[Foxy]

Personal notes on my peripheral neuropathy (I posted an earlier version of this last April)

Everyone is different and the causes of PN are many and different, so I hope something here can help you as it seems to be working for me. Please note that I am not a doctor and am not recommending this approach for anyone – only relating that it seems to benefit me. You should always consult your physician before taking anything not prescribed by him/her.

Like many, I have burning, shocking and numb sensations in both feet. I am a 64-year-old, non-diabetic male and the symptoms started about 2 years ago. They progressively got much worse.

I went through the normal neurological testing (X-rays, EMG's, MRI, diabetes testing, blood tests for everything) and unfortunately for me the answer is Idiopathic PN – which means they cannot ascertain the cause(s) so they cannot suggest a cure. Very frustrating! The frustrated neurologist at U of Michigan said there was nothing more he could do for me so he gave me Lyrica and said go home and make the best of it. It continued to get worse and started up both legs to my knees - then my arms and face. The Lyrica helped relieve some of the pain but I realized that it was not doing anything to make it better – only masking the symptoms. Even with the full dose of Lyrica (300mg/day), it got so bad that I could hardly walk some days and it was excruciating at night - especially in the evening.

I researched all I could online, at bookstores, health/vitamin stores and libraries. I have tried a number of things and am happy to report that something seems to be working. I have been off the Lyrica completely since December (2007) and have greatly reduced the pain and abnormal sensations in both feet. It is still aggravating but tolerable and I feel it continues to get better. The numb sensations in my lower legs (above the ankles) are gone and it is no longer in my arms or face.

One problem with my "solution" is that I was so desperate to get rid of the pain that I did not use good troubleshooting techniques. Instead of trying one thing at a time, I tried everything I could find all at once and therefore do not know which one or, possibly, which combination has helped. I am also not sure if this approach is really making it better or just masking the symptoms like the Lyrica did. Anyway, it feels much better without drugs. One of the bad things about Lyrica is that it causes weight gain, which is not a good thing for these problems.

Here is what I have tried: I have been taking *calcium (1,000mg – reduced to 500mg - see note below) with magnesium + D3 just before bed - or before sitting down for the evening. This seems to greatly relieve the increased sensations at that time of day.

I also take Alpha Lipoic Acid (ALA – 200 to 400mg/day), Gamma Linolenic Acid (GLA), L-Carnitine, OIL soluble B-12 (Methyl 3000mcg) (they say water soluble varieties do not work for this) and cinnamon (2,000mg) daily.

I am going to add OIL soluble B-1 (Benfotiamine) as soon as I can get some. I found it for sale at Amazon.com but have asked my local supplier to try to find it first. http://en.wikipedia.org/wiki/Benfotiamine

I have also NOT tried acupuncture which some say helps. Maybe later.

If you are diabetic, this MAY help you. I tried greatly reducing (almost eliminating) the animal products from my diet. You can read a good book on this subject by Dr. Neal Barnard called "Dr. Neal Barnard's Program for Reversing Diabetes". I have not been diagnosed with diabetes and I don't feel I got a great benefit from the program but (IMHO) it is certainly seems a healthier way to eat for anyone interested in such a change. (Note: I have given up on this Vegan program after 5 months with no noticeable effects. Couldn’t stand it.)

I also purchased the Rebuilder nerve regenerator (Rebuildermedical.com) and used it twice daily for the past three months. Unfortunately, I cannot tell if it works or not because of all the other things I have been doing simultaneously. (If I had it to do over again, I would hold off purchasing this device to see if the other things worked first.)

I have also been wearing “diabetic” socks (you can buy them at Walmart) that have minimal elastic in the uppers so they do not restrict blood flow to my feet - very comfortable. I also wear supporting shoes or sandals ALL the time.

Another startling thing I learned is that they just did a sleep study and found that people who do not get 7-8 hours of sound sleep every night quickly develop symptoms of Type 2 Diabetes and start eating more as well. Their study interrupted the sleep patterns of otherwise normal, healthy, non-diabetic young people and found that they displayed the symptoms of diabetes in only six days! They also monitored the food consumption and found a dramatic increase leading to weight gain. Since hearing that, I started taking a couple of Tylenol PM's before bedtime and cannot tell you how much better I feel and function now.

After I feel I have gotten as far as I can in relieving and, hopefully curing this malady, I will try eliminating one thing at a time to see if I can pinpoint what has worked for me. All I know is that I feel much better and am drug free. I can even go 30-45 minutes on the treadmill with little or no discomfort.

I hope this helps someone out there with this kind of problem.

Good luck. If you have any comments, questions or suggestions for me to try, please email me.

Jim Fox
[moderator note: e-mail address has been removed]

p.s. 10/28/08
I have just increased the dose of ALA to 400 mgs/day split morning and evening and it seems to be reducing the symptoms.

*The owner of the local vitamin store told me not to take more than 350 –500 mgs of calcium per day because excess calcium that does not get absorbed for bones can build up and attach to the outside of the bones causing bone spurs and can also cause kidney stones I have not researched this yet but have cut back to her recommendations.

p.s. 12/01/2008
I just acquired a hot tub and it seems to greatly relieve the pain. It seems to increase the pain and sensations while in the tub but they are greatly reduced shortly after getting out. Maybe it is helping stimulate circulation?

p.s. 01/01/2009
Weight loss and accupuncture are next for this year.

