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Energy Breakthrough – One Fibromyalgia Patient’s Fortuitous Discovery

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A year and a half ago I wrote “How I Found My Long-Lost Energy” – the story of how I learned about the effect high-dose thiamine (vitamin B-1) can have on fatigue. Over that period of time, I learned a couple of new things about taking vitamin B-1 that helped improve its effectiveness so I thought it was time to update my story.

After having fibromyalgia for 24 years, I had become accustomed to not having much energy. For many years the fatigue could better be described as complete exhaustion. Most days it was a struggle just to get out of bed. Then a few years ago, I began taking NADH and fairly large doses of Ubiquinol (CoQ10). They helped quite a bit. My fatigue level came up from ‘complete exhaustion’ to ‘very tired’ – a definite improvement but still leaving much to be desired.

Then in May 2013, a new fibromyalgia study caught my eye – “High-dose thiamine improves the symptoms of fibromyalgia.” It was a very small study conducted by a group of researchers in Italy. In fact, the study was so small (only three FM patients) that I normally wouldn’t have paid much attention to it. But the dramatic improvement in fatigue and pain levels experienced by all three participants piqued my interest.

Here are the results for each patient following 20 days of high-dose thiamine therapy:

  • Patient 1: 71.3% reduction in fatigue; 80% reduction in pain.
  • Patient 2: 37% reduction in fatigue; 50% reduction in pain.
  • Patient 3: 60.7% reduction in fatigue; 60% reduction in pain.

Intrigued and wanting to know more, I contacted the lead author, Dr. Antonio Costantini. I learned that in addition to the fibromyalgia study, the same group of researchers had also been studying the use of high-dose thiamine (also known as vitamin B-1) for several other diseases in which fatigue was a significant factor (including ME/CFS) – all with similarly impressive results.

The Story Behind the Research

In June 2010, Dr. Costantini and his associates noticed that the fatigue and related disorders in patients with ulcerative colitis improved after therapy with high doses of thiamine. From that they formulated an hypothesis: “Chronic fatigue that accompanies inflammatory and autoimmune diseases could be the clinical manifestation of a mild thiamine deficiency, probably due to a dysfunction of the intracellular transport or due to enzymatic abnormalities, and responds favourably to high doses of thiamine.”

The study authors stated, “From that moment, we systematically searched for and treated with high doses of thiamine chronic fatigue, when present, in any type of disease.” Not surprisingly, one of the diseases they decided to test this therapy on was fibromyalgia, since fatigue is a major symptom for most people with FM.

While researching the scientific literature on thiamine and FM, they came across a 1998 study that stated, “A number of similarities exist between Fibromyalgia and thiamine deficiency. They include irritability, frequent headaches, unusual fatigue, muscle tenderness upon pressure palpitation, muscular weakness, irritable bowel syndrome and sleep disturbance. Studies published in JACN [Journal of the American College of Nutrition] have demonstrated abnormalities of thiamine metabolism in FM.”

Learning More About Thiamine

By the time I finished reading through several of the high-dose thiamine studies Dr. Costantini sent me, I knew I wanted to try it for myself. But since the dose was so high, I wanted to be sure it was safe. After all, thiamine is not a nutrient we typically hear much about. In fact, until reading these studies, I knew nothing about thiamine except that it existed and was usually included in multivitamins as part of the B-complex.

So I began doing some research and here are some basic facts I learned about thiamine:

  • Thiamine is another name for vitamin B-1.
  • It can be spelled as thiamine or thiamin. The final “e” is optional.
  • Thiamine is an essential nutrient, meaning our bodies do not make it so we must get it from the foods we eat and/or supplementation.
  • Dietary sources of thiamine include legumes, beef and pork, Brewer’s yeast, whole-grain breads and cereals, oatmeal, rice bran and wheat germ, milk, nuts, seeds and oranges. When it comes to grains, it’s important to eat whole grains because thiamine is found mostly in the outer layers of the grain and in the germ, both of which are removed during the refining process.
  • Thiamine is important for a variety of bodily functions, including nervous system and muscle functioning, carbohydrate metabolism, healthy digestion and more.
  • A severe thiamine deficiency results in a condition known as beriberi, which can be fatal if left untreated.
  • Up until now, thiamine deficiency was thought to occur most often in alcoholics, the elderly, people with malabsorption syndromes and people on kidney dialysis. However, newer studies are beginning to show that a mild thiamine deficiency may be more prevalent than once thought.
  • Thiamine is considered safe and nontoxic, even at high doses. Few side effects have been reported. Although no side effects were seen in the fibromyalgia study, a few people in other high-dose thiamine studies did report side effects like insomnia and tachycardia.

Interestingly, when given a blood test, many of the people in these studies had normal blood concentrations of thiamine, yet they experienced significant symptom improvement when taking high doses of thiamine. The study authors speculate that this “may indicate a dysfunction of intracellular thiamine transport or structural enzymatic abnormalities.”

My Personal Experiment with High-Dose Thiamine

Once I was convinced that thiamine would be relatively safe for me to try, I decided to follow the basic protocol used in the fibromyalgia study. Those patients started at 600 mg/day and increased the dosage by 300 mg every three days until they reached a therapeutic dose. (It can take up to 48 hours to experience the effects from an increased dose of thiamine.)

