Vitamins & Other Supplements

As a society we have been bombarded by advice and clever marketing surrounding supplements. It is an industry worth some £700 million in the UK and an incredible $30 billion in the USA. This alone is a flag to me except, of course, if I was a shareholder in the companies I'd be rubbing my hands together at the thought of all my dividend payments!

Have we all, though, come to see vitamins and nutrients as entities separate from their original food sources?

Our bodies have evolved over millions of years to be perfectly adapted to extracting nutrients and vitamins from a healthy varied diet (rich in fruit and vegetables and moderate intakes of other food groups), synthesizing metabolites as well as actually producing many vitamins in our intestines. We have the most incredible mechanisms for adjustment and regulation based on our requirements at any one time.

Scientists have told us what they believe are the important components in our food but do synthetic versions or extracts have the same effect as obtaining the nutrient or vitamin from food?

One study in 2012 looked at this question and found that in a clinical trial which compared natural broccoli to the equivalent broccoli extract; the natural product produced four times the amounts of the healthy polyphenols in the blood and urine compared to the artificial product. This suggests that the interplay between our food and the bio-availability of vitamins and nutrients is a complex one, more complex than science can currently explain. Our intestines are designed to gradually extract vitamins and nutrients from our food; but what of the sudden chemical surge that a handful or two of pills and capsules has on our stomach?

For some vitamins there is proven medical evidence of the benefit for supplementation, for example, folate for pre-conception and pregnancy. But outside of this group folate overdose is increasing, especially in countries that regularly add folate to manufactured food products such as bread. Many other vitamins and nutrients can be positively dangerous - in excess, in combination with each other or with over-the-counter and prescribed medicines. A degree in pharmacology is needed to navigate the potential rocks in this choppy sea!

I am not anti-supplementation, it has its purpose. Many people - many of us - have proven deficiency diseases or have poor diets because our diseases make it difficult to shop for and prepare meals from fresh ingredients or even stand in front of the heat of a cooker. My message here is one of safety; self-medication has the potential to endanger our already fragile health.

We all want to get better, feel better, reduce our symptoms BUT we need to exercise caution and common sense before trying something we have read about. The last thing any one of us needs is to (inadvertently) be making ourselves sicker.

So how do we do this? Here are my thoughts:

  • Investigate whether gold-standard randomised controlled trials have been done and what were the results. Be aware that observational studies are not reliable as they can be biased.
  • Remember one person's experience or outcome with a supplement may not be another's.
  • Discuss with your doctor(s) but be aware they may not know every detail of every drug or supplement or every possible reaction or contra-indication between them.
  • Read carefully all of the the Patient Information Leaflets for your medications and supplements to identify warnings relating to other medicines, supplements and herbs etc.

  • Use reputable web resources to research reactions between your medications and proposed supplements.
  • Ask your pharmacist. They do have degrees in pharmacology and are excellent information resources. Many (certainly in the UK) now offer full medication reviews.
  • Make a full list of all your medications and actual/proposed supplements. Be prepared to leave it with the doctor(s) or a pharmacist to be properly checked.

And in the meantime, think about whether you can boost any particular vitamin or nutrient intake with an extra portion of food just as nature intended us to have it.

This being a forum for people living with EM I would like to remark that we all may have a deficiency in Vitamin D because

we probably avoid being out in the sun as much as possible. I do, so the doc checked it out and I have been taking D3 since I became aware of having EM.

Hi Domina

This is exactly what we are advocating, physician led diagnosis and treatments. Thank you for reinforcing this message. Kindest, Jules

Domina said:

This being a forum for people living with EM I would like to remark that we all may have a deficiency in Vitamin D because

we probably avoid being out in the sun as much as possible. I do, so the doc checked it out and I have been taking D3 since I became aware of having EM.

I do NOT take handfuls of supplements. However, I have found magnesium to be helpful in controlling my erythromelalgia.

Physician led is fine, but with erythromelalgia being proactive is not a bad idea, given how little most physicians know about the syndrome.

