“No such thing as Fibromyalgia “

[Auriel]

I would have actually been grateful for all the supplement names? @PANOWLCHAP (I don't mind trying things to see how/if they have a positive effect). What is the name of the company that supplies them? (I'd like to have a look, I'm having a challenging time atm)

 

[Badger]

I would also be interested to look at the supplements, I've only been taking vit D and husk fibre. Supplements can get expensive but it would be handy to know what may help.

 

[Auriel]

Is it psyllim you're taking @Badger (it's just I was putting them in smoothies before as an advisory thing from the guy who was making the smoothie choices up)

 

[Badger]

Is it psyllim you're taking @Badger (it's just I was putting them in smoothies before as an advisory thing from the guy who was making the smoothie choices up)

Yes that's right, Psyllium, I didn't realize that I hadn't typed it in full. The tablets have been helpful for my bowel with the side affects of Lyrica.

 

[JayCS]

BETWEEN FIBRO FOG AND PAIN MEDICATION I DO WELL TO PUT A SENTENCE TOGETHER

Yeah, and you are doing well. And I can imagine using capital letters helps you see what you've written?

GRAB MY LEFT ARM THAT WAS EXTREAMLY PAINFUL BECAUSE HE DIDN'T BELIEVE ME. HE HAD TO CATCH ME BECAUSE I STARTED TO PASS OUT AND FALLING.

So I hope he then did finally believe you...!

I DID NOT PUT ALL OF THE INFO ABOUT SUPPLEMENTS I TAKE BECAUSE I DIDN'T WANT TO OFFEND ANY ONE. NOR THINK THAT THEY HAD TO TAKE THEM. THEY ARE FROM A COMPANY STARTED BY PEOPLE WITH FM BECAUSE THE OVER THE COUNTER SUPPLEMENTS WERE NOT BEING ABSORBED.

Ah, that info now makes it clearer where you're coming from!
Like Auriel, I'd also be interested in the name / slogan of the company to check.
I can't imagine or remember the moderators having a problem with this under these circumstances, cos you're not advertising for it.
Just cos some people in the company suffer from it too doesn't mean they make better supps, of course, altho it helps.
But most of us have co-morbidities that need to be considered too, like me my MCAS-intolerances - it's not possible for them to allow for everything.

 

[JayCS]

The tablets have been helpful for my bowel with the side affects of Lyrica.

Psyllium is also on Arseneau's dropbox list by the way....

Good thing about psyllium is it helps IBS-D if you take it with little liquid (that's me usually), and with IBS-C if you take it with a lot, so it's flexible and adjustable.

Difficult thing about it is taking it 2h within taking other supps sucks those up. Same with pectin.
As I have to spread my supps over all day and all night that's just not possible for me. So I avoid (or slowly get my gut used to) anything that causes bowl problems and I think I have other things that help.

 

[Auriel]

I can imagine using capital letters helps you see what you've written?

I can't imagine or remember the moderators having a problem with this under these circumstances, cos you're not advertising it

If you hadn't pointed out the capital letter thing Jay, I wouldn't have even noticed!!! (Good eye)

Nor me jay, nor me I always appreciated anyone letting us know of any beneficial things they've found.

 

[JayCS]

supplement names?

I would also be interested to look at the supplements, I've only been taking vit D and husk fibre. Supplements can get expensive but it would be handy to know what may help.

Yeah, it seems interesting to hear if someone knew exactly which supp does what for a certain fibro symptom, because it's rare for anyone to really be able to pinpoint that, and even if they can, it's extremely hard to apply that to someone else. So really study evidence is much more relevant than anecdotes.

It's also much more important to know from overviews of studies how, when and which form to take for best success and then individually adjust to your needs. You can take loads of supps in some multi-vitamin, multi-amino acid or "fibro" product, but it's a complete waste of money, because this is designed to make money, not to help.
That said, @PANOWLCHAP's intention is exactly that: to point out forms and hopefully dosages that claim to have been at least partly adjusted more for fibro needs than others. And that's what I'm very interested in checking. Like with dosages I often check with what good supp experts like Teitelbaum have suggested - if this company does that, then that's a win.

Supps that really help for fibro?? None of the many semi-proven fibro supps I take help my fibro areas (sleep, fog, fatigue, pain, IBS, anxiety, plus inflammation and antioxidants) - except GABA that is, and passiflora for sleep, but only if overdosed. The reason I did start taking almost "all" those supps again is because they were supposed to help with other things, and definitely did that to a limited extent - my lipids, my jaw inflammation, my blood levels, and others cos they helped my MCAS.
(All do many things at the same time (that's called "pleiotrope") and most of the ones studies find may be good for fibro help me with those other things.)
And I hesitate to recommend to try GABA, cos you need a good sense of your body first or prepared to learn that. And it'd only work if you had low serotonin and better if it passes your blood-brain-barrier.

L D N is the new exception - med, not supp, mainly anecdotal evidence, many miracle stories long made us skeptical, but (as written) it is definitely catching on as a good possibility to try.

 

[JayCS]

all the supplement names

it would be handy to know what may help

So really study evidence is much more relevant than anecdotes.

