“No such thing as Fibromyalgia “

[Auriel]

Unscrewed I love it!

 

[PANOWLCHAP]

FIND DR THAT BELIEVES IN FM. ALSO LOOK UP POLYMYALIGA REHUMATICA, MAYO CLINIC. TEST SED RATE. THERE ARE SUPPLEMENTS THAT CAN HELP. THEY NEED TO BE IN A FORM THAT FIBROS CAN ABSORB.

 

[sunkacola]

FIND DR THAT BELIEVES IN FM. ALSO LOOK UP POLYMYALIGA REHUMATICA, MAYO CLINIC. TEST SED RATE. THERE ARE SUPPLEMENTS THAT CAN HELP. THEY NEED TO BE IN A FORM THAT FIBROS CAN ABSORB.

It is true that for some people certain supplements can help. It takes a long time and some patience to find out which ones, because everyone with fibro experiences things differently. But if you do find something that helps it's worth the time spent.

Panowlchap, please remember that all people are different, and all fibromyalgia patients are different. So to say " they need to be in a form that fibros can absorb" is not accurate as a statement.

Every fibro patient is different. Some things work for some and not for others. No two patients will necessarily absorb supplements the same, so there actually is no form of supplements (or anything else) that is easier or less easy for people with fibromyalgia to absorb.

 

[PANOWLCHAP]

HI, I MADE THAT SUGGESTION BASED ON INFO I READ SOME TIME A GO THAT PEOPLE WITH FIBRO HAVE TROUBLE ABSORBING SUPPLEMENTS. THERE ARE WAYS FOR THEM TO BE MADE FOR EASIER ABSORBTION FOR ALL PEOPLE . I GUESS IT WAS TO MUCH TO HOPE TO POST ON A FORUM AND NOT BE PUT DOWN BECAUSE I SAID SOMTHING THEY DIDN'T LIKE. I SHOULD JUST QUIT POSTING I'LL JUST WON'T COME

 

[BlueBells]

Hi @PANOWLCHAP

I read one of your other posts, regarding your mother and brother etc.

Please understand @sunkacola was not intending to pick on you, nor to make you feel unwelcome.

You will find these forums quite supportive. We all have crazy backgrounds, some better than others, but we are all here to learn and support each other.

Please feel welcome

 

[sunkacola]

I will always correct misinformation when it is posted on this forum. This is part of my job as Moderator and it's important because people come here from all over and if they just read one post with misinformation in it and no follow-up correction, they may go away with a misconception that may not serve them well. It is never because I don't like what someone said, only if it is not accurate. It's never a put down, in fact, it's never personal to the individual who posts the misinformation.

I personally am always happy when someone corrects me if I am wrong, because it gives me a chance to learn something.

 

[JayCS]

THERE ARE SUPPLEMENTS THAT CAN HELP. THEY NEED TO BE IN A FORM THAT FIBROS CAN ABSORB.

no form of supplements (or anything else) that is easier or less easy for people with fibromyalgia to absorb.

PEOPLE WITH FIBRO HAVE TROUBLE ABSORBING SUPPLEMENTS
THERE ARE WAYS FOR THEM TO BE MADE FOR EASIER ABSORBTION FOR ALL PEOPLE

Well, I'd say all of this is sort of true.
It's true that many supps have forms that are absorbed better or worse by most people.
It's true that we as fibros esp. should find and watch out which forms may be better absorbed by us.
It's true that there is as yet no definitive proof that any supp form is better for people specifically with fibro than others.
Closest to this is magnesium malate which has been shown in one or two studies to help people with fibro better than other forms. That's not the same as "absorbed better". But it actually is also one of the forms of magnesium that is also absorbed better, whilst forms like magnesium oxide are definitely absorbed worse by everyone, so also by people with fibro.
It's true that some people with fibro seem to have trouble absorbing supps, however not medically proven (I think).
It's true that people with gut problems have trouble absorbing supps, and many of us have those, it's part of the criteria of fibro.

Main examples of more common "fibro/energy" supps that have better forms, most better "absorbable" are:
ALA, B2, B3, B6, B9, B12, D3, Mg, Ω3, PEA, CoQ10, Zn, in fact more than half.
For me, B2 and CoQ10 work better in the "not-better" form, which there is also evidence for for certain people. (Amino acids, like ALC vs. L-carnitine or which type may work best for serotonin is another matter.)

So all that considered, I do think it's forgivable and definitely a service
to point out that supps have better absorbable forms, which then also will be true for people with fibro.

It wasn't meant by anyone, but if it had been, I wouldn't think it suitable here to say that supps don't work or their forms work differently, just cos conventional mainstream doctors hardly know anything about this incl. the medical evidence (for some ample, for some slight).

 

[Auriel]

@PANOWLCHAP you don't need to stop posting (something was just corrected that's all) you can be part of the community, we always welcome new members ( I donate to the forum now and again as a way to keep it going)the forums important as a way for people with this annoying debilitating condition to connect with eachother

 

[sunkacola]

So all that considered, I do think it's forgivable and definitely a service
to point out that supps have better absorbable forms, which then also will be true for people with fibro.

It wasn't meant by anyone, but if it had been, I wouldn't think it suitable here to say that supps don't work or their forms work differently, just cos conventional mainstream doctors hardly know anything about this incl. the medical evidence (for some ample, for some slight).

