Might be a daft question... BUT.... - Pernicious Anaemi...

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Might be a daft question... BUT....

buster_uk profile image
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Might be a daft question... BUT... People with nerve pain associated symptoms do you find it gets worse on a night?

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buster_uk profile image
buster_uk
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23 Replies
EllieMayNot profile image
EllieMayNot

Yes, It is at night that my feet hurt the worst. While I may experience some soreness during the day, it is the night time pain that can be unbearable.

BadHare profile image
BadHare

Taking sublinguals, the injecting Hydroxocobalamin, then more frequently stopped my paresthesis. Aside from fatigue, it was one of my worst B12 deficiency symptoms.

Yes very much so although my nerve pains are not in my hands or feet. The pains get sores from 6pm onwards usually

wedgewood profile image
wedgewood

Any pain is worse in the night I find , when there is nothing to divert one’s attention . Any urge to get in touch with a friend etc, must be quelled . Same with emotional pain . Best wishes .

deniseinmilden profile image
deniseinmilden

Not a daft question at all!

I don't know but a guess would suggest that as healing is done when you are resting and particularly when you are asleep, you can feel this healing.

Either the nerves are complaining that they don't have enough resources - B12 and supporting supplements - to heal themselves (if they don't have they will misfire and this hurts) or they are firing "test signals" to see if a section has been repaired OK - or not!

I find painkillers are helpful if it gets bad and are useful to help you sleep so the best healing can happen but be aware of any side effects from them.

Make sure you are getting plenty of B12 and supporting supplements - a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, maybe vitamin D, ideally from your diet.

BadHare profile image
BadHare in reply to deniseinmilden

Multivitamins/minerals tend to be poor quality, & the contents can cancel out or block the absorption of some ingredients reducing the efficacy.

deniseinmilden profile image
deniseinmilden in reply to BadHare

So what do you suggest instead?

There is truth in what you are saying but you would need an incredibly in depth knowledge of vitamins and minerals with all their interactions and a raft of pills and potions to better them. The cheap supermarket A-Z ones are formulated to be balanced and contain a basic level of all the main things you need in mostly well tolerated forms (unlike some of the more expensive branded ones).

While it can be argued that more expensive individual supplements may have more bioavailable ingredients, this extra bioavailability adds another degree of complexity to the issue and is more likely to cause imbalances unless taken under extreme levels of knowledge and testing which is not generally possible.

A comprehensive multivitamin and mineral supplement is better than just a B-Complex as, by targeting and only supplementing B vitamins you are immediately causing an imbalance.

Nothing can replace a well balanced varied diet with a range of meats, fish, vegetables, fruits, nuts and seeds but for some people, especially those with digestive tract problems this is not always possible and a basic broad spectrum multivitamin and mineral supplement is a good base.

In reality it is hard to eat meals that don't have conflicting mineral and vitamin contents.

BadHare profile image
BadHare in reply to deniseinmilden

This is a reply from onr of the wonderful admins on another forum I'm on:

As a general rule, we advise people not to take multis, for various reasons:

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. :)

I'd also add to the bad ingredient content that they often contain ferrous fumarate which is an industrial byproduct rather than a natural form of iron, as well as synthetic D2 which is useless.

Then there's the issue of whether vitamins are fat or water soluble, & which minerals are best absorbed when taken away from food, so again, even if the cheap supermarket supplements contain what we need, the individual contents combined are a waste of money.

I agree with you with regard to diet as the micronutrients we get this was are absorbed better, being natural, & a shock to me to find my high B12 diet wasn't effective. I stick to a natural wholefood diet & avoid processed foods as much as possible, to have good gut health & get as good levels of nutrition as I can. I stick to restrictive eating times & eat a diet which suits the supplements I take appropriately, ie, foods containing fat & vitamin K2 with vitamin D3, fruit & salads with iron away from other foods containing calcium, tannins, etc, that hinder absorption, & a mineral complex on an empty stomach in the evening, then magnesium at bedtime. I also use ACV or lemon juice to enhance digestion, I fit in a water soluble B complex late morning before I start eating. It took a while & a few tweeks to get into a routine, but it seems to be working for me with regard to feeling much healthier, & my hair is growing back.

deniseinmilden profile image
deniseinmilden in reply to BadHare

Your other poster has some valid points but in my opinion is too dogmatic and using emphatic language "won't absorb a single one" is unhelpful and this unlikely to be true: lots of our foods contain iron and it doesn't mean that if we eat them we absorb nothing.

