D-Ribose

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
ViewsAskew
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D-Ribose

Postby ViewsAskew » Thu Feb 07, 2013 8:42 pm

I'd still say I'm unsure if it's helped me for sure, but my guess is that it helps me cut out the mild daytime symptoms that I usually walk off or squirm around with. I try not to take meds until at least 4 or 5 in the afternoon (that's getting up at 10-12 each day - when I get up at 8 or 9, I have to start around noon). But, I like to wait as long as I can. I get squirmy, I know it's time.

I've taken the D-Ribose, 5 grams, about 6-8 times. Each time, I take it when I notice the first squirmy feelings earier in the day than I want to take my meds. A few times I've taken my meds at the same time, so I can't count those.

Yesterday, I took it at 5 PM as I was getting some dinner ready. We at around 6, watched an episode of a shoe (45 minutes) and then I went back to work. I didn't take my first dose until 8 PM and I had no symptoms when I did.

I'll keep trying it to see what happens. I'm squirming now - it's 2:30 and I'm tired. I'm going to take it and I'll try to remember to report back.

Edited above- had the incorrect dose.
Ann - Take what you need, leave the rest

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rthom
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Re: D-Ribose

Postby rthom » Thu Feb 07, 2013 9:01 pm

thanks ann :mrgreen:

ViewsAskew
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Re: D-Ribose

Postby ViewsAskew » Thu Feb 07, 2013 9:44 pm

Pretty funny...I went downstairs, talked to hubby, decided to get a spot of tea, and came back up. Did I take the ribose? Nope! I'm still squirming!

So, just went downstairs to take it and did. Came up with cottage cheese and applesauce (my substitute for dessert, which is what I really wanted!).
Ann - Take what you need, leave the rest



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jul2873
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Re: D-Ribose

Postby jul2873 » Fri Feb 08, 2013 4:02 am

I've been using D-ribose regularly for about 4 weeks now. I take 3 grams every four hours (about) along with some other supplements--mostly the ones recommended by Dr. Sinatra in his book The Great Cholesterol Myth.

I am not taking any meds at all, just these supplements, and the RLS was progressing pretty rapidly--up at least 2 or 3 times in the night, and often not able to sleep even when I wasn't up.

When I started with the ribose, I first noticed that the jittery, can't-sleep feeling I had been having seems to have gone. I just don't have that restless feeling, which is gerat, and is allowing me to sleep better.

I am still having symptoms of rls although, as Ann has experienced, much less in the daytime. I'm pretty much okay during the day now. I can even nap, and then lay and read when I wake up. At night I still always wake up one to two hours after going to sleep with rls, but it seems a bit milder. Usually a half an hour up takes care of it. About half the time I wake up again but, usually, can go back to sleep within a half an hour.

I have good days and bad days, but the trajectory seems to have changed from getting more frequent and severe to getting less frequent and milder. Certainly, I am encouraged enough to keep with this regime of supplements.

I started with the D-ribose because of the Johns Hopkins study that is seeing if RLS patients have too much glutamate in the brain. With a bit of research I found out that adenosine helps regulate glutamate (I think they are both neuro transmitters). So maybe it's not that we have too much glutamate but not enough adenosine. D-ribose is a sugar that is mostly made up of adenosine. The only doctor I could find who wrote about ribose was this Dr. Sinatra, which is why I got his book and am following his suggestions for supplements. (I just had a checkup, and my blood pressure has dropped 25 points, and my cholesterol dropped 30 points--so there is this benefit too!).

As we all know, this is a tricky disease and there seem to be many variations of it. But for me, D-Ribose, along with Dr. Sinatra's other supplements--magnesium, C0-Q-10, and L-Carnitine plus recommendations for other vitamins--seems to be working for me. Not a magic bullet, but I am definitely feeling better and more optimistic.

I'm happy to answer questions. Good luck to everyone.

ViewsAskew
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Re: D-Ribose

Postby ViewsAskew » Sun Jun 23, 2013 7:50 am

I've used this many times now - never as a replacement for my meds, but to supplement them when I have light breakthrough and it's too early to take meds or if the meds aren't enough for me to get to sleep (such as last night - it's the worst part of my hormonal cycle and a few days are usually miserable even with a full dose of medication).

