The problem with many experiments, especially for people with diseases like mine (CFS), is that you never hear what happened after an initial favorable report, and so are left wondering.
This is similar to what happens to news reports: initial enthusiasm over something interesting, followed by… Nothing!
***CAUTION: I have no medical training – take everything you read here as MY experience, and, if you are interested in trying B1, do your own research, consult your own medical people, read widely, and make your own decisions.***
[Also note: this is Invisible Disabilities Awareness week.]
As I appear to be one of the people with CFS (PWCs) who is BENEFITING from taking megadoses of vitamin B1, and the changes have been significant for me, and are still continuing, I am committing to reporting every couple of months until people get bored, I get completely well, or it stops working for me.
Many people appear to have good results – but I’m a writer and have a blog. I can’t stop myself from pouring details out in 1000-word chunks and sending them out into cyberspace.
I’d also like to hear other people’s results – and I dearly wish there were someplace medical we could all accumulate our anecdotal results and experience.
This is a long post because I want to be able to refer to it, so I put everything into it that I thought might be relevant.
Your results are welcome in the comments.
My status pre-B1
I have had CFS for 24 years. It cost me my career in physics – and my children have never really known a mother with enough energy to get through the day. It makes me a VERY slow writer for the fiction I’m working on (Pride’s Children – see tab above – and one of the three main characters has CFS).
cfidsselfhelp.org has a useful scale to quantify CFS symptoms. They have a simple Rating Scale, which you can download by going to http://www.cfidsselfhelp.org/library/type/log_forms_worksheets.
Earlier this year I would have assessed myself as close to a 30, better in some areas, worse in others, on their scale (I was much lower when I first got sick):
“30 – Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.”
If I kept it to not leaving the house more than 3 times a week, my ability to do things at home was not affected, but if I had to leave the house more than that (add a doctor’s appointment to church, yoga, and one tiny shopping trip) – the week was shot: I had to take extra naps before leaving the house, and if I didn’t get one as soon as I got home the rest of the day was shot.
I required 3-5 half-hour rests a day: my body temperature would drop, I would rest/force myself to rest for the half-hour, and then face getting up and waking up again – an exhausting task in itself.
I tried to make my writing the ‘2 hours a day of … activity’ – but with only that much functionality, and the long list of things that need doing just to be alive (food, very minor housework, phone calls, house…), the days when I could effectively write for a couple of hours were scattered at best.
Physical exhaustion, and the inability to stand for long were major problems: when I wasn’t exhausted, I found it very hard to force myself to do the things that needed doing. It is psychological: when your life is so restricted, you NEED some good things in it just to not go crazy, so I tended to do something that would make me feel good but wasn’t much work, like reading a book or playing a computer game. I know – no willpower – but willpower actually takes a LOT of energy (see post on Decision Fatigue). Needless to say, the backlog of ‘stuff to do’ is very long.
My status with B1
Somewhere between a 40-50 on the CFS/Fibromyalgia Rating Scale: I can leave the house more than 3 times/week without major problems – but still try to keep the number of outings as low as possible.
Some days I make it without any naps; others I take one nap – and time that either before or after one of my out-of-the-house experiences; once or twice I’ve needed 2 naps to compensate for bad night sleep or unavoidable extra outings.
I can do SOMETHING useful maybe 4-5 hours a day (writing, light housekeeping, phone calls) and be reasonably coherent doing it. I’m trying to spend the new energy on the writing first (and yes, I know that’s selfish – but a good writing day is a strong psychological booster, and I need those to face the other backlog jobs). I estimated 20% more energy; that is still a good estimate.
The exhaustion and brain fog are major problems (but better) – it still takes several hours for the B1 to kick in and my brain to be usable for a while. Decisions are a problem – each one uses up energy, so I try to get Freedom on (1 decision) to block the web vs. telling myself that I’ll only read a couple more websites (many decisions).
I have worked hard to get a semblance of a proper walking stride back (very long story for another day), and I’ve now added walking barefoot laps around my yard so I can get some physical conditioning back. Baby steps in more ways than one. But it does suck up some of my newfound energy.
I would dearly love to kick the functionality higher on the rating scale, but I am learning that I have to use what I have gained much better first. Maybe the 20% will be more like 30% effective increase when I learn to manage myself better.
How much vitamin B1 am I taking?
