Nutrition help for neuropathy?
 

For the last 3 months I have been in bed with the worst inner ankle and foot pain.On a good day I can do errands in an air boot though the neuro wants me to start using the shoe.Anyhow this comes with tingling on the bottom and stabbing. It feels like there is no circulation around the ankle. In addition the calf of both legs hurt and feel tight. I have had every test 2 mri's,emg,bone scans,xrays. Been to neurologist,orthopedics,foot/ankle specialists,gp. I have had multiple blood tests for deficiencies. I do have high liver ezymes and high b12 along with low white blood but not a concern the docs said. The foot ankle doc thought it may be tarsal tunnel and I had 2 shots. Possibly surgery though no test showed tts.The neuro thinks its neuropathy and though better now may be from years of anorexia. I'm doing the best I have and still on high meal plan with just a small amount to gain left. Anyhow I was taking b12 but the neuro said since high to reduce for a week. Can anyone share any nutrition things that helped there nerve issues or anything else that helps? I have an apt at pm clinic in a week and tried pt once but made it way worse. We still don't have a definate dx but am waiting for my 2nd mri of foot/ankle back.I don't know how any of the tests don't show and I'm in this severe of pain. I also have been on lyrica,cymbalta,neurontin all which I had side effects and now am suppose to try elavil. Thank you for any help.

first off...
 

you should start with essential fatty acids. Poor dietary intake for a long time
with your eating disorder can damage the nerve sheath (insulation) which is provided by fats in the diet. Vits B12, B6 and folic acid work with EFAs to repair nerves.

Normally fish oil is enough, but you may need Flax oil and evening primrose in the beginning as well to repair. Start at one cap/day of each, you can take up to 4 fish oil if you want unless you are on blood thinners, or have a clotting disorder, or low platelets.
Magnesium and zinc also are needed. Zinc is a cofactor with selenium in thyroid hormone conversion, and if you are not utilizing the T4 your thyroid makes, then swelling in the ankles and joints occur-- it is a tissue hypothyroidism---because the T4 is converted to T3 with zinc and selenium in the enzymes there.

A high potency multivit may be enough, or you could take them separately.

Magnesium blocks NMDA pain channels, and can afford some pain relief. It is necessary to convert Omega-3 fats (flax)in the diet to useful fats your body needs for repair.

So you need to limit sugar intake, and concentrate on good protein, and good fats.

I have EFA, Zinc and magnesium threads on our Vitamin forum.

It takes time to repair, so be patient.

Thank you for your quick reply. I just started to take fish oil its 1200mg. The neuro said for me to stop the b complex for at least a week cause my b12 levels were so high. I'm confused though cause how will I know if they go down without another blood test. Is there issues around high b12? Does extra protein help and other then sugar and that is a huge weakness for me are there other foods to avoid?Also for meds like I said I had bad side effects but now wants me to try elavil any thoughts? Thank you for your help.

Hi, you said: "The neuro said for me to stop the b complex for at least a week cause my b12 levels were so high. I'm confused though cause how will I know if they go down without another blood test. Is there issues around high b12?"


I did not know a person could have TOO HIGH LEVELS OF B-12??? Mind if I ask what your numbers were??? I just had my first b-12 level test done and I will find out on Monday what my level is.

I'm trying to get as much info on B-12 as I can get.

Thanks, Melody

Stickies
 

Daniella,

There's a lot on nutrition for PN in the stickies section. My posting there, at http://neurotalk.psychcentral.com/sh...p?t=177&page=2 (scroll down to item's #18 - 20) discusses this topic.

Basically, what helps your heart and general health helps your nerves function and heal. You know the drill:

- whole grain foods (good balance of fiber, good fatty acids, micronutrients, slow absorbing carbs) ,

- lots of soluble fiber from grain, beans, nuts, fruit and vegetables (absorb cholesterol and toxins from the intestine and help maintain healthy intestinal environment),

- little or no concentrated sugar from any source, including fruit and juice (really bad...stresses the liver, the pancreas, directly stresses nerves, increase inflammatory response),

- small amounts daily of high quality protein from beans, fish, eggs, small servings of lean meat (the basic building blocks of cells),

- and as MrsD stressed and me too in the sticky, a good balance of omega-3 and omega-6 oils (reduce plaque, reduce inflammation, basic building block of nerve myelin sheath).