Don in Austin

Don, proactivity in our diseases is great so long as people don't self-medicate blindly which can be seriously dangerous to health. The message here is 'take care, do your research thoroughly, don't view any one treatment (physician prescribed or otherwise) in isolation and make sure that combinations and dosages are safe'. All the best, Jules

Don in Austin, Texas said:

I do NOT take handfuls of supplements. However, I have found magnesium to be helpful in controlling my erythromelalgia.

Physician led is fine, but with erythromelalgia being proactive is not a bad idea, given how little most physicians know about the syndrome.

Don in Austin

Jules, the problem is the uncertainty of who one can trust. Even doctors can be under the influence of pharmaceutical or other money making companies and recommend supplements and medications that are not really necessary. And with the enormous amount of Internet articles available it is hard to figure out who is right and who is wrong. On top of that supplements are not regulated or checked by anyone. There have been reports of fraud, in other words , the pills didn't contain what they claimed. The FDA is no help in America, most of our food is contaminated with toxins and not everybody has the money to buy organic or to buy supplements. We are more or less on our own as far as trying to live healthy. A sad state of affairs - seems to me that *Man* is his worst enemy.

Hi Jules -

Very good information - I have tried many different supplements over quite a few years and have never had any real positive experiences with any of them - but that is just me - we are all different and we all should be well informed of what we take for treatment whether prescribed or not - and be aware of any changes that are occurring with your body - if anything that is not positive or beneficial to you then carefully consider whether to continue taking it ... especially if an adverse reaction is appearing - please research whatever it is you are taking - beforehand preferably - to make yourself aware of any and all side effects - this can save you from causing harm to yourself unintentionally.

Cheers & Take Care

frostbite (Greg)

COOMA NSW

Australia

It would be reasonable to assume that EM sufferers are vitamin d3 deficient due to lack of sunlight.

We tried a Naturopath and organic supplements only for a while, he told us that the meds our Daughter was taking were causing liver toxicity, determined by looking at her irises.

So we tried a course of natural organic supplements, many off at a fairly large expense. Eight weeks later there was no change so $700 in consultations and natural organic supplements we ruled this out as being helpful in her case. We have however kept her on the d3.

Our Doctor has sanctioned the use Methyl b12 and Methyl folate as well, we obtained this under prescription form a compounding pharmacy. Two weeks in and her mood is much better, feet still flare badly unfortunately but we are trying this regime for three months at least to see what happens.

Very little supplements now! Vit D omegas_“fish oils” was doing lots of magnesium & other supplements. Kidney damage now! So I only get vitiams from foods

A useful and trustworthy resource for gathering your own information on supplements, over the counter medicines and prescriptions medicines to discuss with your own doctor or pharmacist is the WebMD site:

This link takes you to their Vitamins & Supplements Centre

This link takes you to their Drugs & Medications Centre

You can view information on interactions from the page of each individual supplement or drug but there is also a dedicated tool WebMDinteractionchecker

How interesting. Followed one of the links here and discovered that magnesium supplementation can interfere with the action of neurontin. Oh my! No more magnesium at night for me. You learn something new everyday.

I have been using essential oils topically and am getting relief from believe pain. Frankincense, myth, and a few that are vasoconstrictors. Rub them into feet morning and night. Just a few drops. I prefer doterra oils because I trust their politeness.

You name it I’ve taken it or applied it. I’ve found the sweet spot with my meds and Hemp oil. I’m almost a normal person.

Can you tell me what strength hemp oil you are using? Thanks

Hi Joan, I’m using Natures Love. It states on the bottle 500mg Hemp Extract. It used to be offered on Amazon but not anymore for some reason,so my last order was directly from the company. Checked out Amazon again and bought a bottle 2x as big ]. Just as strong and reasonably priced. Nature’s Love is orange flavored which makes it easier to hold under that tongue. I’m goin to experiment. I really do think it has dampened the fire. I still have annoying days but fewer of them & less fiery. I hope it works as well for as it has for me. Patricia