[lighthouse1]

My dr told my the calcium and magnesium and ala also and I have been doing that which seems to help some but not much. I am going to try the others you suggested one by one. I was wondering what the quanity and how much of the Gamma Linolenic acid and L-Carnitine oil soluble b12 are you taking? I know you said once daily but did not list the quanity or amt. Be careful of the hot tub as the hot water does relive the pain temporarily however in the long run damages the nerves and nerve endings more which can produce more excruciating pain. I have experienced even more damage to my nerves since taking hot baths or using hot tubs, so be careful of that. My dr told me to use only warm water never hot water as it can make the condition worse over time and it has for me. Thanks for the suggestions, I think I will try these also and see if this helps but of course will talk with dr first on it. Thanks

[Foxy]

To Lighthouse1:
I am taking Benfotiamine 200 mg, GLA 500 mg, L-Carnitine 500 mg. Thanks for the advice on the hot tub. I have been keeping it at 100 degrees so it is not that hot and seems to help some. The benfotiamine was hard to find but I finally found it on the shelf of a homeopathic office near my home. It seems to help also but has taken almost a month to see any improvement. Again, I am not sure what is working but today my feet feel much better.

The homeopathic nurse said she has had great success (70%+) in treating PN especially if you can determine the cause. Mine is idiopathic but I may try her anyway. Anything to relieve these symptoms.

Good luck with yours.

[naggingpain101]

You have captured my attention with your comment about the nurse's 70% treatment rate! Where is the nurse? Is homeopathic medicine the answer? I am taking most of the supplements you have mentioned as well as using the hot tub to increase circulation. I refuse to give up. The doctors give me very little hope. They think Lyrica is the magic pill. It helps (400 mg/day) but certainly does not relieve enough pain. Have you tried Anodyne light therapy? I had 6 weeks of therapy and it did not improve my foot neuropathy a bit. I don't like being drugged-I'm doing my best to exercise regularly. I walk on the treadmill 40 minutes/3 times a week and stationary bicycle 30 minutes/3 times a week. It hurts but I force myself to keep it up. Do you have back pain? I have degenerative disks and some nerve impingement. My orthopedic doctor thinks this is the cause of my neuropathy. I forgot to mention that I had a spinal cord stimulator implanted in July. It has helped about 20%-no regrets for getting it done. You are the first person I have found who I can relate to. Foot neuropathy is like having a nerve in a tooth exposed everyday for years! I tell my husband he couldn't stand it and he agrees!

[Foxy]

To naggingpain101. Sorry to hear about your pain. It is unfortunate that the doctors who have not suffered with this cannot relate to what we are going through. Telling me to "take some Lyrica and have a nice life" is not the solution for me either.

I have not tried the homeopathic approach yet. (The nurse's office is in Brighton, MIchigan. If you would like her contact info, let me know and I will look it up when I get back home for you.)

For some reason my PN symptoms are greatly reduced and getting better each week. My feet hurt far less and sort of feel like they went to sleep and are coming out of it.

The only thing I have been doing differently from the things mentioned in earlier posts is a greatly reduced caloric intake. I have never read that calorie restriction could impact PN, and maybe it isn't with me, but I can tell you that I am thrilled with the change in my feet whatever the reason. Weight loss was a goal to prevent sliding into diabetes and other bad things so I decided that, after trying many "diets" over the last 20 years, that the only thing that makes real sense is to cut back on intake. I am eating anything I want - just very small portions - so I do not feel deprived at all. I am also trying to eat a couple of pieces of fresh fruit every day. With my calorie intake at around 1,000 to 1,300 per day I have lost 11 pounds in the last month and feel great. I am committed to making this a lifestyle.

Another very strange thing I have noticed is that if I drink a gin martini the symptoms get worse that night????? Rats!

Writing everything down that goes into my mouth and logging the feeings every day helps me control the intake and maybe it will assist in pinpointing possible reactions to certain things.

Good luck with your situation. Maybe together we can find something to help.

[JJJMMM]

My wife developed severe neuropothy which led to hospitalization. The initial diagnosis was in the direction of Lyme disease. Further diagnostic measures led to a confirmation of ovarian cancer, later stage. Thank God she is responding to radiation and chemo and scooting into remission, a miracle in and of itself. However she is on a Fentanyl patch which controls the pain but as she is sensitive (highly) to anything morphine, she is on perpetual naseau medication. We need to be admitted to the hospital as the chemo induced naseau tips the balence, tenuous as it is, over the brink.
So the question is, how to get off the pain patch, drop the naseau problems, and not further complicate the side effects of traditional treatment. Relative to my research on cancer I find a correlation with acidosis with almost every condition that has this type of pain associated with it. Look it up, from standard to alternate research, you'll find numerous references. There are thoughts regarding the use of high PH therapy as a stand alone treatment for cancer, and a study widely quoted that states that all patients treated in this manner (in one group test) lost all associated pain within 2 to 3 days. One of these treatments is Cesium Therapy. Look this up and note the cautions involved with it carefully as well as consulting your doctor. (You mention Calcium which is used for this as well)
The other solution I have found that seems reasonable is the treatment utilizing a PEMF unit (Pulsed Electromagnetic Field). They are primarily used on racehorses in this country although they have been gaining in popularity within the past 2 or 3 years. Overseas they have been in use for 30 plus years with great results. In both cases they work to increase circulation, oxidation, overall metabolic functions by applying a magnetic pulse in the 1 to 30 hz range. Their effectiveness seems to be well documented and they are particularly noninvasive. Check out the MRS2000+ by Mediconsult and read the usual information as is given on any product, THE PUMP. From here you can check out other units, the cost, etc,(This one is about 2800. Some run as high as 20 to 40k, kind of a wide range here)
Given the naseau, the latter is looking better and hoping to find a rental perhaps through insurance but not holding my breath here due to the relative short time these units in this country have been used. These are not the TENS units commonly used.
Hope this helps and good luck to you!