Thiamine [Vit. B1] plus Pregabalin update

[bluffpt]

Hi to all. When researching "natural remedies" for RLS, one could end up taking a multitude of supplements etc and most likely with little/no effect. [I do take magnesium - not sure if it helps RLS but it should help to some degree with general soreness - i'm a PT and train myself 3-4 times a week].

Having said that, Thiamine is often mentioned and nutritional yeast is exceptionally high in Thiamine (and mostly protein and fibre - so v healthy in it's own right) - i'm disinclined to take many supplements as I am very sceptical as to their bioavailability (how much is actually metablaised and used). But natural yeast can be sprinkled on scrambled eggs, or a salad etc etc.

So i've only just started adding this to some of my meals and will report back if indeed it does help my RLS.

UPDATE on Pregabalin. I'm now up to 275mg/day from 225. Not much difference so far. I'm a little concerned because I have stopped training for 3wks now, to insolate the pain from RLS (rather than post training soreness). The Dr is happy to follow the advice of neurologist and i can take it up to 450mg/day. I feel i have no side effects (memeory not great anyway! and I wish it DID make me drowsy!!).

Bottom line, i am still waking after 1-2hrs sleep every night with discomfort/fidget or often varying degree of leg pain, whereby I have to get up (most nights) for an hour or more (take Zapain/codeine, or ibuprofen) and then go back to bed say 2 or 3am and usually then sleep until the alarm goes off at 5am.

I'm 58yrs old, and RLS has been worse over the past 5yrs or so. Ropinirole has been the only really effective medication but i came off due to some side effects and concern over augmentation. I then tried Gabapentin, before now using Pregabalin.

What has changed very recently, is my legs are quite painful during the day - it "feels" like sorenss from a workout the previous sday, but as stated, i have not trained foir 3wks, so this can only be down to RLS. Lack of sleep is though of course hugely detrimental to body's recovery, muscles included.

I'd be very interested if others have similar experiences. And as above, will update if Thiamine miraculously works to any degree!

Thanks in advance,

Nick

[Joolsg]

The gabapentinoids often do NOT work after years on dopamine agonists and augmentation. Experts believe DAs cause permanent damage to dopamine receptors.I wasted 5 years struggling with 25mg Oxycontin and 150mg pregabalin.

I still had VERY severe RLS.

You may have to consider a low dose opioid.

Many of us are now RLS free and sleeping well on low dose Buprenorphine.

[SueJohnson]

Joolsg is right but I wouldn't give up yet. Keep increasing it by 25 mg up to the 450 mg. If that doesn't work you need to come off it slowly like 25 mg every 2 weeks to avoid withdrawal effects. If you increase every 2 days you may be able to come down a little faster.

[bluffpt in reply to SueJohnson]

Thank you.

[Eryl]

No amount of suplements will eliminate your RLS if you're still driving it with an inflammatory diet.

[bluffpt in reply to Eryl]

I agree. My diet is mostly veg, with fish and dairy. Very few grain, bar organic steel rolled oats. Buckwheat (not wheat, or a grain) is a great substitite. Accordingly, my inflammatory markers in blood tests, are very low.

[Eryl in reply to bluffpt]

I think that you would see further benefits by cutting down on the oats. youtu.be/Faup23zVDJU?si=O1s...(Not working as expected?)

[DicCarlson]

Curious about your leg pain without exercise. Most all multi-vitamins have Thiamine and most all breakfast cereals are fortified with B Vitamins. My Nutritional Yeast is also fortified with B vitamins. Here is an article about other causes of leg pain without exercise (Lyme Disease, chronic fatigue syndrome, etc). I love when they mention "you're not getting enough sleep" - yeah, that's the problem! One they do mention is dehydration. Up your intake of water and electrolytes. I drink at least one 20oz bottle of water/day with 1/4 tsp. of sea salt.

livestrong.com/article/4071...

[bluffpt in reply to DicCarlson]

Many thanks, I will read with interest. (and yes... sleep is crucial to well being and recovery - of all sorts - and as you say, that Is a large part of the probpem!)

[Bluegerand]

I may be wrong but your leg pain could be due to sciatica or other problems with your spine due to your PT.

[Jauny]

Just a thought...I have developed some odd leg pains during the day too, but these have been diagnosed as sciatica. I, too, initially thought these were related to RLS. Perhaps yours are down to something else like that and nothing to do with exercise or RLS?

[Delilah162]

Hi Nick, Is it possible you could have any other underlying conditions? I only ask that as I have fibromyalgia and my rls and plmd really exacerbate my aches and pains as I’m tantamount to running a marathon in my sleep! Just a thought! I hope you get sorted! 😊