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How I Found My Long-Lost Energy

  [ 120 votes ]   [ 27 Comments ]
By Karen Lee Richards • www.ProHealth.com • July 3, 2013


How I Found My Long-Lost Energy

As a 24-year veteran fibromyalgia patient, I became accustomed to not having much energy.  For many years the fatigue was so bad, most days it was a struggle just to get out of bed.  Then a few years ago, I began taking Ubiquinol (CoQ10) and NADH.  They helped quite a bit, increasing my energy levels enough that I was able to continue supporting myself by working from home on a computer.  But doing that work took up just about every ounce of energy I had gained.  There was very little left over to do much else. 

Then a little over a month ago, 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 reachers in Italy.  In fact, the study was so small – only three FM patients – that I normally wouldn't give it much weight.  But the dramatic improvement in fatigue and pain levels experienced by all three participants piqued my interest. 

Below 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.

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 out 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's what 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.  Within 24 hours of taking my first 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 can honestly say that my energy level now is much, much better than it has been in 24 years! 

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?” 

While 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. 

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.

Photo: Copyright (c) 123RF Stock Photos



Please Discuss This Article:   Post a Comment 

Thiamine supplement for fibromyalgia
Posted by: Haribo36
Jul 3, 2013
I have just read this ladies experience with taking thiamine and I must say that I feel very enthusiast about the article and her experience.Iam very keen to try natural supplements and Iam going to give it a try for myself.
Reply Reply

Just a little confusion...
Posted by: eljulia
Jul 3, 2013
I've been told Fibromyalgia ISN'T a disease of inflammation and ISN'T autoimmune related, but instead is from an overactive central nervous system. So now i'm a bit confused--if this vitamin B1 helps with inflammation and autoimmune conditions, and works with fibromyalgia, then IS fibro an inflammatory and autoimmune condition? My rheumatologist says it isn't.

So confused.
Reply Reply

 
overactive or inflammatory
Posted by: IanH
Jul 4, 2013
An overactive nervous system does not mean very much. There is a "central sensitization" theory meaning that that nociception (the perception of pain)is elevated. However many people with FM are not more sensitive to normally applied pain stimuli, in fact some are actually less sensitive when compared to non-FM controls. Indeed some are more sensitive. This tells us that heightened nociception is not the key to FM.

Anyone who says that Fm is not an infallamtory disorder has not read the literature of research. Clearly the cause of the condition is not known but the evidence for FM being a symptom set of an underlying neuro-inflammatory disease is quite strong.

Firstly substance P is a neuro-inflammatory protein which acts on the neurokinin-1 receptor. Substance P is highly elevated in FM as it is in other neuro-inflammatory conditions. (Some say substance P is a pain elevator but there is no evidence for this idea).

Vasoactive neuropeptides act as hormones, neurotransmitters, immune modulators and neurotrophes. They are readily catalysed to small peptide fragments. They and their binding sites are immunogenic and are known to be associated with a range of autoimmune conditions. They have a vital role in maintaining vascular flow in organs, and in thermoregulation, memory and concentration.

Recent studies have shown a significant vasoactive problem in FM and many do have peripheral neuropathy which in many cases has been shown to be the result of arterial shunting. This shunting is dysfunctional in FM and hard to explain without involving the neuropeptides and other cytokines such IL-1.

While visual signs of inflammation are mostly absent, the immune inflammatory system is upregulated. Anyone saying that FM does not involve inflammation must go back and study more immunology.

It is also known that people with spinal injury and stenosis often suffer from FM. Such people have raised levels of these vasoactive peptides. Basically the damage or pressure on the spinal nerves is causing an immune system involvement.

Bare in mind also, that 40-45% of people with ME/CFS meet the standard criteria for FM. The imune markers of ME/CFS are becoming clearer by the day.

The studies of Prof. Alan Light and others have clearly shown that during exercise, people with FM have significantly elevated immune system markers for many hours, even days after the exercise compared to non Fm controls.

