Overcoming Fibromyalgia Fatigue - My Personal Experimentby Karen Lee Richards Patient Advocate
In May, I told you about a small study that found high-dose thiamine improved fibromyalgia symptoms - particularly fatigue and pain. I also told you that I was going to look into it for myself. Today I'd like to share with you what I learned and experienced.
The study itself was very small - so small it only included three women who have fibromyalgia. Normally I wouldn't pay much attention to a study that small, but the dramatic improvement in fatigue and pain levels experienced by all three women piqued my interest.
Following are the results after 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.
I wanted to know more so 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 - all with similarly impressive results.
After reading through several of the high-dose thiamine studies Dr. Costantini sent me, I knew I wanted to try it myself. But since the dose would potentially be so high, I needed to be sure it would be safe for me. 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 was usually included in multivitamins as part of the B-complex.
I began doing some research on thiamine and learned that:
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.
I found it interesting that, 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 Human Guinea Pig Experience
Once I was convinced that thiamine would be relatively safe for me to try, I decided to follow the basic protocol used in the FM study. Those patients started at 600 mg/day and increased the dosage by 300 mg every three days until they reached a therapeutic dose. (The reason for waiting three days to increase the dose is because 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. Within 24 hours of getting to the 1500 mg dose, I noticed a huge increase in my energy level. I then tried taking 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.
I've been taking 1500 mg of thiamine each day for about six weeks and I can honestly say that my energy level now is much better than it has been in 24 years!
So far I can't say I've also experienced the same reduction in pain as the study participants. I'm hopeful that will come in time but even if it doesn't, I'm 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.
A special note for diabetics: Diabetics are typically deficient in thiamine. However, Dr. Costantini cautions that people who have diabetes 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.
Image: Copyright (c) 123RF Stock Photos