In each case, they have worked. I'd guess quickly, too - within 20-30 minutes. I use a powder and take 5 grams a time, slightly more sometimes (I measure sloppily). I add to juice or milk most times.

It could be wishful thinking - but I'll take it!

Edited above - the correct dose is 5 grams!
Ann - Take what you need, leave the rest



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Chipmunk
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Re: D-Ribose

Postby Chipmunk » Sat Jun 29, 2013 8:24 pm

What brand of supplements are you using?
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

ViewsAskew
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Re: D-Ribose

Postby ViewsAskew » Sat Jun 29, 2013 8:27 pm

I think I have the NOW brand. I looked at chewable versions, but they were a bit spendy for me.
Ann - Take what you need, leave the rest



Managing Your RLS



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badnights
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Re: D-Ribose

Postby badnights » Tue Jul 02, 2013 9:57 pm

I took it for a few days last winter - a powder by Bioenergy, 5 g in water once a day - and couldn't see any difference.
Beth
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ViewsAskew
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Re: D-Ribose

Postby ViewsAskew » Tue Jul 02, 2013 10:27 pm

badnights wrote:I took it for a few days last winter - a powder by Bioenergy, 5 g in water once a day - and couldn't see any difference.


I've only tried it when I was getting breakthrough and wasn't ready to take more meds. It could be placebo effect. Each time, I've been able to go back to what I was doing (including sleep one time) without symptoms until my next med dose.

I think that one of our other members was taking about 20 grams a day - so 5 grams wouldn't do much in the scheme of things.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: D-Ribose

Postby badnights » Thu Jul 04, 2013 4:37 am

I tried it that way tonight (as opposed to daily dose in the morning) since I was having unusually bad symptoms and there was half an hour to go before my 6 PM dose. The symptoms disappeared, but I also took my 6 PM dose early, plus I went to play a 6PM softball game, so I really have no idea which of those worked, or if it was something else entirely :D
Beth
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Chipmunk
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Re: D-Ribose

Postby Chipmunk » Tue Jul 16, 2013 11:44 pm

jul2873 wrote:I started with the D-ribose because of the Johns Hopkins study that is seeing if RLS patients have too much glutamate in the brain. With a bit of research I found out that adenosine helps regulate glutamate (I think they are both neuro transmitters). So maybe it's not that we have too much glutamate but not enough adenosine. D-ribose is a sugar that is mostly made up of adenosine.

Interesting theory - you may be on to something there!

That would explain why the amino acids that I take help me even though they contain glutamate.
Tracy

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the WED/RLS Foundation, and are not medical advice.

badnights
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Re: D-Ribose

Postby badnights » Wed Jul 17, 2013 6:47 am

Just thought I would copy some D-Ribose posts from a different thread, where they represent a straying off topic:
Re: The trouble with opiods
viewtopic.php?f=4&t=8470&p=68932#p68932

Postby Polar Bear » Wed Jul 10, 2013 6:34 am
D-ribose arrived today. Dosage says 1 heaped tsps (5mg) x 3 times daily.
It has been mentioned as being helpful for fibromyalgia as well as WED - I am hoping it may reduce breakthrough or take care of WED symptoms that start to show just before next medication is due.
I've taken first dose in some orange cordial and didn't notice any horrible taste, and will wait see what a week will bring for either WED or aches and pains of fibro. Three possibilities, good, bad, or indifferent. :)

Postby ViewsAskew » Wed Jul 10, 2013 10:32 pm
Polar Bear wrote:D-ribose arrived today. Dosage says 1 heaped tsps (5mg) x 3 times daily.
It has been mentioned as being helpful for fibromyalgia as well as WED - I am hoping it may reduce breakthrough or take care of WED symptoms that start to show just before next medication is due.
I've taken first dose in some orange cordial and didn't notice any horrible taste, and will wait see what a week will bring for either WED or aches and pains of fibro. Three possibilities, good, bad, or indifferent. :)

Hope it helps - I finished mine, so trying to find another source that costs less :-).

Postby Polar Bear » Thu Jul 11, 2013 12:01 am
I did not sleep more than one hour last night and hope that it is just a coincidence. My insomnia has been worse than usual during the last week or so.
Usually my lack of sleep is insomnia but this was WED symptoms, not severe, but enough that I had to get up out of bed more than usual with insomnia alone.

