vit D.
http://www.webmd.com/pain-management...onic-pain-link
You can find other links by searching Google too.

Magnesium is an NMDA receptor antagonist. This is the pain receptors that often get over stimulated by MSG, glutamate and aspartate. Calcium imbalance also over stims this receptor.

http://en.wikipedia.org/wiki/NMDA_receptor_antagonist
Some of the drugs used to treat PN pain are in this category.
Memantine (Namenda) and DM both have RX versions.
Up to 70% of Americans are low in magnesium because of dietary habits.
http://en.wikipedia.org/wiki/NMDA_receptor_antagonist

You can try the new Morton's Epsom Lotion and see how well it works. I use it every day. Only $5.98 at WalMart. It is an easy way to get magnesium without taking pills. (which sometimes are laxative).
http://www.mortonsalt.com/for-your-h...-epsom-lotion/
Apply only a quarter's diameter of the lotion on each foot/leg.
A little goes a long way. If you happen to have high blood pressure problems, this may reduce your high levels to more normal ones. So take your blood pressure to make sure your meds don't get too strong on you. I was on 3 strong doses of 3 drugs before using this lotion, and it now works so well for me, I only need the smallest dose of one--- a beta blocker.

Here is a recent thread on Vit D from one of our posters, whose calf pain went away on proper dosing:
http://neurotalk.psychcentral.com/thread188739.html

I am sorry your doctor doesn't understand pain receptors. You will have to take up his slack I guess?

Here is a website with dietary suggestions to help you choose magnesium rich foods:
http://www.slowmag.com/
The supplement SlowMag is affordably priced at WalMart, and an easy way to take oral magnesium. One tablet twice a day is typically all one needs. (avoid magnesium oxide, as it is not absorbed and remains in the bowel, as a laxative). So if you want to take magnesium in pill form you need to read labels carefully, and it will cost more $$ than the new lotion version.

Magnesium, Vit D, and Vit B12 are the big three--- should be looked at carefully in all PNers before embarking on other supplements. All three of these are either ignored, or testing is poorly interpreted by doctors IF they test you at all. Magnesium in the "normal range" does not always reflect what is happening in the body. So tests for it are only useful in very very low or very very high serum test results.

[nikkirtw]

When I took pain meds (percocetts) for my pain management not only did it not help with the burning tingling pain but it made me into an addict. I'm not saying that narcotics wont help anyone, this was only my personal experience. I do hope you get some relief, stick in there..

[jsrail]

Always consult with your doctor when it comes to treatments, especially vitamins as they can be harmful if taken in excess. They are not a cure-all, nothing is.

I tried all kinds of things, B12 and D vitamins (works just like sugar-pills for me), other supplements, accupuncture, etc. My neuro doc said pain management was all there probably was for me and he was spot-on. I take 3600mg of Neurontin a day and Methadone. They are the only things that work for me, but I am probably one of the worst cases around. But these meds come with a cost, for me, partial bladder failure, low testosterone giving way to muscle atrophy and muscle/bone loss, dependence, etc., etc.

All I'm saying is there is nothing that is a cure all and I know of no cure for PN (though in some cases progression can be stopped if the cause is found). I work with the best Neuro center in the Southwest and these guys really know there stuff and are not afraid to tell you exactly like it is. I'm sure there are many that think meds are some evil thing, but I'll tell you something, they allow me to maintain a pain level of 5-6 everyday (on a 0-10 scale) which in turn allows me to enjoy each day with my young son watching him grow up. Of course, I cannot do everything with him, like ride a bike or swing a baseball bat, but what I can do, I enjoy so much more. I have many other neuro issues that effect my memory, balance, cognition, etc., so maybe I am not a usual case, but please just find what works the best (and accept it when not all the pain is gone) and adjust your lifestyle to match and just try and enjoy life as best you can. :-)

[amike]

Originally Posted by nikkirtw

When I took pain meds (percocetts) for my pain management not only did it not help with the burning tingling pain but it made me into an addict. I'm not saying that narcotics wont help anyone, this was only my personal experience. I do hope you get some relief, stick in there..

...narcotics you will become addicted to them. Of this there is no doubt. So when you are going to stop taking them you will need to go through a protocol of decreasing doses and a period of medically supervised withdrawal. If you are taking narcotics under a doctors supervision and following the administration recommendations you interact fine in your daily responsibilities, interactions, etc. You can go on indefinitely without any adverse affects although you may need your MD to increase the dose periodically.

The problem with narcotics are when you abuse them, i.e, start taking them other than as presribed or have no regular access to them when you are likely to experience withdrawal and increasing act irregular in order to procure more drugs.

So yes, you do get addicted to narcotics.

Mike