My wife and I used to be meat-and-potatoes folks, but over the years, as runners and fitness buffs we slowly changed over to a healthy diet. Start out by substituting: non-fat milk for regular or low-fat (you get used to it within a week) and then low-fat soy milk. Absolute no-nos starting now are regular sodas (about 10 tsp. of sugar per 12 oz.), sweetened coffee drinks (a vente Frappacino has about 30 tsp. of sugar!), fruit juice (same as soda, except it's fructose which is even more of a shock to you system than sucrose). Slowly switch to healthier meats or tofu, and cut portions. I hardly eat beef or pork anymore, preferring fish, tofu, or a bit of lamb occasionally because its grass fed, lean, and hormone and antibiotic free. Pass on the cake and go for fruity deserts, and eventually fresh fruit for dessert. When you cook, use olive or canola oil. I fry with olive oil almost exclusively. It's especially delicious with eggs, and in baked goods. Use Smart Balance or comparable as a spread, and eventually use NO fats on toast. On toast, my wife and I went from butter to margarine to Smart Balance to just a thin film of Smart Balance to jam only on toast...and then switched from jams or preserves to spreadable fruit that I heap on without guilt. We also went from wheat bread to whole grain breads...now wheat and white bread taste like pablum or mush to us. Your taste changes quickly to conform to what you're eating, so be adventurous and stick with the healthier foods you like.

Diet isn't enough. You also need to exercise. But that's for another thread.

Your body mass index (BMI) should be less than 25, and ideally less than 22 (see http://www.nhlbisupport.com/bmi/ ) . My BMI is 25.1 so thanks for your post. Its a wake-up call for me.

All drugs are toxic to some degree. They stress the liver and kidneys which have to eliminate them. This is something to be aware of in your search for health. As you get healthier, you might be able to reduce your daily drug intake under a doctor's supervision. We tend to add drugs as we age, and continue ones that aren't necessary. Except for carefully calibrated amounts of specific drugs to control life threatening things, we can often safely cut back or eliminate some.

You can cheat every once in a while with a clear conscience because the only angels are in heaven. Negative emotions make our life worse and our PN much worse so don't beat yourself up over any of the above. It's not your fault that you have PN. jAll of us were blind-sided by it.

To be honest I don't know the exact numbers but I think they were very high. I'm not diabetic though. I had started though taking the b complex a few weeks before. I'm actually still underweight though I have gained a huge amount. I see a nutritionist and she is helping me with this as well. I'm on a very high calorie diet. I just like to hear from people who have been through. So extra protein though doesn't help rebuild the nerve quicker? Were you saying soy is good? I do drink lf soy milk in addition to low fat dairy. I wonder why sugar is such an issue if not a weight problem?I eat mostly whole grain but I do consume sugar.Thanks and Melody I will find out. I have had so many tests and been to so many docs and I forget things sometimes.

Prediabetes is correlated with poor nerve function and PN. It is called various names. "glucose syndrome", "prediabetes", or "metabolic syndrome". Excess glucose in the blood increases inflammation, damages nerves, and slows down or stops healing. Sugar and starch consumption leads to prediabetes and diabetes by stressing the liver and pancreas, and reducing the bodies ability to utilize insulin. This is a topic every aging person should know about. Eating a high glycemic index diet is one of the main reasons for poor health. Here's some places to start your research: http://www.google.com/search?hl=en&s...hy&btnG=Search and http://www.google.com/search?q=insulin+resistance+neuropathy&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-USofficial&client=firefox-a

As a practical matter to slow down carbohydrate absorption, my excellent physician at Scripps Clinic here in San Diego recommended including a few nuts or a bit of cheese when eating high sugar fruit such as an apple or orange. The glycemic index of starch is the same or more than sugar. My next dietary change will be to switch to mixed grain pasta for that reason.

Protein can't be stored in the body. Once you have enough protein, any additional is broken down into fats, sugars, and toxins. Most Americans get more protein than is healthy.

Soy is good because it's low oil, and soy oil is healthier than animal fat. It's not a magic cure or anything. The highest quality and easiest digested protein sources, in order, are eggs, fish, lean poultry, vegetable proteins (soy, beans and grain together), red meat, shoe leather.