Hence FM is not really a disease, it is a symptom set of an underlying disease which varies from person to person. There is obviously genetic factors but genetic factors does not = disease. In one sense FM is state of immune system attack on neuro-muscular and neuro-vascular tissue but whether that means it is auto-immune is not known.

 


Question on Dosing
Posted by: Shannah
Jul 5, 2013
Is the dosing split up during the course of the day or taken all at once?
Reply Reply

Dosing
Posted by: FMeditor
Jul 5, 2013
I've been taking the 1500 mg all at once. The study didn't mention splitting it up so I went on the assumption that it was once a day. It works very well for me this way and I haven't had any negative side effects. – Karen Lee
Reply Reply

 
B1
Posted by: sflood
Jul 6, 2013
What form/brand of b1 are you using?

 


B-1 Brand
Posted by: FMeditor
Jul 6, 2013
I'm using the Source Naturals High Potency B-1 from ProHealth. Here's a link to it: https://www.prohealth.com/shop/product.cfm/product__code/N0565

– Karen Lee
Reply Reply

 
B1
Posted by: sflood
Jul 7, 2013
Thanks!!!

 


B-1 Therapy
Posted by: goodcasey
Jul 8, 2013
After reading @ B-1 I took 4-395mg capsules at 3pm Sat and woke up Sun feeling the absolute best in 2- 3 years! Like someone turned the lights on. I had so much energy and motivation, it was fantastic! I took another 4 caps @ 395mg and felt tired today. My body wasn't used to the exertion and I was tired, but normal tired, not crashed. I did cut back to 3-395mg today to see if I feel better tomorrow.I did feel fuzzy brain today, but very exciting to have some energy. Thanks for the info.
Reply Reply

B1 dosage
Posted by: TigerLilea
Jul 14, 2013
The dosage should be split up throughout the day as your body can only use so much of the B1 and the rest of it will be flushed out in your urine. By doing three or four smaller doses throughout the day your body will use much more of the B1.
Reply Reply

High-dose Vit B1 (thiamine) to combat CFS/ME/FMA
Posted by: Tiredchris
Jul 22, 2013
I have suffered Hell's flames through CFS/ME/FMA since 1986. I Have Just tried "Sea Buckthorne",recommended by a homeopathy book,which is expensive (by the standards of someone who's just staying alive on State Benefits),And Didn't work,sadly.
- I'm Trying a Lot of food supplements as well,such as 'green tea' & sea-kelp and brazil nuts and almonds & Glucosamine sulphate & Omega 3 capsules (which Havn't Noticably worked,either),
So, I'm going to Try (Very soon) 15,000mg's of Vit B1 (Thiamine) per day,starting in Approx 4 Days.... I'm Going to have a word about the matter with My GP,in approx 4 day's,Too...........
- Lets Hope its NOT even More wasted £££.
Reply Reply

 
The Last article by Myself........ Tiredchris
Posted by: Tiredchris
Jul 22, 2013
Sorry,I MEANT to say 1,500mg's of Vit B1,per day;NOT 15,000mg's per day.......
- SORRY........ :)

 


High-dose Vit B-1
Posted by: FMeditor
Jul 23, 2013
Hi Tiredchris – I'd like to clarify that 1,500 mg of B-1 was the dose that worked best for me but different people seem to respond better to different doses. For example, the lady in the study who experienced the greatest improvement only needed 600 mg, while the other two ladies did best at 1,800 mg. My best suggestion would be to start at 500 mg for two days and increase it as needed every two days until you notice a difference. The reason for waiting two days to increase the dose is because it can take up to 48 hrs. to see an effect with B-1. I sincerely hope it works for you as well as it has for me. – Karen Lee
Reply Reply

 
Chronic Fatigue Syndrome/Fibromyalgia/Fibro fog.
Posted by: Tiredchris
Dec 31, 2013
I took on average,1,800mgs of Thiamine (B1) for 21 day's,and I might as well as taken 1,800 chocolate drops...... :(
- I am VERY short of money. I Shan't be buying Any other food supplements that Any other person recommends on here.... :(
- Some of us dont have money to burn,especially with world nergy & water prices being as high as what they are,and State Benefits being as low as they are..... :(
Good luck to You All....