B1 Experiment Report: I’m taking 2600 mg. total as follows:
1500 mg. B1 + 300 mg. benfotiamine* – 9 am
500 mg. B1 + 150 mg. benfotiamine – 5 pm
150 mg. benfotiamine – midnight
I titrated slowly up from 250 mg. B1 a day for three days, adding 250 mg. more every three days. The total dosage necessary seems to be related to body weight or total blood volume. Smaller people (I weigh 185 lbs.) should need less. This is me – how to achieve the correct dose is not a science; I may be taking too much, but I don’t think I need more, as the results have not changed much toward the upper levels of the titration. I didn’t get much of an effect until around 1500 mg. B1 (and at that point hadn’t added the benfotiamine yet). I added the benfotiamine because of reports that the fat-soluble form helped more with pain.
*Benfotiamine is the fat-soluble form of B1
Unexpected benefits of taking megadoses of vitamin B1
Quality of sleep: I’m dreaming vivid dreams, usually awakening to one still going on, which I get to enjoy for a bit before getting up (I love dreams – they’re my brain telling me stories). The sleep is 20% more restful – if I had to quantify it. Except for the times I fight going to sleep – and thus keep myself awake past the optimum point, and then have to wait for the next cycle – I’m getting to sleep faster. I’ve added an eye mask, making sure I’m not hungry, and limiting liquids – and the total effect is better sleep. Usually.
Body temperature: I used to have daily cycles of body temperature, so marked that they served as reminders to rest. I’d be sitting at the computer, realize I was freezing, add more clothes – and then finally the brain would say, ‘Remember – this means take nap.’ Rinse and repeat up to 5 times in a day. The daily clothing routine was on again, off again with the sweatshirt – all through the day. The body temperature is now stabilized – I rarely have that cold feeling.
Pain levels: This was unexpected, too, even though Karen Lee Richards’ FM report on B1 WAS mostly concerned with pain – her fibromyalgia pain was largely relieved by the B1. I thought I had pain under a reasonable control with Celebrex 200 mg. twice daily; but every morning I used to wake up with joint pain that hurt more while I was trying to work it out with gentle bending and stretching. Now I wake up stiff, but mostly without pain, and working the pain out just feels like needed limbering up, not like the torture it used to be. Note: this benefit came ONLY when I added the benfotiamine.
Expected benefits of taking megadoses of vitamin B1
Brain fog: It is better, but that is hard to quantify. I seem to get more time daily with the capacity to think. I’m trying to learn how to use it, make it last, not waste it. But I am not ‘well’ or ‘normal’ and it is still a major struggle. I have periods – especially when I concentrate on one thing, such as writing, or paying bills – when I can function: removing the distractions of trying to deal with everything at once helps. The mind wants everything to be ‘all better now,’ and it just isn’t so. I’ll report later on my efforts to USE my increased capacity more wisely. But I can FEEL it – it is better. I hope when I get over some of my bad habits (as I’m learning to do), I will get ‘more’ done. Meanwhile, though, the struggle seems easier: I AM doing more. I participated in a writing challenge (Web Serial Writing Month) during August, and while I didn’t quite make my goals, I couldn’t imagine even trying a challenge in previous years.
Napping: As I said, not having to take so many naps also means I don’t have to deal with the process as many times a day: figure out I NEED the nap now (sometimes done by scheduling), getting ready by making sure my clothing was not restricting and blocking out light and noise, taking the rest, getting up and waking up and getting mentally back to where I was. The process, 3-5 times daily, used to consume a lot of my time. It was necessary – it was the critical behavioral technique that allowed me to have a little good time: after each nap, there would be a usable period; before each nap I wasn’t getting anything done anyway.
Exhaustion: I do spend less time feeling so utterly exhausted that I can’t even hold my head up. That is a blessing. Before, I had to manage myself so very carefully with all the behavioral techniques (pacing, resting, watching the energy envelope) that it was almost a full time job, even if it did allow me to function somewhat. But it left little usable time, and I was always frustrated because days slipped by just existing. More people weren’t aware of it because, like all people with this, I mostly stayed home an off the radar.
Coherence: a comparison to my earlier posts should show this (I hope). Some of them I will probably end up using for a book on the subject – and then deleting (or leaving, but noting they are part of a historical record).
In conclusion: will I keep taking B1?
If you ask the people I know, they can all tell the difference. I’m (foolishly?) doing a couple more things than I used to be able to do (going out to lunch with a friend, volunteering for a job with a group I’ve belonged to for a number of years but have never had extra energy to give). I have to watch those – it is good to feel better, but I have my writing to do. But it is also good to give a little, and not just take all the time.
I won’t give up the B1. I wish we knew more about it and how it works – my use has been entirely self-created, and I would love someone in the know to guide me. I am looking forward to possible even better use of me as I learn where my new boundaries are. I hope I can also find other ways to continue to improve.
Yes, I will continue to take it. And I will keep reporting.
If this improvement is all I ever get, I am so happy to have found it.