Different Perspectives on Fibro

[JayCS]

Interesting about the cortisol imbalance and you correcting it. How you do that?

Ooh, that's intricate, so long, but your thread, your question... and for me it's helpful to recollect my development, so I hope you don't mind the details of the whole story...

Well, after about the first 10 sessions I realized something was doing a bit of good, but a lot was backfiring. I was getting some energy, but this was causing more insomnia and using it caused overdoing-flares.
So I sorted out that I'd need to be able to cold shower in the evening before sleep, which I need to calm mainly my back unrest and brain to be able to sleep.
It was my acupressurist, not acupuncturist, that had said not to cold shower after the acupressure as it neutralizes it. So when I tried a Western acupuncture it hurt so much during and after that I decided to neutralize it with a cold shower and that worked, stopped all effects. So I thought it was necessary not to cold shower, which meant considerably more insomnia. Then I discussed that with the Chinese acupuncturist and she said to try it, and it turned out it didn't neutralize it, that was a breakthrough.
Next I realized the additional cortisol alone was disturbing sleep too. Researching, I realized more cortisol reduces serotonin, which I need more of, so I had to start rebalancing that by increasing my GABA. (It was also useful to know that histamine also reduces serotonin, so another increase in GABA. Both is 100% confirmed by it also keeping bladder pain and seizures in check.)
And the 3rd main problem was that I felt as if I had more energy, but using it (as I was used to do) always backfired, so I had to learn to use none or only a small part of it, which was hard self-discipline (but a good preparation for my condition now after the 3rd jab, having had to learn to generally slow down even more, as I no longer have any short straw fire energy bursts that I had with fibro alone).
A 4th factor I identified as trigger "events", where something like a short trip or performing music a iittle could render the acupuncture almost ineffective, often for many weeks. That's trained me to make sure I calculate the risks better, meaning even more reduction.
To target the session - energy - sleep - events connection I made a chart for my first 25 sessions, attached: light blue are the sessions, brown the sleep, red the energy and black (of course ) the trigger events. That way I could identify these connections pretty clearly. I'd begun standardizing the amount of energy and sleep anyway, using % of pre-fibro, to explain to colleagues and friends more precisely what my state and perspectives are. As opposed to the normal perspective I for myself prefer measuring the positive, so energy and sleep, rather than fatigue and insomnia, and I've found it useful to use the % for every single symptom (which I then can easily keep track of on my daily blog).
After the 3rd CoV-jab I stopped the acupuncture, because both sleep and energy suddenly became more stable and I didn't want to throw that off balance: my sleep is now stably almost as good as pre-fibro, for the first time (due to improved supps before, and then the jab plus an antihistamine), whilst despite that my energy is even less, but with less deflections down as well as up (5-25% before, 15-20% after) and I can now push thru longer if I do everything slowly, which is more effective. Then trying the Chinese acupuncture again after ~7 weeks it did nothing except a little more sleep problems for a few days...
Hope you don't regret going thru all this detail... ¯\_(ツ)_/¯

 

[Auriel]

Aah, haha, thank you fibro849

 

[JayCS]

Cupping, tongue and pulses ? Does she put her tongue on you jaycs?

Hahaa! Not if I can help it!

I think he means inspecting the tongue.

Yep. I stick my tongue out at them for a while, unmasking for a moment, and they study it, my practitioner photographed it from the side and front.

Not sure now if you know that cupping doesn't mean a cuppa tea and pulses here aren't legumes ...
If you don't know, I'd relish you having a stab at it....

 

[fibro849]

Ooh, that's intricate, so long, but your thread, your question... and for me it's helpful to recollect my development, so I hope you don't mind the details of the whole story...