========

I don't think that there is any magic or quick cure for PN. Except in rare cases of PN caused by infection or toxins, most of our PN represents a breakdown in our general health. That breakdown shows up differently for each of us. Some get diabetes or heart disease or arthritis or other degenerative diseases. We got PN. Some of us have several or all these problems and more at the same time. Metabolic disorder is the root cause of much or most of this degeneration. That's the problem with sugar and starch.

Has your doctor reviewed what the nutritionist is doing? I don't think most certified clinical nutritionists would recommend a high carbohydrate diet unless you have specific health conditions that require it. Back in the 70's through early 90's when I ran and backpacked and my wife ran and taught aerobic dancing, a high carb diet was the norm for athletes. Then came the goofy Atkins no-carb diet. The thinking now, backed by a lot of research, is that variations of the Mediterranean diet are best. All the diets ("The Zone", "South Beach", "Omega Diet", etc.) look much like the new USDA food pyramid ( http://en.wikipedia.org/wiki/MyPyramid ) and the very similar Canadian government food pyramid.

It seems to me that reducing PN symptoms in a sustainable way requires a return to health, a holistic approach involving healthy diet, exercise, reducing toxins in our lives, controlling our negative emotions, and developing health affirming spiritual values and vision. In a sense, PN is a reflection of who we are and how we live. Becoming PN free requires a change in who we are and how we live.

This approach has worked pretty well for me, and others here. As I type this, I'm totally pain free (except for my cat who insists on walking on the keyboard as I type. He can be a pain :rolleyes: ).

Wonderful post! Thanks for all this. I've been the meds route for various things and find I'd much rather control as much as I can in a more holistic and natural way. The meds caused more problems than they were worth and more problems than what they were given for to begin with!

Thank you times a million. Your so educated. Ok see my case is very complex. My history of anorexia till 1 year ago was a very bad case. It led me in and out of hospitals and cardiac units. I had dropped more then 40 pounds under. So on that note I went ip again and when I came out a year ago have regained a lot of weight but still are under slightly. On an ed recovery diet is high calorie but based on ada exchanges. My blood sugar when tested is normal but I told thr neuro how I drink in access.So the neuro said not diabetes but could that be pre.I did't ask. I'm new to this so without my mom there I get confused though I'm 28. All the docs are aware of my past and have seen my medical history. Its frustrating as this year I have been the healthiest of my whole life and finally getting my act together and now this. I'm comitted to being healthy now and maintain a normal weight/nutrition. I'm willing to do what ever to feel good. The issue with sugar is me and I guess when you have been malnurished there just happy you get adequate calories. I do eat the rest healthy carbs of whole grains,lean protein,healthy fats though. I'm very concerned though also as now my other leg is hurting as well. I thought it was from too much pressure from not using the original injured one but now am wondering what is going on. I know there is no quick fix but hoping to speed along. As for moving. I'm in so much pain that like I said I'm in bed most days. I don't know if that is helping or making things worse. I need to try tomorrow to get out of the airboot as like I said my other leg is in a lot of pain too and want to try to equal my stand. Its like cause no exact dx all the docs I see are more taking guesses I feel. Even the docs I was going to see out of state who reviewed my case felt there wasn't anything they could do. I'm hoping the next tests give more direction.I feel like I'm loosing my mind and now if both legs/feet are going I don't know what to do but trying to stay in the moment. Thanks again.

Daniella,

Apparently the doc doesn't know much about B12. The test measured lots of B12 in the blood, which had not been stored or used, and, most of which will go out with the urine. It takes time to rebuild stores if they are low.

High B12 is not a problem. Low stores of B12 is a big problem, and the B12 test (especially after B12 has been taken) does not indicate what stores are.

