My wife has suffered fibromyalgia pain for as long as I known her, I wasn’t for a number of years we got a formal diagnosis.
We have seen specialist after specialist and numerous alternative health practitioners with no results and mounting expenses.
I would like to share with you what I have done and the reason why I think this is working the way it does, please feel free to share this with anyone you know that suffers fibromyalgia (FM)
In mid 2016 I discovered a small study where FM patients health was improved dramatically, so i contacted the Italian doctor on who ran the study on how to implement and what dosages.
Then during Christmas of 2016 after reaching dosage, I saw my wife perform huge amounts of physical work with very little pain, we had a little tears of joy moment once we realised.
Since then I have collected over 100 medical papers regarding the subject.
I have shared the refined protocol on a private facebook group to share thiamine related news and information about helping fibromyalgia, please join if interested.
The Italian Study
In a very small study by Dr Antonio Costantini in 2013 on Fibromyalgia (FM) patients of only 3 FMS patients they found the following:
• 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.
Their glucose metabolism of all organs goes back to normal values and all symptoms are reduced.
They deemed it necessary to prescribe a lifelong use of high doses of thiamine in the affected subjects. 2 of the patients never reported any improvement of neither fatigue until the dose was increased to 1500 mg/day.
Instead, an abrupt improvement instead occurred at doses of 1800 mg/day.
The therapy seems to be characterised by an ‘all or nothing’ effect. In other words, below a given daily minimum dose, there was no improvement observed.
So I emailed back and forth the Doctor that run the study and discussed how to implement and also much more research from other leaders in the Thiamine field and worked on my wife protocol.
I have continued to research Thiamines impact on metabolism and it affects many disease states, but continues to grow my knowledge of this under spoken about essential nutrient.
Thiamine B1 Protocol
Apart from the supplements mentioned below it’s ideal if your diet is lighter on the refined carbohydrates (ideally a low carb diet as high blood sugar levels blocks thiamine ability to enter the cell), and limit coffee/tea intake to 2 cups a day. (or less)
- Now Foods, Co-Enzyme B-Complex, 60 Veggie Caps – As directed
- Doctor’s Best, Magnesium, High Absorption, 100% Chelated, 120 Tablets – As directed
- Take a standard Multivitamin
Dosages of B1, in the study they raised thiamine slowly this is a water soluble vitamin the body will flush out what it doesn’t require. If you get too high you’ll notice issues falling asleep or headaches, in that case reduce to work out your optimal dosage.
This is the plan for the larger dosages of B1 Thiamine Hydrochloride (Please do not buy B1 Nitrite as when we switched to this my wife pain came back)
Note: Make sure its Hydrochloride as there are different types of B1 that don’t work as well, we found nitrate was useless.
By mixing the 100-500mg tablets step up the tablets 300mg every 3 days:
• 600mg for 3 days
• 900mg for 3 days
• 1200mg for 3 days
• 1500mg for 3 days
• 1800mg for 3 days / ongoing ← most stop here
The reason why Dr Costantini stepped up the dosage every 3 days is to see where you feel good at, as it can take up to 48 hours to experience the effects from an increased dose of thiamine. Again if you get too high for yourself it will make it hard to fall asleep at night, or get a headache then you drop down, my wife felt good at 1500mg and even better at 1800mg, and has maintained that level ever since. (you may even find 600mg enough for you it all depends)
If you are thinking that 1800mg is a lot but absorption wise it’s the same as getting 100mg injections ONCE a week.
In the end this is a water soluble vitamin the body will flush out what it doesn’t require, no one has ever died from an excessive thiamine overdose, in fact deficiency is more common that people realise.
The Science on why I think it helps Fibromyalgia
My working theory is that the vast majority of the pain symptoms in fibromyalgia are from a Pyruvate dehydrogenase complex (PDC) deficiency – caused either by mitochondrial inheritance, environment, external, genetic SNP mutations (e.g. SOD2 (Superoxide Dismutase 2), sugar intake, stressful environments.
And pending your ability to withstand these stresses, certain people are more prone to PDC deficiency.
Since Thiamine is meant to process the fuel into energy, because there isnt enough to meat demand all is partitioned into Lactic acid, which is the same painful hormone released during exercise, and I bet you that your pain can be described as doing a continued workout without a workout.
See image below for the fuel partitioning, as you can see it get trapped at the start rather than making energy it makes pain.
So looking at the image above with someone with CFS energy flows from Pyruvate to Lactate to create energy, the energy going to Acetyl CoA for all that wonderful ATP does not get there. This is one of the main reasons why fibromyalgia experience pain, it’s the increased levels of lactate, which is the same substance that your muscles produce it during intense exercise, It causes muscle fatigue and post-exercise muscle soreness. While this is so painful long term, it has been keeping people “functioning” lower energy and pain.
Once deficiency of thiamine has reached a certain level the body and oxidative stress continues to rise, as Pyruvate dehydrogenase functions depends on thiamine it makes up the energy difference by ramping up production of lactate to create ATP.
In order to resolve this feedback you need energy flowing correctly otherwise more tiredness and brain fog will be felt on any low carbohydrate diet.
For my wife the key was increasing the particular derivative vitamin thiamine hydrochloride to very higher levels after my research lead me to an Italian Dr Antonio Costantini in Italy found an 80% reduction in pain when done correctly.