Well, after about the first 10 sessions I realized something was doing a bit of good, but a lot was backfiring. I was getting some energy, but this was causing more insomnia and using it caused overdoing - flares.
So I sorted out that I'd need to be able to cold shower in the evening before sleep, which I need to calm mainly my back unrest and brain to be able to sleep.
It was my acupressurist, not acupuncturist, that had said not to cold shower after the acupressure as it neutralizes it. So when I tried a Western acupuncture it hurt so much during and after that I decided to neutralize it with a cold shower and that worked, stopped all effects. So I thought it was necessary not to cold shower, which meant considerable more insomnia. Then I discussed that with the Chinese acupuncturist and she said to try it, and it turned out it didn't neutralize it, that was a breakthrough.
Next I realized the additional cortisol alone was disturbing sleep too. Researching, I realized more cortisol reduces serotonin, which I need more of, so I had to start rebalancing that by increasing my GABA. (It was also useful to know that histamine also reduces serotonin, so another increase in GABA. Both is 100% confirmed by it also keeping bladder pain and seizures in check.)
And the 3rd main problem was that I felt as if I had more energy, but using it (as I was used to do) always backfired, so I had to learn to use none or only a small part of it, which was hard self-discipline (but a good preparation for my condition now after the 3rd jab, having had to learn to generally slow down even more, as I no longer have any short straw fire energy bursts that I had with fibro alone).
A 4th factor I identified as trigger "events", where something like a short trip or performing music a iittle could render the acupuncture almost ineffective, often for many weeks. That's trained me to make sure I calculate the risks better, meaning even more reduction.
To target the session - energy - sleep - events connection I made a chart for my first 25 sessions, attached: light blue are the sessions, brown the sleep, red the energy and black (of course ) the trigger events. That way I could identify these connections pretty clearly. I'd begun standardizing the amount of energy and sleep anyway, using % of pre-fibro, to explain to colleagues and friends more precisely what my state and perspectives are. As opposed to the normal perspective I for myself prefer measuring the positive, so energy and sleep, rather than fatigue and insomnia, and I've found it useful to use the % for every single symptom (which I then can easily keep track of on my daily blog).
After the 3rd CoV-jab I stopped the acupuncture, because both sleep and energy suddenly became more stable and I didn't want to throw that off balance: my sleep is now stably almost as good as pre-fibro, for the first time (due to improved supps before, and then the jab plus an antihistamine), whilst despite that my energy is even less, but with less deflections down as well as up (5-25% before, 15-20% after) and I can now push thru longer if I do everything slowly, which is more effective. Then trying the Chinese acupuncture again after ~7 weeks it did nothing except a little more sleep problems for a few days...
Hope you don't regret going thru all this detail... ¯\_(ツ)_/¯

Interesting, thank you.

 

[fibro849]

Interesting, thank you.

For me on first glance these reactions would have something to do with excess nitric oxide causing too much inflammation. Honestly I hardly use acu at first with my patients (depending on which type) for this reason. I might do very light needling to rebalance the inflammation and nitric oxide, but otherwise it can be too painful for fibro patients. (Just FYI, everyone's different, to each their own)

 

[JayCS]

these reactions would have something to do with excess nitric oxide causing too much inflammation.

Can't see that connection, as opposed to the cortisol one, which is medically proven, and explains it perfectly for me. So could you explain why you disagree?
(I am sort of aware of the nitric oxide hypothesis, but have never been able to relate to it.)

Honestly I hardly use acu at first with my patients (depending on which type) for this reason. I might do very light needling to rebalance the inflammation and nitric oxide, but otherwise it can be too painful for fibro patients. (Just FYI, everyone's different, to each their own)

Well the thinner needles hurt me a lot, the thick ones hardly hurt me....
Acupuncture is one of the treatments with more medical evidence to help with fibro, and up to now only one other fibromite has shared that they found acupuncture was painful, so I'm a bit surprised at your experience - how many of your patients actually found it painful then?

