Fibromyalgia and the trail of glutamate sensitivity

[Phil62]

Hello, I am a 56 year old French man and I have suffered from fibromyalgia for several years now. I don't take any medication.
Significantly reducing or completely eliminating from my diet foods naturally rich in free glutamic acid as well as processed foods containing MSG has greatly reduced all of my physical and psychological symptoms related to fibromyalgia. It is an extremely positive experience for me and I want to share it with you.
Oops, gluten is also part of my diet. It actually contains 30-35% glutamic acid on its own! No wonder many people feel better after eliminating gluten from their diet! Excuse me for my translation errors

 

[JayCS]

Hi Phil, and welcome!

Oops, gluten is also part of my diet.

You mean: "avoiding gluten" I think?
I can imagine MSG being a major problem for some as well as gluten for some.
But reducing all glutamic acid would mean avoiding all protein high foods, like meat, poultry, fish, eggs, and dairy products, does that mean you eat vegan and gluten free?
Also it has to do with the neurotransmitter glutamate, which has to do with the neurotransmitters L-glutamine and GABA, both of which I need to supplement. And I actually at first supplemented glutamic acid, because a German company marketed glutamic acid as "glutamine (Verla)" supplement, until I found out this wasn't what I meant and was recommended to take. This shows there might be some confusion of terms.

So perhaps you don't actually mean glutamic acid??

 

[Phil62]

Hello JayCS and thank you for wanting to dialogue with me on the subject.
Yes of course, I mean "absolutely avoid gluten which, when processed, contains 30-35% free glutamate" and excuse me for my mistranslation.
For my part, I think that my symptoms which I consider as neuromuscular hyper excitability and which we call today Fibromyalgia come from an increased sensitivity of my NMDA glutamate receptors and that this increased sensitivity is no longer correctly inhibited by my GABA receptors.
This means high protein foods therefore high in glutamic acid give me a major problem like MSG but only when those same foods have released glutamic acid from other proteins by being ripened, stewed, smoked , roasted or processed.
For example, eating a piece of unprocessed cheese such as Emmental, a salad of raw tomatoes that are not too ripe, a rare beef steak or even a chicken cutlet will not cause me symptoms, whereas eating a piece of melted Emmental, a cooked tomato, stewed beef or even roast chicken will explode my muscle tension, my nerve pain and so my anxiety like MSG and gluten can do!
Again, high protein foods don't bother me as long as the glutamic acid stays bound to other proteins.
It took me years of trial and error to understand this phenomenon which affects me personally.

 

[JayCS]

excuse me for my mistranslation.

Hehe, from German-English I know similar cases: What you wrote wasn't exactly wrong, just open to (mis-)interpretation. Like when English people say "I take that for pain" a German would ask back: "Why do you want more pain?"

my symptoms which I consider as neuromuscular hyper excitability and which we call today Fibromyalgia

Interesting interpretation and is obviously dead right for you, like GABA for me.
I could also see this as part of my condition, but what you experience doesn't help me, so I have to increase my GABA supplementation for the same reason. Interestingly GABA is the one thing that helps me most, immediately and in many areas, so it'd interest me if it helps you in other symptom areas aside of muscles, nerves and anxiety - which are a lot already: What about other fibro symptoms like insomnia, fog or actual direct food intolerances/IBS?

 

[Phil62]

Hi Jay, of course indeed! From French to German to English, it is true that the translation can get complicated sometimes!
I have never taken a GABA supplement because I had read several articles stating that GABA cannot cross the blood-brain barrier and there was no way for me to waste time and money on this extra charge.
That said, I see in your post that Gaba has worked for you for a lot of fibro-related problems. So I'm going to try it because I remain open to all solutions that could improve my health! How much GABA do you take? Do you take it every day? Do you possibly have any side effects with GABA?
I believe you and I are suffering from a glutamate/gaba balance imbalance diagnosed today as Fibromyalgia. Too much glutamate for me will cause me to be hyper excitable and therefore a flare up of symptoms and not enough gaba for you will also end up being hyper excitable and therefore a flare up of symptoms of all kinds!
Whether it's a glutamate sensitivity issue or a gaba deficiency issue, I think you and I need to find the best solutions to rebalance the glutamate/gaba balance to decrease hyper excitability as much as possible! Again, I will give GABA supplementation a try and thank you for enlightening me on this supplement through your positive experience.
I told you in my last post about my symptoms of muscle tension, nerve pain and anxiety because those are the symptoms that ruin my life the most! I obviously experience other symptoms of fibromyalgia such as brain fog, insomnia, vertigo, hyperalgesia, allodynia, irritable bowel and many more like peripheral neuropathy but these are greatly or totally alleviated by totally eliminating "Free" MSG and gluten from my diet and I don't think I have any other food intolerances.
If you wish, I will tell you in another post about my experiences with Lyrica (potential glutamate and substance P blocker) and Alprazolam (GABA receptors agonist).