To say we don't need copper and iodine is just plain wrong.

I am fully aware of the antagonist effects of calcium and iron (my livelihood depends on it) and from a personal perspective know that if you need to absorb iron you should avoid calcium. By having both in there they provide balance. There are different forms of iron, some of which lockup minerals, some which are available and some which have minimal effect.

The multivitamin and mineral supplements are not useless and the cheap ones are worth the money to many people, including myself. Several times I have gone without it (both intentionally and unintentionally) and I get a negative impact each time. Many other people have reported the same.

I was following a similar strategy to you to get well because I also have an in depth knowledge of vitamins and minerals so I could but now I'm a lot better I have increased my reliance on my multivitamin and mineral supplement as the detailed protocol is a faff and for me was only worth doing while I had no choice. Now I have got my system working fairly well again my simple multivitamin and mineral supplement is proving fine for maintenance.

It is just not possible for some people to take all sorts of different things so something is better than nothing and much better than only supplementing half their requirements and hence unbalancing everything.

To balance frequent B12 injections I know many people benefit from "a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, maybe vitamin D, ideally from their diet".

Everyone is different and so their needs and options are different.

I hope that like with me, your complicated protocol solves your problems and you too are able to stay well whilst being able to be more relaxed in future - if that's what you'd like.

Best wishes!

fbirder profile image
fbirder in reply to BadHare

If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one

That's not true.

If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

Nor is that.

Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.

cyanocobalamin is just as good as methylcobalamin. Folic acid is just as good as methylfolate for the vast majority of people.

Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

Wrong. If anything, some contain far too much.

I'd also add to the bad ingredient content that they often contain ferrous fumarate which is an industrial byproduct rather than a natural form of iron,

Ferrous fumarate is as natural as any other form of iron supplement. It is specifically synthesised for use as a supplement. It is not 'an industrial waste product'.

deniseinmilden profile image
deniseinmilden in reply to fbirder

Thank you for taking the time to go through this and debunk it further - it did need it! I'm showing cows again this week and was a bit too short of time to correct all the misunderstandings in it.

Like you, I get very frustrated at the amount of nonsense and rhetoric that is bandied about - why do people have to make and propagate sensationalist comments and claims instead of wanting to just find and work with the basic, if boring, facts?

fbirder profile image
fbirder in reply to deniseinmilden

I apply Hanlon's Razor. I assume that most people spreading such misinformation are doing it to be helpful rather than being malicious. Although some of the rubbish that gets bandied about should be obviously wrong.

As for the origin of these myths. That's mainly people mis-remembering, exaggerating, or deliberate fraud.

The worst offenders are clickbait websites. These make money by hosting adverts. The more people that click on the website, the more money they earn. The best way to get clicks is to use alarmist, sensationalism. People are more likely to post links to 'Vitamin Z. Why your diet is lacking this essential for a healthy life', than to 'Why there's no such thing as Vitamin Z'.

People just need to use a bit of common sense. If iron in a supplement prevented the absorption of anything else, wouldn't iron in food do the same?

deniseinmilden profile image
deniseinmilden in reply to fbirder

Very true! Absolutely agree.

BadHare profile image
BadHare

We absorb micronutrients best from food, but current farming methods mean the soil our food is grown on is often lacking. The quality of supplements we take to ameliorate this is important, as well as other health conditions that impact on what we need:iodine being mentioned in that case as it can negatively affect those with certain forms of hypothyroidism, & copper can affect other mineral absoption.

I had no benefit from taking expensive multi-supplements. Like a lot of people I used to read the labels telling me multi-supplements contained everything I needed, & being ignorant I bought them for years. I now feel a lot better with improved general nutrition, & ensuring I take what I need & what works most effectively for me. My protocol isn't complicated at all as I've made small adjustments for several years, carrying on with those that improved my health & discarding those that didn't. Relaxing is an odd term to use with this regard. I'd describe it more as satisfying to know what I'm doing is both correct for my health, & I'm neither wasting my money on useless products, or in my ignorance doing any further harm. We each have different epigenetic factors that affect us, but knowingly putting something harmful or useless into my body seems rash rather than an effective convenience that I can get around with a little foresight. :)

deniseinmilden profile image
deniseinmilden in reply to BadHare

I'm fascinated - precisely what

"current farming methods" mean the soil our food is grown on is often lacking [in nutrients]???