 

[Auriel]

Yes Jay (cheeky boy) I did work out what cupping and pulses meant (though with pulses i did have 2 choices in my mind)

 

[fibro849]

Can't see that connection, as opposed to the cortisol one, which is medically proven, and explains it perfectly for me. So could you explain why you disagree?
(I am sort of aware of the nitric oxide hypothesis, but have never been able to relate to it.)

Well the thinner needles hurt me a lot, the thick ones hardly hurt me....
Acupuncture is one of the treatments with more medical evidence to help with fibro, and up to now only one other fibromite has shared that they found acupuncture was painful, so I'm a bit surprised at your experience - how many of your patients actually found it painful then?

Oh no by no means am I saying that. Acu is great for fibro, that's why I studied it!

Hmm interesting, in both northern hemisphere and southern I found this to be the case.. without looking through clinical notes I'd say somewhere around 50% (although again I was treating mostly specific types)

I don't disagree, nitric oxide is very documented scholarly, in fact it NO is intricately linked to cortisol. (Even a quick google should show links)

 

[JayCS]

somewhere around 50% (although again I was treating mostly specific types)

From anecdotal experiences on the fibro forums I'd guess in 1 of 100 it caused fibromites pain, plus me....

documented scholarly, in fact it NO is intricately linked to cortisol. (Even a quick go ogle should show links)

FYI: writing go.ogle / boogle without corrupting it puts a post in a moderator queue. (I don't use g. anyway.)
Even leaving your quote in -> "This message is awaiting moderator approval, and is invisible to normal visitors."
(If that happens a workaround is to "edit", copy it into a new post, bungle it up and delete the previous one.)

Hmm, a quick search confirms what I'd gathered that it is often too high in us, which reduces serotonin and dopamine, but also tells me that along with "oxidative stress" it reduces cortisol. Showing that "intricate" is fitting, but not explaining my increased cortisol due to acupuncture, something also well documented....?

Taking "all" supplements recommended for oxidative stress has little to no effect on this for me, so doesn't seem like a pointer to something new at the moment...?
(20 antioxidants in maximum dose, high dose vitamins (adding E again soon), sufficient minerals (adding manganese soon), only organic foods & creams, not the least tabaco.)

 

[fibro849]

From anecdotal experiences on the fibro forums I'd guess in 1 of 100 it caused fibromites pain, plus me....

FYI: writing go.ogle / boogle without corrupting it puts a post in a moderator queue. (I don't use g. anyway.)
Even leaving your quote in -> "This message is awaiting moderator approval, and is invisible to normal visitors."
(If that happens a workaround is to "edit", copy it into a new post, bungle it up and delete the previous one.)

Hmm, a quick search confirms what I'd gathered that it is often too high in us, which reduces serotonin and dopamine, but also tells me that along with "oxidative stress" it reduces cortisol. Showing that "intricate" is fitting, but not explaining my increased cortisol due to acupuncture, something also well documented....?

Taking "all" supplements recommended for oxidative stress has little to no effect on this for me, so doesn't seem like a pointer to something new at the moment...?
(20 antioxidants in maximum dose, high dose vitamins (adding E again soon), sufficient minerals (adding manganese soon), only organic foods & creams, not the least tabaco.)

Ah cheers, I thought what I was saying was too controversial or something..

Yes, too little or too much nitric oxide will cause cortisol levels to either drop or rise. One of the reasons why I use reducing techniques (light needling) in the beginning to lower nitric oxide.


Not necessarily, not just for fibro, but for everyone, there is usually a combo of excess NO in one part of the body and a deficiency of NO in another. This is where the science of TCM diagnosis and treatment becomes an artform and most effective.

 

[JayCS]

Yes, too little or too much nitric oxide will cause cortisol levels to either drop or rise. One of the reasons why I use reducing techniques (light needling) in the beginning to lower nitric oxide.