Aim high. And, in case you are moving toward severe malabsorption (B12 is safe so there is no reason to take a chance) and additional 1000 mcg at least a few times per week would be much better than relying on a B complex for the B12. If you are malabsorbing and it becomes severe, a regular B complex will not give you any B12 at all.

rose

Sorry I'm confused so what should I take? The b complex is not good? The neuro said to stop taking it for a week which is confusing. He didn't seem so concerned with the high levels.So there is not an side effects? When I go to the store it says b12 or do I get script?What is the b complex for then which was told to be taken by the foot/ankle doc. See my problem is every doc I see tells me different. Too many people in the mix and now I have 2 more docs coming up. I feel like an experiment. All it seems is to make me worse as when he sent me for pt. I have an apt at a pain managment clinic in a week. Very nervous for that.Thank you

Sorry I was not clear. B complex is fine. It just will not provide B12 to a person with severe B12 malabsorption, and a healthy percentage of those who malabsorb somewhat progress to severe malabsorption (which means they need a much larger dose of B12).

I don't blame you for being confused. Stopping B complex for a week is a strange request, if no reason was given.

Some buy their B complex and 1000 mcg or more methylcobalamin B12 online. The selection is usually better and the prices can be much better. Many of us have used iherb.com for years.

Get a good, reliable brand. Do not fall for hype.

rose

Hi Daniel, if you take notice of the people that answered your post you won't & can't go wrong, they really do know what their talking about.
I wish doctors all over the world would read Roses website, http://roseannster.googlepages.com/home, their b12 knowledge is a bit scary to say the least.

Brian :)

Thank you. I did look at your site Rose its very informative. Thank you for saying its ok to be confused. I see so many docs and just now am I starting to ask more questions as I see they don't always offer. The reason the neuro said to stop the b complex is cause my b12 was very high but need to get exact numbers. The 1 week thing was confusing cause how will I know if it comes down. On your site though it says you can still be deficient so I wonder how you find out or is it impossible? I have had 2 huge sets of blood work. It just showed high liver enzymes,high b12,and low white liver count. In addition I have severe stomach bloating,nausea,cramping,and constipation.I talked too the neuro about diabetes but my blood sugar is normal.In the past I did have a hypolycemia and still sometimes will get the symptoms. I drink a huge amount and now with these syptoms but is pre diabetes though when your blood sugar is starting to get too high? I was just diagnosed with ibs c and at one time pancreatitis symtoms but the tests further said no but to watch. Anyhow I was also wondering on many of the sites its says so important to get up and move. I'm not looking to exercise but like I said have in been in bed for 3 months with basically no errands even. Today I am going to attempt a shoe on the real bad leg/foot/ankle because like I said the other leg/foot/ankle is hurting more and I feel may be from so much pressure.I'm calling the neuro about that new symptom tomorrow. I just feel the pain is so horrible and some days I just can't get out of bed.Or fear it will get worse. I had pt one time and he did some stretching and massaging of the area and for a month after I could barely move and had to take vicadin 3 times a day. On that note I'm not a lazy person as for 12 years of my life I didn't miss a day of exercise ?'s. You all have helped so much and I feel so less alone. I'm sorry though for everyones pain.Thanks again.

B-complex may contain B6 - so too much of that is a bad thing..........
Found this online:

"-----------Vitamin B6 Overdose

People taking large dosages of vitamin B6 (pyridoxine) on a regular basis for an extended period of time should be aware that problems can arise. There is a potential for damage to your nerves, but in most cases it is reversible.

Symptoms that you will notice first with a vitamin B6 overdose are numbness and tingling in the hands and feet.

You may also notice a loss of manual dexterity and your balance may be a bit wobbly.--------------"

Liz

Daniella, Prediabetes is when the blood glucose levels that are higher than normal but not yet high enough to be diagnosed as diabetes.
Normal fasting blood glucose is below 100 mg/dl. A person with pre-diabetes has a fasting blood glucose level between 100 and 125 mg/dl. If the blood glucose level rises to 126 mg/dl or above, a person has diabetes.
Brian :)

weight gain....
 

I think is best served by eating FAT... good fats that is.

People who lose weight thru dieting (bariatric surgery) and/or eating disorders develop what is called "slimmer's paralysis"...which is nerve damage due to
poor fat nutrition.

There are 9 calories in fat/gram compared to 4 for sugar and protein.
So eating good fats in quantity will help you gain faster.
Nuts ( a good source of magnesium and unsaturated fats)
and you can do the new peanut butter now (Smart Balance) with its 1 gram of Flax oil in each serving.
Smart Balance spreads ... instead of butter
Smart Balance Mayo... are all good choices and taste good.

