D-Ribose for fibromyalgia

[does-the-NHS-work]

Ribose has been said to provide help for fibro, does anyone find Ribose helpful?

[zephyrj13]

I personally find D - ribose useful . I use Cytoplan brand D-ribose. I don’t use it every single day but recently I have had some bad flare ups and am taking it regularly at the moment along with some other supplements to help and certainly see benefits. Everyone’s different but worth a try?

[desquinn Partner Volunteer FMAUK Trustee]

it made a big splash about 10 years ago and I was part of an event where we got Jacob T over to talk about it and put on an event. Unfortunately like so many other things the effects have not met the expectations. Placebo, small targeted cohort etc...

[does-the-NHS-work in reply to desquinn]

I agree with the Placebo effect, if something is taken, is providing the satisfaction you desire and has little side effect it can be very useful for overall wellbeing alone. I Take your point on the substance effect too and the small target.

[JayCeon in reply to desquinn]

Really Des, JacobT? Has he been over more often? Any other functional docs?

(As I say below ribose feels to me "just sugar", and I'm wary of it possibly increasing my lipids if I tried it regularly.)

[desquinn Partner Volunteer FMAUK Trustee in reply to JayCeon]

Yeah, and he was coming over 2020 but that did not happen. Suspect as he has just had his 70th he may not be traveling as much. But if he does then we should be in a place to know about it.

We were not committed to it but we got some TV exposure for the condition and nearly broke a venue

His analogies, explanations, and previous experience are worth listening to and he is an engaging speaker. Very much functional and supplement side of things.

[desquinn Partner Volunteer FMAUK Trustee]

For previous discussions this search can be worthwhile healthunlocked.com/fibromya...

[PenelopeClearwater]

It seems to have helped a tiny bit with my fatigue… but that could just be a coincidence 🤷

I’ve noticed I’m having more headaches since I started taking it - again, could be coincidence 🙄

Disheartening that there is never anything conclusively useful.

[PenelopeClearwater]

Have you found it to be useful?

[does-the-NHS-work in reply to PenelopeClearwater]

Interesting to hear your thoughts, I have not tried anything supplement but I do believe in supplement and placebo effects, my GP does too. Kind of feel if you think something is going to help - it will help you.

If any others in this group took a look at the CBT and mental health course with reading university on future learn, they recommend a book believe it is called mind of mood, great book to help individuals learn their habits and traits, put together by two phycologists in California. I will post the details.

I see desquinn has replied about placebo, my feeling it carries a lot of weight with belief and should not be ignored.

Thanks for your feed back on ribose, I am very susceptible to all medication, I have read this may be common with individuals in our group and like you do suffer with headaches, that I can normally remedy with a slightly lower dose.

what's a typical dose for you?

[PenelopeClearwater in reply to does-the-NHS-work]

I can’t say I really believe in the placebo effect for me - I’m too skeptical and generally think that things won’t work or make a difference 😅

But I do believe that everything works differently for different people, so the placebo effect can absolutely be of use - not pooh-poohing it! 🙂

[KimiJay]

Absolutely! Until I started using it many years ago I had crushing fatigue practically the whole time. I have always acknowledged that taking it gave me half my life back. I don't use it all of the time now but it is there to give me a lift especially if there is something more than usually stressful going on. It mostly works but I do not take it after about 4 pm.

[Tattyshazza]

It helps a bit ,it doesn't have an instant effect like say a cup of coffee would ,but if you use it every day for a week you gradually notice you're slightly less tired. It seems to work better if I take it in fresh orange juice in the mornings. It's not the orange juice ,I've tried them both separately . Do not add to a bottle of a fizzy water like I did ,had a massive volcano effect 🤣

[JayCeon]

I feel it gives me a slight booster like chocolate and sugar (Mars bar) used to, as it is a sugar. That creates the problem for me that I need to avoid sugar due to high lipids, and I haven't found out yet whether ribose counts. The other problem is when I take even only one of the recommended doses of (3x)5g, I quickly get gut problems. Others don't seem to, but that's me. So I've never been able to try Teitelbaum's protocol of 3 weeks. But I use it like others have said when I need a quick small booster, mental and/or physical.