That'd have to do with it functioning as a neurotransmitter, I guess. Reading on and dabbling with amino acids in relation to neurotransmitters has also shown me it's about balancing them out.
I just realized I've been misunderstanding light needling as praps thinner needles, for a shorter time, so I searched and found that it actually means using light: fine optical fibers using highly excited photons, so not puncturing like acupuncture or dry needling does. "Needling" seems strange in that context, but still...

Not necessarily, not just for fibro, but for everyone, there is usually a combo of excess NO in one part of the body and a deficiency of NO in another. This is where the science of TCM diagnosis and treatment becomes an artform and most effective.

Love both "concepts":

Like balancing all substances and treatments and was it @JamieMarc saying life in general an imbalance will of course be in itself often imbalanced in its distribution... something hard for our brains to cope with, hard to measure, so lots of conjecture, and where more individualized types of medicine will be the future... and traditional medicine can continue to inspire modern medicine more than it (already) does.
(A comparison with the difficulties of weather and its forecast due to continual movement and thus changing distributions just came to my mind....)

And an art form is definitely how I regard manoeuvring my body reactions to triggers (incl. treatments). Also a vibe in @sunkacola's attitude (and mine) of relishing each morsel of knowledge....

 

[JayCS]

fine optical fibers using highly excited photons, so not puncturing like acupuncture or dry needling does.

Just read on a bit, cos I was wondering if that wouldn't be lasering, and yes, low laser therapy, also called LLLT (low level laser (light) therapy), which I've often heard about. My acupressurist used green light, can't remember if that's LLLT too, I think it was only LED. Both having a small evidence to help some fibromites...

an imbalance will of course be in itself often imbalanced in its distribution

...making it appear logical that alternative medicine tries to get these moving into "flow" to re-balance...

 

[fibro849]

Just read on a bit, cos I was wondering if that wouldn't be lasering, and yes, low laser therapy, also called LLLT (low level laser (light) therapy), which I've often heard about. My acupressurist used green light, can't remember if that's LLLT too, I think it was only LED. Both having a small evidence to help some fibromites...

...making it appear logical that alternative medicine tries to get these moving into "flow" to re-balance...

Something like this as a small part yes

 

[sunkacola]

Well actually, there is a pretty trustworthy source of Chinese medicine being tested in "Western" style clinical trials.
From a seemingly surprising, but obvious and logical overlap!:
Very often when I look on pubmed for herbs and other TCM treatments, I find peer reviewed clinical trials done by Chinese researchers. I see them as just as trustworthy, because they are just as self-critical and tentative with their wording. The often hopeful note recommending further more exact trials is there, but that's the case in all clinical trials & reviews that have vaguely positive results.

That is cool to know. that was my question - are there any trials being done. I was not assuming that there were not any.

I completely share this attitude, but it needs our radical acceptance, making the best of our situation and always keeping our spirits up to do so. If anyone feels slighted by not feeling able to, I think it's probably best to try to grasp at least a tiny bit of this attitude as an ideal, where each bit is better than nothing. So as an encouragement for self-advocacy, working on ourselves and celebrating each time we find something that helps, motivating to find more

Of course, I agree with this.
Anyone frustrated by not understanding needs to remember that it is literally impossible to know everything about anything, and that the not knowing provides a good opportunity for enjoying the Great Mystery.
Radical acceptance is one of the major ingredients in managing fibromyalgia (or any other chronic or permanent condition).

 

[sunkacola]

A note about moderation queues: if your post goes into that queue, it will appear within 24 hours, because I or the other moderator will see it and approve it. But if you want it to appear right away, then yes boggle the word that will get you into that queue.

@fibro849 , interesting information you have, and I am glad to hear it. Please remember that posting a direct link is not permitted, but you can always tell us what words to put into a search engine to find it.
(Not saying this because y ou have posted a link, but because you said you could link to the studies....so making sure. ) Best to do that rather than sending an actual link as a PM to another member also. One - then anyone can look it up. 2- everyone should be wary of direct links on the internet just as a matter of common sense.