Avocados--are very good... some guacamole sounds like fun to me!

Thanks. Thats funny I was just eating a pb sandwich made with that new omega 3 spread. Its good. Anyhow I'm freaking because for 3 months its been only the left leg and now yesterday and today my right was has similar pain not as severe as the other one but very painful. I wish it was Mon so I can call the neuro.About being on your legs with this issue I feel like it aggravates it and some days I just can't get out of bed like I said but I see here how movement is important but doesn't it make the symptoms worse?Is anyone here on meds? I'm suppose to start elavil. I had tried nurontin,cymbalta and lyrica with all bad side effects. Thats what I thought too about diabetes and though I have other symptoms I feel are similar my blood sugar is normal. I'm going to ask the neuro tomorrow about my b12 and the foot/ankle on tues who told me to take the bcomplex but for now have stopped it.See every doc tells me something different. Too many opinions.

Daniella:

Don't be surprised if, when you tell your neuro about the B-12, he or she looks at you like you have two heads.

Doctors DON'T GET THE B-12 thing. You'll be lucky if your neuro says "oh, it can't hurt you, so go ahead".

But if your neuro says "wow, that's a great idea", wrap up your neuro like a christmas present!!!

Melody

Lots of good advice, of course. Great place and people.

Regarding the B12: Stopping for a week will allow you to get some idea (not an accurate indicator) where your stores might be now. Make sure the doc doesn't think that stopping for a week will show where you were before you started taking B12. Not true at all.

rose

Thanks. Well I have to call my neuro today because the other leg that has been just sore slightly from what I thought pressure due to the damaged leg is really painful and I'm fearing its going to get like the other. Melody there is no way my neuro will say that. Its funny cause he made a mistake and I wanted him to say he did. I was like I know docs make mistake but then I got nothing. I think docs take a course to not say sorry. Anyhow he is suppose to be one of the best. I have just seen him a few but had a few phone calls too.
The think with waiting a week is he didn't order new blood work and just told me to wait a week which I assumed meant to start again. So to recap. B complex pill forget and b12 pill of how many mg is what I want?I think I will wait a week anyhow. Also I'm going to ask that # of my b12.

At least 1000 mcg, which is 1 mg.If it is methylcobalamin, many many times that has been tested and found safe. So, it's up to you.

rose

All I know is that ever since I started taking the methyl b-12, my burning has lessened. And I take ALOT!!!! I take about 5 of the 1000 pills a day. I place two under my tongue and I let them melt.

I do this first thing in the morning (starting with the two pills). I read it's better on an empty stomach. Then during the day, I just do the rest.

Gives me a lot of energy and if it eventually takes away the freezing, (I don't get the buzzing), then I'll be a happy camper.

So for me, the b-12 methyl was a GOOD thing!!!

We just came back from GNC. They are having their 20% off sale.

I wanted to buy the Alpha Lipoic Acid but it's out of my price range.
I was walking up and down the aisle and lo and behold I see a package of a Pycnogenol and Co-Q10 for $11 (after the 20% discount).

30 pills, one a day. I figured, Hey, Pycnogenol and Co-Q-10 for 11 bucks.

Can't hurt. Might even help.

The back of the package says: Pycnogenol - 30 mgs. CoQ10 - 100 mgs, and L Carnitine Tartrate - 250 mg. (I believe that has something to do with the metabolism).

Just wanted to share!!

Mel

So I'm a supplement person now!!!!!

Melody

Wonderful news!
 

I'm at 36 days of the B-vitamins therapy and I'm at the point now where there are actually days I have *no* pain. So maybe you'll have results just as positive! Don't get discouraged if you suddenly hit a spot where the pain seems to be back or a bit worse than the previous prior few days. It's probably nerve regeneration and the 'waking' of the new nerves. That's the best analogy I can give for what it's like. It goes away and is even better afterwards than before. It's like a miracle after living with my feet like this since about 2001. :hug:

Thanks. I want to try the b vitamins but the neuro said to wait a week on the b complex even cause my levels are high. I was suppose to have another emg/ssp today but am too sick and in pain so am going on Thurs.The thing is as I have stopped the b complex I have gotten so much worse but may be a fluke and also when my other leg started in horrid pain. Thanks for not letting me loose hope.I lost it at my moms as last night I thought I was going to the er. I felt like I was dying. I'm in the worst pain after three months and now in both legs and sick from the pain killer as I'm taking 2 instead of 1 or a horrible flu. So frustrated and scared.