Are you talking min-till? No-till? Or something slightly older school? What rotation have you discovered this on?

How many hectares are you talking about and where particularly in the country - Britain's land use is pretty diverse.

How recently have you done any soil analyses? What soil bed and profile were you testing? What lab did you use for your micronutrient sample results?

You are very knowledgeable and I am interested in your data source.

BadHare profile image
BadHare in reply to deniseinmilden

I have a BSc. in Geography & Environmental Science. Whilst it's a long time since I've had to test soil samples, I have followed issues regarding environmental farming practices for decades. It's common knowledge that post-WWii farming methods of using nitrogen fertiliser routinely rather than allowing fields to be left fallow &/or with grazing animals in traditional crop rotation depletes soil nutrients. The food we eat is often lacking in nutrition, hence greater need for good quality supplements.

fbirder profile image
fbirder in reply to BadHare

We absorb micronutrients best from food,

Not necessarily.

Two examples, off the top of my head.

Folates in food come as polyglutamyl conjugates. Before the actual folate can be absorbed these glutamic acid groups have to be removed, one by one, by pancreatic proteases. Some people may have problems with this process. Folates in supplements are not conjugated and so have a higher bioavailability.

Iron is most vegetables comes in a form that is highly difficult to absorb. Iron in meat, or in chelated supplements (fumarate, bisglycinate, etc.) are absorbed much more easily that iron in vegetables.

BadHare profile image
BadHare in reply to fbirder

I still feel better when eating iron rich vegetables, on top of my supplements, though I am careful not to overeat phytates.

I eat a high folate diet, which must be better than synthetic folic acid? Something I've come across a few times is issues with methylation, & that folic acid causes issues for some folks. It's on my list of things to read up on.

fbirder profile image
fbirder in reply to BadHare

If you're going to read about folate and folic acid then stick to the science. There's a load of complete garbage on the interwebs.

I suggest you start your research with this...

youtu.be/MzT-iU8UIwo

BadHare profile image
BadHare in reply to fbirder

I've not read enough about folic acid as it's something I'm not lacking in, though have come across people with methylation issues on other forums. Perhaps the pertinence of cofactors differs with health conditions & genetics.

I accidentally bought cyanocobalamin rather than methylcobalamin, & only realised my error when I struggled to get out of bed again. I appreciate what works for me is not generic.

deniseinmilden profile image
deniseinmilden

Yes, but what "current farming methods" mean the soil our food is grown on is often lacking?

What method/activity are you referring to?

How is this method/activity causing the food to be less nutrient dense?

What time scale specifically are you referring to when you say "current"? Do you mean the last 5 years or what?

When was good - as a baseline that we should be referring back to? 1950?

What specific practice do you think we should go back to? Do you think the introduction of the tramline system was the problem, c1980s?

fbirder profile image
fbirder

My neuropathy isn't caused by a B12 deficiency, so what I say may not apply.

The pain caused by PN isn't relieved by normal painkillers (paracetamol, ibuprofen, etc.). Codeine, and other opiates, work but there are risks of addiction.

I have found gabapentin works very well. But I have to limit the dose to 3x300 mg daily. Otherwise the side-effects (mainly intensely vivid dreams) make me feel knackered during the day. So I would find that I would start getting sudden stabbing pains in my feet during the evening. Often this would be enough to prevent me sleeping, so I would have to take some codeine.

Then I started taking alpha lipoic acid (3x600 mg a day). I'd read that it helped with the pain of diabetic neuropathy and my neurologist said it might help and couldn't hurt. Since then I've not had to resort to codeine at all.

If you're not taking effective medication for the pain then ask to see a neurologist.

Foggyme profile image
FoggymeAdministrator

All. Please note that some of the replies in this thread are off-topic, alarmist, inappropriate, and inaccurate. These replies have been deleted so some of the remaining appropriate responses may appear out of context.

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