 


Thanks for B1 information
Posted by: Coachme
Jul 25, 2013
I just got my shipment of thiamine in. I am looking forward to trying it. Fingers crossed. I admit I am cautious because I have been sick a long time and I have tried multiple supplements to no avail. However after reading more about this I think it is definitely worth trying. Thank you so much for providing the information. I noticed Health Rising is doing a survey of those trying it so if you try it please fill out the survey.
Reply Reply

Staying connected to B1 information
Posted by: liebja
Aug 10, 2013
I've been using B1 since I found your article (and did a bit of research).

I am having relatively good results with:

2000 mg. (1500 am, 500 pm) of B1 PLUS
300 mg. (150 am, 150 pm) of benfotiamine (the fat-soluble form of B1). Solgar for the B1 and Source Naturals for the benfotiamine.

I have at least 20% more energy, and, since I added the benfotiamine, a huge decline in muscle pain.

I want to know why it works, how to stay connected, long term problems (if any), whether it is still working for you (some people I know using it have reported it stopped working) - in other words, everything.

This is the first time in 24 years I have any kind of hope - and any kind of significant improvement.

I started in mid-July and have worked myself up, 250 mg a day, 3 days for each new level.

Do you know of/should we start a data-gathering group? I am keeping very detailed notes - and won't increase any more for now.

Note: I have CFS - but not FM. And the CFS pain has been reasonably-well controlled with Celebrex (200 mg twice a day) for years - but now I can even see reducing that dose.

This is exciting: what do we do now?

ABE
Reply Reply

Hives and Thiamin (B-1)
Posted by: lynnwannafly
Sep 8, 2013
Hi Karen Lee,

Thank you for sharing your story. I have CFS and fibromyalgia. Vitamin B-1 has helped me tremendously. Unfortunately I may have run across a snag. I have had hives on my legs for the past 6 weeks. They showed up about 10 days after I started the B-1 protocol (1500 mg).

I originally thought I was having an allergic reaction to swimming in a lake. But the hives have not resolved. My doctor doesn't know what to do.

I was wondering if you could give me the contact information for Dr. Constantini so I could ask him if he has seen anything like that? I sure would hate to give up this therapy. It has changed the quality of my life.

Lynn
Reply Reply

 
Thank you Karen
Posted by: lynnwannafly
Sep 11, 2013
Thanks for the info. I'll post again if I find anything out.

 

 
Hives and Thiamin (B-1)
Posted by: FMeditor
Sep 10, 2013
Hi Lynn,

I'm so glad to hear B-1 has helped you but sorry to hear about the hives. I sure hope it's not the B-1 since it's helping you so much.

You can get Dr. Constantini's e-mail address from the abstract of his study on PubMed. Here's the URL for the abstract: http://www.ncbi.nlm.nih.gov/pubmed/23696141

I hope he's able to help you.

Karen

 


Low thyroid and B-1
Posted by: lynnwannafly
Sep 14, 2013
I think I may have found the answer to the hives after doing the high dose B-1 protocol. I contacted Dr. Constantini and he replied that he has not seen any hives in the patients that he has worked with.

So I googled my medications with the word hives. It turns out there is a lot of talk about curing chronic hives with thyroid hormone. Then on googling more, it turns out that one of the side affects of thiamine is to lower thyroid production.

Voila!

I am hypothyroid and take armour thyroid. My doctor upped my dose yesterday and I think things are going back to normal for me. I am having another good day and think that the thiamine may have changed my whole life. Woo-Hoo!

If you haven't looked into this yet. I would highly recommend it as a low risk - possible high gain treatment.