Levels of what, specifically? They cannot be too "high" for B12. And if you need it you are being damaged further until you get enough stored to stop the damage.

rose

The neuro said my b12 level in my blood work was high. I told him the foot/ankle doc had me start b complex 3 weeks back. The neuro said to stop or take less for a week then see but I'm not planning on having another blood test soon so i don't get it. I'm not sure the number. So will there be harm if I take the b complex?

"High" B12 is not a concern, at all.

If that is all the neuro said was high, the neuro doesn't know diddly about B12.

If you had hugely overdosed with B6 or B3, there would be valid concern. But to tell you to stop B complex because B12 is high is just plain ignorant.

rose

Thank you. I'm going to make sure on Thurs I wasn't confused and he didn't say high b6 or something. I will also pick up my blood work numbers. On any regards it still confuses me about the week stop plus I had only been taking the 1 b complex for 3 weeks so could any of the numbers be high from that. I do in addition take a 1 a day womens vitamin. Regardless I think since no bad effect of too much I will stop the b complex and get a b12 pill. Is the amount you listed before a good start amount? Has anyone tried a gluten free diet diet but not intolerant or lessened the gluten in there diet with benefits to pain? Rose thanks again.

Oh, hon. I'm so sorry. I wish I could take your pain from you. I hope they can figure something out that helps relieve it. It does sound as if the B-12 was helping. :hug:

At least 1000 mcg (or 1 mg). 1000 - 2000 mcg is the basic medical textbook dose.

If it's methylcobalamin type, you may take much more if you like, and, sometimes it helps even if there isn't a deficiency in B12. Some people, for one reason or another, need lots of methylcobalamin.

rose

Lidoderm patches...
 

If you are going to the doctor I'd ask to try these. They can help nerve pain
considerably. Enough to get you out of bed perhaps.

I have used them for years.

Thank you. I got the b12 in the 1000mcg and I was mistaken the b complex I think has 15mcg. The multi I take has 6mcg.So assuming I still have high b12 and the doc said to lay off for a week and it may be a fluke but since I stopped the b complex I feel worse and more symptoms what should I take? Should I take just the b complex or just the b12 or both?

If I were you, I would take a B complex (I would look for one that has better doses than that one appears to have), a multi-vitamin, and I would take 5000 mcg methylcobalamin per day.

But I would take the methylcobalamin alone, not with any other supplements. And to get the most out of it, I would take it without food.

Make sure you are getting iron-rich and potassium-rich foods.

I also would do a lot of reading on the vitamin form, where there is a lot of good information on other nutrients, including fish oil.

rose

Thank you and I replied on the other about this as I'm still confused on the 5000 is that 5 of the 1000mcg of b12 or am I lost? Sorry I think I'm a little slow.

Yes, 5 of the 1000 mcgs of the B-12. I take this every day.
So far so good.

Melody

Wow. I thought 1000 was a lot and almost bought the 500. Do you take a b complex too?So there is no harm in that much?

A page from my website: http://roseannster.googlepages.com/treatment

rose

Thank you. I read your other response too. Do you take magnesium as well? I had started and the my moms friend brought it up about taking it when she had leg cramps and how it worked. If so how much of that? Did you start taking 5 of the b12 right away?

Well, from what I've read - too much b-complex can be a bad thing because B6 can cause problems if you overdose. But B12 ALONE - I'm not an expert - is usually reported as safe at high levels.
You may be experiencing more pain because you stopped the B-complex, which had B12, which you aren't getting now.
So maybe you could try JUST a B12 supplement (without the "complex")?
I take one B12 "dot" daily (500 mcg) sublingual (under the tongue). Plus I give myself a monthly B12 shot (doctor prescribed).
Also, ask your doctor which B-vitamin he thinks is too high. If it is not B12, you should be able to keep taking it by itself. If your doc says it IS the B12, ask him why he thinks it is dangerous. Maybe he knows something we don't?? I'm interested to hear the doc's rationale.
Liz