How I Found My Long-Lost Energy

Discussion in 'Fibromyalgia Main Forum' started by ProHealth, Feb 28, 2014.

  1. ProHealth

    ProHealth Member

    How I Found My Long-Lost Energy
    By Karen Lee Richards*

    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 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...

    Continue Reading Here
  2. Soul*

    Soul* Well-Known Member

    Just did a search on Thiamine before clicking through to the link.

    Thiamine is vitamin B1.

    That is probably more recognisable for people when reading above post. It doesn't mention that above.
  3. mbofov

    mbofov Active Member

    This is really interesting. I have CFS, not FM, but definitely have energy issues. I've had trouble with 2 B vitamins already - folate and B6. Even though I took a B complex for years and years, I found out that I was low in folate. Most people think that folic acid is the same thing. It's not - folic acid is synthetic and a large percentage of the population had difficulty converting it into a form useable by the body. When I started taking folate (in the form of Metafolin by Solgar), my energy picked up markedly. I'd already been taking methylcobalamin and continue to take it. I also had to start taking potassium as this caused a need for more potassium.

    I also found my energy picked up when I started taking vitamin B6 in the form of P-5-P - the bioavailable form.

    So now I'm reading that low thiamine may be a cause of low energy and because I've had these previous problems with B vitamins, despite supplementing for forever it seems, I'm really very curious to see if large doses of B1 - thiamine - would help more, perhaps even with crashing? Though that seems to be good to be true. But I'm going to give it a try.

    Another article I read about thiamine said that even if blood levels look okay, one can still have trouble utilizing thiamine due to an enzyme defect, hence the need for large doses. I read about a synthetic form of thiamine called benfotiamine, which is supposed to be especially helpful for diabetic nerve pain (I don't have diabetes). However, it is not used in the same way as regular thiamine and I'm going to stick with thiamine, although the benfotiamine may help others with diabetic nerve issues, and maybe nerve issues in general.

    I also read that thiamine and magnesium somehow work together and if one is low in magnesium, it can cause a thiamine deficiency, and I think the reverse is true - low thiamine could cause a magnesium deficiency. Sarah Myhill believes that low intracellular magnesium is a cause of crashing. Hair analysis shows very low mag levels for me; however an EXA test I just had shows normal levels - it's a puzzle! But, if this is related somehow to thiamine metabolism, then it could make sense - if I have the enzyme defect which prevents proper utilization of thiamine, perhaps the resulting low thiamine prevents the utilization of magnesium, even though I may have sufficient magnesium. Just a theory ----- but I'm going to try taking thiamine in the doses mentioned in the article and see what, if anything, happens.

  4. TigerLilea

    TigerLilea Active Member

    Does anyone know if the thiamine is taken as one dose per day, or divided doses throughout the day?
  5. ProHealth

    ProHealth Member

    Another reader had the same question, and Karen Lee Richards replied: "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."
    TigerLilea likes this.
  6. mbofov

    mbofov Active Member

    I took 200 mg. the other day and think I felt a little better, but actually it was hard to tell. I can't really say for sure.

    So yesterday I took 400 mg. all at once, and it didn't feel good. I got quite edgy - it was really noticeable. I couldn't relax, felt rather dark and just edgy. I couldn't enjoy the Oscars, which I usually love (although was very glad to see that Matthew McConaughey won for best actor - He was amazing in Dallas Buyers Club, a great film) I'm not 100% certain the edginess was due to the 400 mg. of thiamine but I'm pretty sure it was.

    I woke up feeling better this morning so just took 100 mg. and so far so good.

    I think it's good for me but may take some work to get the dose right. Perhaps I can work up to a larger dose.

    In any event, I wouldn't start out with a large dose all at once - it didn't work well for me.

    I should note that I have CFS, not FM, which may affect my need for thiamine - perhaps people with FM need more.

  7. sunflowergirl

    sunflowergirl Well-Known Member

    this is very interesting. I've taken a B complex forever.....everything in it has 100 mg except for the folate which has 400. I'm still very fatigued at times, especially when I have a lot of stress.....HA....HA. That's almost daily. So I'm wondering if I should take MORE of the B1 by itself?