 

[JayCS]

I have never taken a GABA supplement because I had read several articles stating that GABA cannot cross the blood-brain barrier and there was no way for me to waste time and money on this extra charge.
That said, I see in your post that Gaba has worked for you for a lot of fibro-related problems. So I'm going to try it because I remain open to all solutions that could improve my health! How much GABA do you take? Do you take it every day? Do you possibly have any side effects with GABA?

Hi Phil, I also saw those articles, albeit after having my very positive experience. Also more recent studies coming to the opinion that it apparently can, just not clear how that can be, as the molecules are too big. That's also the opinion of my sleep lab psychiatrist, who when I asked if praps GABA is working via my gut, said my effects are clearly a physiological brain effect and it's also not possible for it to me placebo if it is working for me that well long-term. Then people, esp. Datis Kharrazian, saying if GABA crosses it, then we have a leaky brain, similar to the leaky gut hypothesis. Neither fit to my body however, they don't work for me. In the interesting discussion between Trudy Scott as proponent of GABA and Datis Kharrazian on her anxiety blog, she is the clear winner to me and he backs down.

How much GABA do you take? Do you take it every day? Do you possibly have any side effects with GABA?

GABA is more individual than other substances.
As I need a lot, 2-3g per day in 4-6 doses, it was no problem for me to start with 750mg.
But to others I first recommend to make sure if it is really that amino acid that is needed by looking at the symptom checklist that Trudy Scott calls "amino acid questionnaire".
Next to do as she suggests: start with 125mg sublingually and increase from there (start low, go low).
(If someone's esophagus & stomach doesn't tolerate even mild acids then to encapsulate like me however.)
Personally, I adjust the levels according especially to my bladder muscles, tension and seizures. At the moment 4x0.3g spread thru the evenings and night, 1x0.6g each in morning and at "mid"day.
I need to take it every day. When my histamine load also increases I have to increase to around 3g.
And I think taking it every day is what Trudy Scott would also normally recommend.
Andrew Huberman, who uses it just for sleep, takes it every 2 or 3 days in the evenings. That I think is something to test yourself, if you have the feeling your body needs regular impulses incited rather than a continual level like me.
I had a few minor side effects like vivid dreams in the first week. Overdosing causes a slight serotonin syndrome, which is quick to detect, so not scary, but that shows it's best to start low and go slow as said. The symptoms of too much serotonin are similar to too little, so it's not easy to know which it is. I'm getting better at sensing which it is rather than just testing.
A few people off- and online have tried it for fibro and for CFS after hearing my experience, but some needed something different of course.

 

[Phil62]

Hi Jay and thank you very much for your detailed information on GABA!
I have just ordered some online and I will start supplementation slowly and at very low doses after the New Year holidays.
I will be able to see how my body reacts to this supplement and I will naturally inform you of the evolution. Thanks again !

 

[Phil62]

Hi Jay, you say you need to take a bit more GABA when your histamine level is high. Why ? Are you having a high histamine level causing you a rebound in symptoms or new symptoms? Do you think that for some people a high histamine load can cause neuromuscular hyper excitability or some kind of neuroinflammation like glutamate can and a Gaba supplement potentially helps inhibit that excitatory load?
Interestingly, I just read a study specifying that highly histamine-loaded rats exhibit much higher glutamatergic neurotransmission and, conversely, much lower gabaergic neurotransmission. Similarly, my neurologist recently told me that excess histamine could cause some people to develop peripheral neuropathy or even small C-fiber neuropathy.

 

[JayCS]

Hi Phil - the histamine actually causes new (or changed) symptoms for me, like burning skin, tongue, mouth, sinuses and more, 25 in total. This is triggered as part of the mast cell condition MCAS from each of the 3 CoV-shots, esp. the first two. An antihistamine and many MCAS supps help. But after reading in several studies that histamine decreases serotonin, I tried increasing GABA and that immediately reduced all these forms of burning, esp. sinuses. I did also then find 1 or 2 studies saying that serotonin decreases histamine, like I was experiencing.
I can't say I've experienced (or read?) histamine create the nerve problems your neurologist mentioned. However in the first few weeks after the first 2 shots I had thermal(?) allodynia: showering became very painful. This got better when I stopped with NAC after coming across studies saying it can increase histamine in some people, altho it is generally considered as helpful for MCAS. Also I'm not sure if the burning or some of it might be considered nerve related rather than just immune system / allergy related, like I've been lead to believe, or both. I'm also not sure about high histamine causing neuromuscular hyper excitability or neuroinflammation. Neuroinflammation might be part of the burning. Neuromuscular hyper excitability would praps fit best to 2-4 hours on occasional days after the first two jabs where I felt sort of normal, or even "charged up", something I've hardly ever had since the onset of my fibro full flare 3 years ago. But fibro brought my energy levels from >100% down to max. 35%, and each jab has taken them down even further. I'd find it hard to see that quick exhaustibility as a consequence of neuromuscular hyper excitability. But I can imagine my muscular tension being increased from the jabs and is alleviated by the GABA.