My point was that there is no one thing that is more or less absorbable for all people with fibro, just as there is no one thing that is helpful to all people with fibro.

actually is also one of the forms of magnesium that is also absorbed better, whilst forms like magnesium oxide are definitely absorbed worse by everyone, so also by people with fibro.

If something has the same effect, or lack of effect, or is harder to absorb, or easier to absorb for everyone , fibro or not, then there's no correlation to people with fibro.

It's true that some people with fibro seem to have trouble absorbing supps, however not medically proven (I think).

Correct.....not medically proven. And very much an individual thing.

And in order not to beat this subject to death, I am closing this thread. If you think there is a good reason to keep it open, please message me and tell me.
Thanks.

 

[Dooi]

I've re-opened the thread to illicit further conversation should anyone wish to do so. @sunkacola please feel free to close the thread if we're beating a dead horse

 

[Rainbow]

I've re-opened the thread to illicit further conversation should anyone wish to do so. @sunkacola please feel free to close the thread if we're beating a dead horse

I am a dead horse lol

I do understand how Panowlchap may have misread/misinterpreted the response, as I have done that & felt that way myself in the past. However, having thought it over at the time & since, I have to acknowledge that as well as being 'Environmentally Sensitive', which can be & often is, one of the facets of FMS - I, we (?), can also be hypersensitive on many other levels too, so 'correcting' someone, although done for the right reasons & well-meant, is a delicate matter & needs to be expressed in a gentle way, so as not to be taken as patronising etc.

Please Panowlchap come back,
I nearly left too but am now glad I stayed, as I still find out important things that are relevant to me, so it's well worth staying.

 

[JayCS]

Cort Johnson (healthrising) has this year been reporting more money is now going into ME/CFS & FM.

Last Friday he blogged "How to Decide Which Treatments To Try for ME/CFS and Fibromyalgia: The Ric Arseneau Talk" - an essential question.
It summarizes a 1h28 talk on youtube called "Medication and Treatment Decisions – Navigating Online (mis)Information & Evaluating the Evidence".

Summarizing Cort Johnson's summary:

What it starts on is easy: Go for stuff that's cheap with good evidence to help.

But then it gets really specific and qualified about certain newer treatments, YES first (#1-#3), then Perhaps (4-7), then NO (8-10):

• L D N - YES, cheap, lots of trials going on for FM, ME/CFS and Long-Covid (plus a new study has shown that naltrexone is stable in liquid which means it's OK after all to titrate it after dissolving it, if you can get naltrexone prescribed).
• aripiprazole/Abilify for ME/CFS -YES: fog & fatigue & PEM, cheap, little risk.
• Amygdala Retraining Program – (Gupta) YES, neuromodulation, low cost.
• Metformin - a new one for us, YES if you get CoV, but unsure if more.
• Guanfacine (typically for ADHD) - YES for fog & tension if you can afford it.
• Micronized PEA (palmitoylethanomide) – YES, but not cheap.
• Repetitive transcranial magnetic stimulation (rTMS) – Perhaps.
• Oxaloacetate – NO, safe and possibly effective, but very expensive.
• CT38 - not yet.
• Rituximab for ME/CFS has very probably failed - NO.

There's also a (dropbox) link to details and his assessment of 40 substances incl. the above, amitriptyline, (duloxetine/)Cymbalta, gabapentin, (pregabalin/)Lyrica...

Ric Arseneau is an ME/CFS/FM/Long-CoV/ chronic disease expert, was a complex chronic disease clinic director and much more.

 

[Auriel]

Ooh interesting (im gonna have a little look-see at that soon)

 

[JayCS]

Ooh interesting (im gonna have a little look-see at that soon)

Yeah, I've had a look into a few of the dropbox files, they're great. Regularly warnings about things like "false energy", up to now I thought I was the only one getting that.

Once you've clicked on one file you can browse using forward and backward arrows amongst pdfs, but that doesn't work properly for docx.

 

[PANOWLCHAP]

AFTER WRITING THIS POST I REALIZED THAT A DISCUSSION WOULD HAVE BEEN MY FIRST CHOICE.
I KNOW THAT EVERY HUMAN ON THIS EARTH IS NOT A COOKIE CUTTER COPY. BETWEEN FIBRO FOG AND PAIN MEDICATION I DO WELL TO PUT A SENTENCE TOGETHER. 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. I AM 73, I HAVE FM & CFS SINCE THE 90'S. IT WAS TRIGGERED WHEN MY BODY WENT INTO EARLY MENOPAUSE. THERE WERE VERY FEW DRS WHO EVENED RECONGIZED FM MUCH LESS TREATED IT. THIS IS THE ERA I COME FROM, 33 OF PAIN, FIBRO FOG, AND ALL THE OTHER FUN THINGS THAT COME WITH IT. I HAVE DELT WITH DRS WHO DIDN'T OR DID BELIVE. BEEN ON MANY MEDICATIONS THAT I COULD NOT TOLLERATE EVEN THOUGH IT STOPPED THE PAIN. MY MUSCLES KNOT WORSE IN MY BACK. ONE FRIEND WHO WAS HELPPING ME SAID IT FELT LIKE CONCREAT. I HAD A DR 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.