    IAN: any comments?
  8. mbofov

    mbofov Active Member

    Sunflowergirl - it sounds like you may need more pantothenic acid. It's crucial for adrenal health. I take 500 mg. pantothenic acid in addition to a B complex.

    Also, your adrenals may be weak, it sounds like it since you're more tired when stressed. I know you know that it's important to minimize stress as much as possible - meditation is one of the best things you can do for stress, and it's free :) Also, very important to minimize caffeine, alcohol and sugar, all of which are hard on the adrenal.

    Also, have you ever tried an adrenal glandular? Several years ago my chiro who does muscle testing found I had very weak adrenals (I had been under severe stress for a long time and was weak as a kitten). The chiro gave me Drenatrophin PMG by Standard Process, I had to take about 3 times the regular dose, and within a couple of days my energy started to come back. It was amazing. I can't recommend this enough for weak adrenals.

    B complex alone was not enough for my adrenals (or anything else for that matter!)

    Also, does your B complex have folate or folic acid? Most have folic acid which is synthetic and cannot be utilized by a large percentage of the population (including me) - just saw that I wrote about this above. I now take 800 mcg. of folate (metafolin) in addition to 5,000 mcg. sublingual melatonin a day. It helps.

  9. TigerLilea

    TigerLilea Active Member

    Thanks! I wondered if possibly the body needed the punch of the really high dose rather than splitting it up over the day. The only problem is I can't find anything higher than 100 mg here in BC so I might have to order it from the US.
  10. mbofov

    mbofov Active Member

    TigerLilea - if I were you I would start slowly. I've now found that even 100 mg. is too much for me - it makes me a little buzzy and then wipes me out. I'm stopping it. I do take a B complex. 400 mg. did make me very edgy, way too much.

    I have CFS, not FM, so maybe people with FM will react differently, and we all are different. But I hate to think what I would have experienced if I had started with 1500 mg.

  11. TigerLilea

    TigerLilea Active Member

    Mary, I already take between 100 and 200 mgs per day and I haven't noticed any difference what-so-ever. I'm always reading of people having problems with vitamins and supplements (ie herxing, getting buzzy, sleepy, etc.) but I've never experienced anything like it. I also have CFS, not FM. I was doing some research on Thiamine and they have found that people with MS, Crohns, and IBS have also had great results with the high doses relieving their illness induced fatigue.
  12. mbofov

    mbofov Active Member

    TigerLilea - I'm really glad to hear that thiamine doesn't bother you in those doses. Maybe the high doses will help you! I'll cross my fingers for you --

    TigerLilea likes this.
  13. deepak

    deepak Member

    Hey Mary.

    How long did you take the Drenatrophin for and do you know how it differs from Drenamin ?

    I also have been taking some Std Process stuff.

  14. mbofov

    mbofov Active Member

    Hi Deepak - I took the Drenatrophin for a couple of months, as I recall. I started at a high dose (about 3 or 4 times the regular dose) and gradually eased off. I've had to take it off and on ever since, especially during periods of high stress (e.g., when my house flooded !)

    I think Drenatrophin and Drenamin are very similar, both are adrenal glandulars. As I recall (it's been many years) I think my chiro said it had something to do with blood pressure, why he recommended one for me over the other, but can't remember exactly. Okay, I just looked them up on the Standard Process website. Drenatrophin PMG is mainly an adrenal extract product. Drenamin has adrenal extract as well as several other ingredients. I've taken both at varying times over the years and have found both to be effective.

    I really do think I would have been bedridden without it an adrenal glandular.

    Good to hear from you!

    Last edited: Mar 12, 2014
  15. TigerLilea

    TigerLilea Active Member

    I ordered the 500 mg Thiamine from PH today. I just hope that it doesn't get sent to Sweden like my orders from PH have the last two times I've put in an order. I'm not quite understanding why delivery is 2 to 4 weeks?? when it is being sent by airmail and it should take only a couple of days to get here from California.

    I'll let everyone know how it goes once I get started. I know that back in October of 1996 my blood tests showed low thiamine. The doctor I was seeing at the time had me take 500 mg twice a day for two weeks and then stopped the treatment because he considered it a failure because my CFS symptoms weren't any better. All of his treatments were two weeks in duration which I realize now was not anywhere near enough time.