What do you think about the belief th... - Fibromyalgia Acti...

Fibromyalgia Action UK

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What do you think about the belief that many have that fibro is to do with lack of serotonin and or cortisol levels?

wiserlady profile image
16 Replies

Thank you.

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wiserlady profile image
wiserlady
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16 Replies
KBM0g3r profile image
KBM0g3r

It is now known from several studies that Fibromyalgia is associated with peripheral nerve damage. (Source: report of various studies on this website). It is also well known that too much cortisol for too long a period can cause nerve damage. As Fibromyalgia sufferers frequently report that their condition starts after prolonged stressful periods and prolonged stress raises cortisol levels, then yes, I think there is a direct correlation between Fibromyalgia and cortisol levels.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toKBM0g3r

if you mean the SFN research they are not sure if it is causative and I think the overlap is about 20-30% but there is more work happening in this area and hopefully the likes of Uazman Alam with a potential passive eye test may help clarify the overlap better.

The aetiology of fibro is complex and nothing is definitive as yet with studies only being indicative of areas of further research :(

wiserlady profile image
wiserlady in reply toKBM0g3r

Mine started after a lot of steroid/asthma inhaler use.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee

it depends what we mean by "fibro is to do with" as I would say that serotonin and cortisol or stress play a part of how our fibro does or can behave. Do we have sub groups within our community is important as well as this could explain the deviation it treatments and theories.

Serotonin is a target of quite a few medications for fibro and as a transmitter it makes sense. Stress is implicated in cause but not clear how much it plays a role but this is different than cortisol being causative.

Its all very complicated hence why research continues to peck away at so many areas.

wiserlady profile image
wiserlady in reply todesquinn

Thank you. Cortisol and/or serotonin - which are opposites of each other just as black is to white. Are why I have it.

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply towiserlady

not sure if they are as related as that but certainly their effect within chronic depression etc has been cited. They appear to be more players or antagonists within fibro rather than causative. But more research will pin that down.

wiserlady profile image
wiserlady in reply todesquinn

Interesting. To me they are definitely related. A few years ago when I first started to be ill the doctors could not figure it out and kept fobbing me off. Then I started to take 5htp and within 24 hours felt masses better. The trouble was that a few days later it seemed to not be working anymore, as if I was not taking it. And a lot of research told me that when cortisol is up serotonin is down etc. 5htp is tricky because you have to take it cautiously for a while and then stop for a while and then start again etc, other ways are easier. Of course if you need more cortisol you are stumped you need steroids. I got so sick and tired of my doctor not understanding this I got my own.

JayCeon profile image
JayCeon

Interesting, I hadn't seen the connection mentioned before. Looking up studies, they are all older ones, so I guess it's not that helpful. Still for my body I wouldn't deny that I have too much cortisol, as I enjoy a lot of energy, even with FM, and may explain a bit why I have too low serotonin....:

The supp GABA = gamma-aminobutyric acid has been helping me more than anything else has in 10 areas, since April (so my docs say it definitely can't be placebo). This increases serotonin. (Some say it can't cross the blood-brain-barrier, but that's being disproved more and more and my docs say I am proof.) But taking too much more without a dopamine 'antagonist' (glutamate & theanine work well for me) causes an overdose, serotonin syndrome. Had that 2-3 times. It's a case of balancing serotonin and dopamine. All the amino acids (e.g. also taurine & tyrosine) are interrelated, they need to be balanced out. If you're interested in this, then you might want to have a look at Trudy Scott's amino acid questionnaire - your symptoms may indicate which amino acid(s) you need. I'm taking a lot of supps for various reasons now, after initial skepticism due to the normal vitamins & minerals not working at all, but GABA works for me very clearly, as well as for a colleague of mine, whilst my acupressurist needed tyrosine instead (carb cravings). Trudy starts her patients with 125mg sublingually, increasing. I need to encapsulate and use 2g, spread over the day and night, balanced out with 1.1g of glutamate, spread, plus .5g of theanine in the mornings.

A cyclical dosage like you say about 5-HTP is or may be necessary for some other supps too, like mumijo (cdn't see an effect of that tho) or one that is sometimes a real booster for me, NADH, also selenium (maybe) shouldn't be taken >6 months. I strongly overreact to 5-HTP & L-tryptophan, like to melatonin, they all zombify me.

wiserlady profile image
wiserlady in reply toJayCeon

very interesting. i dont need more amino acids, with me it's all about cortisol and serotonin. hope you feel better soon.

JayCeon profile image
JayCeon

Funny that .... O.o - how do you know? If you are talking serotonin, you are talking amino acids. And: I thought you were taking the amino acids tryptophan and/or 5-HTP... ?? (Serotonin is 5-HT, a monoamino neurotransmitter).

wiserlady profile image
wiserlady in reply toJayCeon

It's very simple. When I use my asthma inhalers - which contain "cortisol" I become more ill. When I have to take predisolone and it goes up and down the same thing happens. I was fine before using either of them. And it turns out I don't have asthma. This has happened to other people too.I had this problem for four years My doctor got it wrong, the other doctors and nurses there got it wrong, in the end when I eventually nagged and nagged and got to see a proper rheumatologist and told him what I believed he spoke to me and ended up agreeing that I am right.

JayCeon profile image
JayCeon in reply towiserlady

You misunderstood that: I wasn't in any way contending your explanation for your symptoms (yet). If too much cortisol means decreased serotonin (5-HT), amino acids can increase this neurotransmitter, which you have already been doing at least with 5-HTP.

But 2nd misunderstanding now: The steroid hormone used in asthma inhalers is cortisone. Not the stress steroid hormone cortisol maybe connected to serotonin.

wiserlady profile image
wiserlady in reply toJayCeon

Yes I know.

JayCeon profile image
JayCeon in reply towiserlady

Oooops, I have to backpaddle on the supposed difference between cortisol and inhaler-"cortisone". You are right, the stuff in asthma inhalers isn't really cortisone, it is hydrocortisone, which is much more potent artificial form of cortisol. And even real cortisone itself is only active in the body if converted to cortisol. Prednisone is a cortisone-derivative. Confusing, I still haven't quite got it.

Still intrigued by the idea that my amino acids are maybe improving my cortisol levels tho, altho it's logical as they are relaxing and cortisol hypes.

"The substances in asthma inhalers, which act like cortisol but are produced artificially, are called 'hydrocortisone'."

ecarf.org/en/cortisone-inha...

Similarly on wikipedia:

"Hydrocortisone is the name for the hormone cortisol when supplied as a medication." en.wikipedia.org/wiki/Hydro...

"The term "cortisone" is frequently misused to mean either any corticosteroid, or hydrocortisone, which is actually another name for cortisol. Many who speak of receiving a "cortisone shot" or taking "cortisone" are actually receiving hydrocortisone or one of many other, much more potent synthetic corticosteroids; it is unlikely that the drug administered is actually cortisone."

en.wikipedia.org/wiki/Corti...

Cortisone itself is inactive, it must be converted to cortisol by "cortisone reductase".

en.wikipedia.org/wiki/Corti...

Prednisone is a synthetic pregnane corticosteroid and derivative of cortisone.

en.wikipedia.org/wiki/Predn...

Badbessie profile image
Badbessie

To be honest due to her medications my wife as high levels of serotonin to the point were various experts are worried about serotonin syndrome. This as been a constant since long before a diagnosis of fibromyalgia. In my wife's case I do not think low levels of serotonin have been a factor but rather the damage done to nervous system by her underlying conditions.

JayCeon profile image
JayCeon in reply toBadbessie

When this happens (in my case increased seizures) I increase glutamine to balance it out again.

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