I'm not sure if I already mentioned it the other day, but consumerlab has a short list of supps with evidence to work. I don't think it's a good list, cos they always only cite one or very few, usually bad, studies - there are better studies around. But at least it's an unsuspicious source, and there's nothing I didn't/wouldn't try:

• vitamin D - if it's low,
• 5-HTP - possibly,
• creatine - slightly for muscle strength,
• CoQ10 - fibro generally,
• ALC - depressive symptoms (not anxiety or pain),
• SAMe - pain at rest and fatigue slightly,
• reishi mushroom powder - physical fitness,
• melatonin - pain & fitness at higher doses, but often stronger side effects,
• pycnogenol (= OPC = pine bark) - pain, stiffness,
• magnesium chloride spray - cramps, fatigue,
• capsaicin - pain
• Cellfood [?! - see below]

no evidence to help fibro:

• iron (only for low iron)
• ginseng
• ALA
• "Prelief" "even" worsens for some [well, can't anything worsen for some?]

Bad ones for me were 5-HTP and melatonin and would have been capsaicin, Cellfood sounds incredible silly, I would never have listed that.

 

[Badger]

@JayCS that's very helpful thank you

 

[PANOWLCHAP]

IT IS CALLED "TO YOUR HEALTH" HERE IS THE LINK.
IF THIS DOESN'T WORK JUST TYPE THEIR NAME INTO SEARCH HOPE THIS HELPS.

 

[sunkacola]

So really study evidence is much more relevant than anecdotes.

It's also much more important to know from overviews of studies how, when and which form to take for best success and then individually adjust to your needs. You can take loads of supps in some multi-vitamin, multi-amino acid or "fibro" product, but it's a complete waste of money, because this is designed to make money, not to help.

Exactly.


It's always welcome on this forum to state what has helped you as an individual, because that may give another person an idea of something they may want to try.
I only step in and correct if a person says that any thing applies to every person with fibro, because unfortunately nothing is known at this point that will have the same effect or lack of effect on everyone with fibro. Sure wish there were such a thing, so we all could either do it, take it, or avoid it! But so far, not yet. And it will take massive scientific studies across a huge range of fibro patients to come up with empirical proof that any thing affects us all the same.

 

[sunkacola]

IT IS CALLED "TO YOUR HEALTH" HERE IS THE LINK.
IF THIS DOESN'T WORK JUST TYPE THEIR NAME INTO SEARCH HOPE THIS HELPS.

I had to edit your post, @PANOWLCHAP , to remove the link, because outside links are not permitted on this forum. But it's fine to post what a person could type in to a search engine in order to find something, as you did in your second line.

 

[Auriel]

Thanks @PANOWLCHAP

 

[JayCS]

"TO YOUR HEALTH" HERE IS THE LINK.
IF THIS DOESN'T WORK JUST TYPE THEIR NAME INTO SEARCH

Ah, thanks very much!
Not easy to find, as there are 3 called this, so the link was a good idea, just on this forum it's necessary to leave out the www bits, because of fear of spam etc.:
For me wrong ones came up 1st (mytoyourhealth) and 3rd (tyh), the right one 2nd, when I add "fibromyalgia" the right one comes up first, that's e-tyh.

I can see what you mean - "David" had fibro and they've developed supp mixes that intend to target fibro-needs, so they call them names like Fibro-Q10, Fibro-D3 and Fibro-Care, and trademarked their specific formulas ("David's Fibro-Q10™") - altho actually there's nothing special about them.
Their choice shows they do know some of the (little) research there is: CoQ10, 5-HTP, magnesium, D3, are the main ones, then added extras for specific symptoms: probiotics, krill oil, quercetin, valerian, a mushroom blend, a Multi-Vitamin-Mineral, a joint formula.
They have used the magnesium types that seem more appropriate to people with fibro, malate and glycinate. And with a few they have used a more bioavailable form, like B6 and B12. However their main intent is certain combinations, and for that there is no evidence that these help, that these are specific for fibro or that these will help others except "David" himself, they are his selection, his version.

Generally, issues I have are them often using soft gels (not veg.), many additives (intolerances) and combination products (contain things that only fit to "David").

Specifically there are many "mistakes": It doesn't say which form of CoQ10, D3 is without K2, in the multi-mix they have K1 which most should avoid, they tout malic acid more than there is evidence for, they don't use ALA in the R- form.

Then, I'm not "David": I need a specific form of CoQ10, I don't tolerate 5-HTP, magnesium glycinate wakes some like me up (so mornings not evenings), probiotics & valerian don't work for me, the multi-mix contains 3 anti-inflammatory spices and an enzyme that I don't tolerate, the 7-fold vitamin/mineral mix Fibro-Care has 4 things in it I have much too much of or don't need, and 2 I need much more of.

(I haven't compared the pricing of let's say a mono-product like D3 without K2 that you can get anywhere, whilst that's even harder with mixes, altho if I'm really interested I compare those too.)

So, overall these products are the same as a forum posting about what has helped a single person. Good to hear if others are like "David" and get help from these. And interesting to have a peek. Again, thanks for sharing!