The first patient reported dramatic improvement at 600 mg. The other two did not experience any changes until they reached a dose of 1500 mg. The final therapeutic dose for both was 1800 mg, at which time they reported an abrupt improvement.

Since I couldn’t find thiamine in 300 mg tablets, I worked in 500 mg increments. I took 500 mg for days one and two but didn’t notice any difference in my energy level. On day three and four, I took 1,000 mg but still no noticeable difference. However, within 24 hours of taking my first 1500 mg dose, I noticed a huge increase in my energy level. After two days at 1500 mg, I tried going up to 2000 mg to see if it made even more of a difference, but I actually felt a little worse, so I dropped back to 1500 mg/day and have remained there ever since.

Over the past year and a half of experimenting, I’ve learned two important things about taking high-dose thiamine:

  1. It’s important to take thiamine with magnesium. When the brand of vitamin B-1/thiamine I was taking sold out, I switched to a different brand. Although I was still taking 1500 mg/day, I didn’t have nearly as much energy as I had been experiencing. It was then I noticed that the original brand of B-1 I took also contained 100 mg of magnesium. After a little more research, I learned that magnesium is necessary in order for our bodies to utilize thiamine properly. Even though I was taking another supplement that contained magnesium, the thiamine seemed to work better when the magnesium was included with it. Thankfully, ProHealth now offers its own brand of vitamin B-1 that also contains 100 mg of magnesium, so I know I can get what I need.
  2. High-dose thiamine works better when taken in one dose. I had been taking the vitamin B-1/thiamine all in one dose, but someone who commented on my first article suggested that it might be better to divide the doses because the body can only use so much B-1 at a time. That made sense so I tried taking three separate 500 mg doses – morning, afternoon and evening – for a few weeks, but it just wasn’t as effective that way and my energy level dropped. When I went back to taking the full 1500 mg dose at once, my energy came right back up.

I can honestly say that my energy level now is much, much better than it has ever been since I developed fibromyalgia 25 years ago.

By the third day after starting the 1500 mg dose, I almost bounced from one activity to another and kept thinking, “I feel so good! What can I do next?” Admittedly I’m not still “bouncing” every day. I suspect that was just a natural reaction to experiencing such a drastic improvement in energy. But I have been able to maintain greatly increased energy levels – so much so that I have doubled my work time from 15 hours a week to 30 hours a week!

Unfortunately, I can’t say I’ve also experienced the same reduction in pain as the study participants. While that would have been a nice bonus, I’m still thrilled with my increased energy! It’s a lot easier to cope with pain when you have the energy to move around and be more active.

Need-To-Know Information About Thiamine

Following are a few additional pieces of information that are important to know about thiamine deficiency and supplementation:

  • Thiamine is water-soluble and can be taken with or without food.
  • Drugs, such as antacids, barbiturates, diuretics, alcohol and tobacco may decrease the body’s ability to absorb thiamine properly.
  • Betel nuts and horsetail supplements cause a chemical interaction with thiamine that can damage its ability to work.
  • Eating raw seafood or drinking large amounts of coffee and tea can destroy thiamine’s effectiveness.
  • If you are pregnant, may become pregnant, or are breastfeeding, consult your health care professional before taking thiamine supplements.
  • Diabetics are typically deficient in thiamine. However, Dr. Costantini cautions that diabetics should keep a close eye on their blood glucose levels while taking high doses of thiamine because he has seen a couple of people whose glucose levels have gone up. Benfotiamine is a synthetic form of thiamine that seems to be particularly effective for diabetes but I don’t know whether or not it is as effective at improving energy.

* Karen Lee Richards is ProHealth’s Fibromyalgia Editor. For more information about Karen, who co-founded the National Fibromyalgia Association (NFA) with Lynne Matallana in 1997, see “Karen Lee Richards – Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome.”

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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4 thoughts on “Energy Breakthrough – One Fibromyalgia Patient’s Fortuitous Discovery”

  1. steveenno says:

    If this is so great, Where’s the double-blind, placebo-controlled study on a statistically meaningful number of subjects?

  2. siebertesther says:

    Probably the double blind placebo controlled study on this is where all the needed follow-up stories on small studies–waiting for funding…

  3. Fiona63 says:

    After reading this article I’m very hyped to try my own experiment. Fatigue is one of my worst issues with the FMS. I have already had some increase using the ProHealth Adrenal Energy. But I’m ready for something to add another jolt to my energy level after winter has hit and my first fibro flare has actually hit at Christmas and the cold weather. I’ll be keeping a journal for a few weeks to see how it affects me. I’m looking to go more natural and less Rx all the time. Even wanting to learn herbology, but people think I’m crazy.

  4. Plethora91 says:

    I was so excited when I read the articles, sent off for my B1 and magnesium. After the accompanying headache I finally gave up after 2 weeks. I sooo wanted it to work. My mental clarity was a bit better, but had to give up at 1,500mg; I couldn’t live with the constant headache. Well, on to the next big thing. I’ll pass my B1 on to another friend with CFS.

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