It’s been a long road complicated and needs to be done in stages as the body is a beautifully intricate machine with the goal of maintaining function even in a metabolically broken state, and sadly for many in that broken metabolic state cortisol is often high, energy is low, sleep is hard.
Some of my notes RE – FMS Linking Thiamine Research
Eisinger published at least six studies on thiamine and fibromyalgia and/or chronic pain (most of which are not available electronically) in the early to mid 1990’s.
He concluded that the thiamine-dependent enzyme abnormalities he found in fibromyalgia were similar to those found in Wernicke-Korsakoff syndrome, a thiamine deficiency disorder associated with alcoholism. Thiamine deficiency is also found in Alzheimer’s and diabetes, and it can affect memory function.
Eisinger proposed that ‘complex thiamine abnormalities’ in FM could account for the “reduced nitric oxide (and impaired muscle relaxation and microcirculation) or glutathione (and muscle soreness), impaired glycolysis (and muscle fatigue), or even serotonin depletion (and decreased pain threshold) observed in FM.
Glycolysis abnormalities in fibromyalgia – Found increased pyruvate and decreased lactate production in FM.
These findings provide support that FM is associated with biochemical abnormalities which require appropriate metabolic therapy.
A rat study proposed that, in line with the known pathophysiology of B-1 deficiency, “a megavitamin therapy supports a neuron’s carbohydrate metabolism and therefore could be able to prevent or reduce alcohol-induced damages of hippocampal CA1 pyramidal cells in rat central nervous system.”
A french researcher 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.”
(2013) RD Barbara A. Monroe
Wrote a letter to the editor in the Journal of the American College of Nutrition called Fibromyalgia—A Hidden Link?
Said the following “Nutritional factors impairing B1 metabolism include mainly alcohol or excessive intake of carbohydrates. Transketolase (B1 dependent) abnormalities induce pentose pathway impairment and nicotinamide adenosine dinucleotide phosphate reduced (NADPH) deficit.
NADPH is involved in reduced glutathione (GSH) and nitric oxid (NO) synthesis and therefore in muscle microcirculation and antioxidant defenses. Pyruvate dehydrogenase (B1 dependent) abnormalities induce adenosine triphosphate (ATP) deficit. ATP is involved in phosphorylations (peculiarly B1 activation) and performances.
Thiamin deficiency is associated with brain serotonin depletion. Serotonin is involved in pain perception, mood and nutritional habits. It is noteworthy that pain and fatigue induce detraining that aggravates these metabolic abnormalities.”
In June 2010 pilot study , 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.
Dr. Costantini fibromyalgia study in 2013 https://www.ncbi.nlm.nih.gov/pubmed/23696141
I hope you will find this beneficial and keep and open mind, as watching the person I love with fibromyalgia pain is something I would never wish them to go through.
My wife is on my other supplements to for depression that she has also found helpful, but I wanted to focus this post on the Fibromyalgia side.
Below I will add any comments i get on people utilising this thiamine as I am made aware of it.
Thank you. Very good information supported by research. Recently came across this info. I have been suffering for 22 years . Doctors in my country, Trinidad do not know about Thiamine deficiency. I have spent so much time and money over the years trying to get healthy. Wish I could talk to you some more about this. Extremely grateful for the information for myself and my children ( 2 daughters).
Thanks Rose, so sorry you have been dealing with this so long, most of this sadly is missed because the manifestation is different compared to the historic manifestations. I did do an interview with a nutritional therapist and did discuss my wife story during the interview, let me know what you think and if you need to contact me please do.
Thank-you for writing this article! I hope it helps many people who suffer with Fibromyalgia. I have had CFS/ME for a year now and I have been researching this topic this whole year. I am watching your you tube video today and starting the B-1 protocol tomorrow.
Thank you for taking the time to write this report. I have been searching the internet for answers. I had my fibro under control for awhile, but it is back with a painful, chronic tiredness, all that is bad.. I ran across this B1 deficiency idea and it makes sense.. I have struggled for over 35 years with this curse. I am not getting any younger. Hope this works. Something that seems so hard can be so simple, I hope it is. I think doctors, most, don’t spend much time in researching ideas or nutrients as a way to help. I do have a doctor that practices natural medicines. He goes along with my ideas and that is very important.. He put me on hawthorn for blood pressure.. just took my first one, he said to let him know how it is working out.. thanks for your time.
Has anyone had to go over 1800mg?
Im up 1000mg sulbutiamine, 350mg allithiamine and 500mg b1 hcl, plus b complex, 500mg magnesium .
Things have improved with reduction of lactic acid build up in my quads, but i still get the ‘burn ‘ after 7 unweighted squats. Been titrating up over the past 8 months
Your recommendation is for higher doses oif B1 HCL,
which has some ability to cross into brain, but
not with same efficiency as other forns such as, Sulbutiamine
and TTFD. Is this because the target for FM is outside the brain?
Have you any thoughts about Sulbutiamine and TTFD for
brain/ CNC based issues and if higher dosages ar relevant
Hi John I have thought about it and tested out a mix to see if it can help more but haven’t tried dedicated dosage of ttfd as its more expensive and not studies to backup benefits but i still needed the higher dosage of thiamine hydrochloride as when dropped didnt yield the same result when doing a combination.