I do prefer considering all possibilities if they help me come up with new ideas what to try, but I'm fine with just a "definite maybe" and then being my guinea pig.

 

[Phil62]

Hi Jay - Your post is very interesting and thank you very much for your time!
In fact, your experience with histamine is very similar to my experience with glutamate. However and unlike you, the excess of glutamate will cause me, not a temporary thermal allodynia, but a temporary mechanical allodynia. Overloaded with glutamate, the slightest pinch of my normally painless skin becomes extremely painful for me. That said, whether thermal or mechanical, allodynia falls under the category of small sensory fiber neuropathies that can cause burning sensations identical to the one you feel with histamine. Troubling isn't it?
For my part, I consider that a large part of people with fibromyalgia can become intolerant or hypersensitive to many excitatory or pro-inflammatory substances (caffeine, gluten, histamine, glutamic acid, nicotine, MSG, aspartame etc...). Indeed, all or part of these substances can cause the increase of many extremely painful and above all confusing psychic and physical disorders!
It is obvious that gabaergic drugs (benzos, barbiturates, pregabalin, etc.) can in some cases improve certain symptoms. However, taking Alprazolam and Lyrica in low doses and for a very short duration caused my symptoms to explode upon discontinuation. I will therefore stay away from them by the fact that a long-term treatment of these drugs is not an option for me. I will therefore soon and gladly try a GABA supplementation which seems to me much softer and more suitable.

 

[JayCS]

Troubling isn't it?

At least it's only temporary! My wife was greatly worried when I was howling (not hollering), almost crying in the shower, but for me it was another challenge which I mastered.

For my part, I consider that a large part of people with fibromyalgia can become intolerant or hypersensitive to many excitatory or pro-inflammatory substances (caffeine, gluten, histamine, glutamic acid, nicotine, MSG, aspartame etc...). Indeed, all or part of these substances can cause the increase of many extremely painful and above all confusing psychic and physical disorders!
It is obvious that gabaergic drugs (benzos, barbiturates, pregabalin, etc.) can in some cases improve certain symptoms.

You putting it that way I have to recur that MCAS experts see fibro as a part or aspect of MCAS. After my experiences and reading I now strongly recommend everyone with fibro plus intolerances in several different organ systems to check out MCAS to see if there's anything for that condition that helps understand, prevent, alleviate these intolerances. E.g. mould/dust, scents etc. are further big ones aside from all the ones you've listed...

 

[Phil62]

Yes, indeed you are right and I understand you. However, regardless of the trigger (histamine or otherwise), I am quite troubled by the fact that many experts agree that a flare-up of MCAS will in turn trigger an increased release of glutamate in the brain which , in turn, will ultimately trigger hypersensitivity and/or hyperexcitability of the central, peripheral or even autonomic nervous system. All of which can of course cause a multitude of symptoms and I am therefore not surprised that a high supplementation of GABA can reduce the intensity of your symptoms caused by one or other of the triggers such as histamine. By allowing the opening of the chloride channels, GABA has the essential function of regulating/inhibiting the ionic excess of the excitatory calcium/sodium channels caused mainly by the receptors sensitized to glutamate. Happy New Year to you!

 

[JayCS]

Happy New Year, Phil!

 

[CancerSignFibro]

I have noticed if I eat MSG, I feel worse, same for most preservatives, especially calcium propionate.
Pork and chicken seem to make this worse too which makes me wonder if glutamate is a major culprit. I am so allergic to things
that I wonder if alot of this pain is an allergy to foods, MSG etc? Interesting take and for the record, Lyrica made me way worse. Curious your response?

 

[JayCS]

Reading of MSG as a trigger from others elsewhere too.
I must say MSG may always be a trigger, quite aside of conditions.

same for most preservatives, especially calcium propionate.
Pork and chicken seem to make this worse too which makes me wonder if glutamate is a major culprit. I am so allergic to things
that I wonder if alot of this pain is an allergy to foods, MSG etc?

In these cases, I generally point people to MCAS, esp. if they are intolerances, rather than detectable allergies. I have to eat extremely clean, only 50 foods, never anything processed, and it improves my GI pains greatly, whilst reducing histamine reduces my MCAS burning (sinuses, tongue, mouth, skin). But in MCAS there is a large variety of triggers and intolerance reactions (right up to anaphylactic shock, even from things like excipients).