I will say that during the evening when I sometimes have an ongoing background anxiety in my arms, I noticed that this was absent.

But must be careful about over analyzing stuff, which is difficult not to do.

Yes, it is pretty expensive .... and quite bulky... but if it worked I wouldn't care if it was a cwt sacksitting in the corner :D

Postby badnights » Thu Jul 11, 2013 12:04 am
I tried it for a few days as a daily thing, no effect, only 5 mg x 2.

I tried 5 mg once for breakthrough, no effect.

I tried 10 mg twice so far for breakthrough, seemed to stop it in under an hour. I am right now doing the third time.

At least it's easy to swallow !

Postby Polar Bear » Thu Jul 11, 2013 1:48 am
I would use it on an 'as needed for breakthrough' to see if it worked except that it is also reckoned to be helpful for fibro.
If there is no obvious help for fibro then I will reconsider how I use it. And bear in mind also that you used the 10 mg dose.

Postby badnights » Sat Jul 13, 2013 12:59 am
The third time (as I posted the previous comment) it allowed me (or something allowed me) to fall asleep. My alarm woke me 45 minutes later (just a nap, I was in dire need) and the symptoms were flowing strong within 20 minutes... so about an hour of relief. But if my alarm hadn't gone off, I might have slept through part of it ...

Postby Polar Bear » Sat Jul 13, 2013 11:28 am
Only an hour of relief..... (sigh)
tho many's the time I'd have given my last penny for an hour's relief.
Beth
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ViewsAskew
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Re: D-Ribose

Postby ViewsAskew » Tue Jul 19, 2016 12:11 am

I am reviving this. Over the years (and clearly too many purchases) I have become a top review on Amazon. I can sometimes get items at a reduced price to review. Recently, I had an opportunity to try D-ribose for $1.00. I hadn't tried it again in a few years after writing about it above.

I took it twice recently, in the middle of the night, when symptoms had been uncontrollable with the meds. I didn't pay attention to how well it helped but my memory was that my night got better (but who knows why).

This weekend was miserable. Not much sleep and a lot of pacing and working. I was so tired last night - I really wanted to sleep. It was a pramipexole/gabapentin night. This combo usually works well on the first night and less well on subsequent nights. I was hopeful. I stayed up a bit longer than I wanted while doing something, only to find that my calm legs were now flailing. I had a teensy bit more pramipexole I could take, so I did, along with some kratom. An hour later, still squirming a bit. Not terribly, but I wasn't going to be able to sleep. I remembered the D-ribose and took 5 g. About 30 minutes later I went to sleep.

And, what a sleep! That was at 3 AM. At 8 AM, I heard my husband lock the door as he left for work. I usually wake up when he comes downstairs, makes coffee and cooks breakfast (when I'm on the couch, as I was last night). I didn't hear a thing. It was only the door sounds 8 feet from my head that finally awakened me. I stumbled to the bathroom and then went back to sleep. I awoke at 2 PM. Groggy and still not ready to be up. I took out my earplugs, took off my wrist wrap thingee (repetitive stress injury), and prepared to get up. When I awoke again, it was 3:30. Yikes!

I have NO idea the role that D-ribose played in all of that. But, it was the only part that I don't usually use. Kratom gives me 3-4 hours of deep sleep if I am lucky - not 12! And, gabapentin isn't enough to override the crazy brain activity caused by pramipexole. It helps, but I usually only get 4-5 hours max from it. This was unprecedented.

May not be replicable, but I will work with this more to see what happens. In a perfect world, I'd use it during the week when I awakened after 4 hours - that's when I rarely get back to a deep sleep and feel lousy tired even if I do stay in bed. If I could get good sleep at that point, I might be functional.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

debbluebird
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Re: D-Ribose

Postby debbluebird » Tue Jul 19, 2016 1:48 am

I will be interested to see if if this works again for you. Keep us posted.

ViewsAskew
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Re: D-Ribose

Postby ViewsAskew » Tue Jul 19, 2016 3:40 am

Will so. I am trying to take exactly the same thing tonight. But, if my normal meds work, I will wait to take it until I have issues (or if I have issues).
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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