Lynn
Reply Reply

Thiamine
Posted by: PamJ12
Nov 25, 2013
Karen, or anyone - can you tell me what the status is with Thiamin treatment? Is anyone doing a larger trial? Is the Thiamin still working for you??
I ordered my Thiamin, but have to wait a week - it is on back-order. I am not very well-connected, but I don't understand why I haven't read more about this.
Thank you :)
Reply Reply

Answers to Thiamin Questions
Posted by: katkar
Dec 16, 2013
The Italian research team is continuing to study the use of thiamin to successfully treat the fatigue that accompanies a number of diseases – most recently inflammatory bowel disease and Hashimoto's thyroiditis. As far as I know, they are the only ones doing this type of research. I suspect the reason you haven't heard more about it is that these are still very small initial studies. I hope eventually they will be able to expand their research to double-blind studies with more participants.

Yes, the thiamin is still working very well for me. I have recently been able to lower my dosage from 1500 mg/day to 1250 mg/day with no decrease in energy. – Karen Lee Richards
Reply Reply

Question
Posted by: AnnettePK
Feb 28, 2014
What form of Thiamine was used in the Italian study?

The Source Naturals Thiamine contains a significant amount of magnesium. Magnesium helps me greatly with pain and energy; I would probably rank it the third most important supplements I take, after lipoceutical glutathione and Ubiquinol.
Is it possible that some of the improvement folks are experiencing is due to the magnesium?
Reply Reply

B1 - thiamine
Posted by: ukbutterfly
Mar 4, 2014
Well, after reading this article yesterday I have decided to take the plunge and start on this extra-dose vitamin, could only get 500mg but will wait three/four days between any change and see what happens - willing to try anything to get my energy back
Reply Reply

 
energy
Posted by: lwallace929
Apr 4, 2014
Karen-I'm taking 2000 mg a day with no noticeable increase in energy. I'm wondering about the NADH you mentioned. Hate to increase the B1 anymore, taking so many supplements, It makes me wonder what is working and what's not! I lost your email, but if you see this, please answer :)

 


Reply to lwallace929
Posted by: katkar
Apr 4, 2014
lwallace929 – I know what you mean about taking so many supplements you're not sure what's working. I try to add new supplements one at a time so I can better tell if it's helping. I've been taking the NADH for quite awhile now. I started it mainly because Rich so strongly recommended it. I didn't really think it was doing that much until I stopped taking it. A couple of weeks after I stopped, the fatigue got quite a bit worse so I quickly ordered it again and am now careful not to run out.

On the B-1, are you taking the Source Naturals brand? The reason I ask is that it also contains 100 mg. of magnesium. Apparently thiamine doesn't work well without sufficient magnesium. When our Source Naturals brand was on backorder, I tried a different brand that didn't have the magnesium in it and I could tell a big difference.

The supplement combo I take for energy each day is Ubiquinol CoQ10 - 600 mg., NADH - 12.5 mg., and B-1 with magnesium - 1500 mg. That combo seems to work well for me. I no longer feel so drained that I have trouble even dragging myself out of bed. I'm actually functioning pretty well most of the time. I hope you're able to find a combo that works as well for you! – Karen
Reply Reply

 
Anti-Thiamine Factors
Posted by: dannybex
May 21, 2014
Perhaps one of the reasons that patients are requiring varying high dosages of thiamine in order to be effective, is that they might be eating food that contain or are contaminated with anti-thiamine factors.

There are indeed quite a few anti-thiamine (thiaminase) compounds, including foods or herbs like Horsetail (silica), Red Fern, Blueberries, Chicory, Red Currants, Beets, Brussell sprouts, Red cabbage.

Also molds found in cereal grains, including wheat and corn and their by-products contain strong thiaminase enzymes. And another reference noted that "thiaminase enzymes are most often 'found in colored plants'...'the anti-thiamine activity is bound to phenolic compounds'. So perhaps if one eats a lot of foods high in salicylates and/or phenols, then it may be helpful to avoid some of those foods.

Finally, Dr. Derrick Lonsdale M.D., considered by many to be the country's authority on thiamine, found that if he gave high-dose thiamine for several months to a year, that it caused some of his patients to develop deficiencies in folate and B12.

 



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