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Fibromyalgia Syndrome: A Case Report on Controlled Remission of Symptoms by a Dietary Strategy.

Gondwanaland

Senior Member
Messages
5,094
I wonder if eating fruit away from meals that contain protein would be ok... I tried this yesterday, had a fruit snack in the middle of the afternoon, and still slept very well. No pain during the night and very little pain today.
 
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Messages
52
Okay, sorry. my flare yesterday and posting from bed on my kindle made me a bit confused with my previous posts.

Trying again:

Okay. so the food list. It looks like it's an overlay of food that is 1) High in tryptophan. 2) No fructose (except almonds, I guess the tryptophan outweighs the small amount of fructose, in limited quantities). 3) No lactose. 4. No sorbitol. (And also cutting out fake sugars, but that's another thing). PLUS the (white) potatoes and rice, which have no tryptophan, but also no fructose - they seem to be there under the working theory that an insulin response is necessary for tryptophan to cross the BBB.

Oh, and I see coffee is in the list of allowed foods now. Missed that yesterday.

Looked up coconut oil, and that seems like it's 0 fructose/fructans. So that could be included in this diet it seems. With coconut water there's more fructans and sorbitol. Oh well, I don't drink much of it, and mostly for the potassium. Potassium, yeah, I started v-8 recently. Well, there's potassium in potato, so that would make up for it, I think.

Hmm... a diet of mostly meat and potato. That's not too strange. My MIL would still freak out that there's no bread allowed, though. I'm totally open to zero-carb/carnivore, but that's a bit more strange, and the stress of other people's response might be a bit much. Maybe I'll slowly slide into it, and see if anyone notices. :D

Oh, and just to throw another thing in, Promethease says I have, like, all the ABCB1 gene expressors that make me 7x less likely to respond to antidepressents. I'm not sure, with that, why amitriptyline helps me a little, and why I got serotonin sickness. But, again, I'm not sure if that is relevant to trying to up the natural intake and absorption of tryptophan. I'm just a little wary of serotonin right now. Serotonin sickness sucks.
 

Gondwanaland

Senior Member
Messages
5,094
I'm totally open to zero-carb/carnivore, but that's a bit more strange, and the stress of other people's response might be a bit much. Maybe I'll slowly slide into it, and see if anyone notices.
I have read some n=1 reports of the carnivore diet and I suspect it is more beneficial for men. One woman complained of losing her tolerance to chocolate. One might get stuck to meat only...
I'm not sure, with that, why amitriptyline helps me a little
I think it has some anti-allergic properties.
 
Messages
67
Okay, sorry. my flare yesterday and posting from bed on my kindle made me a bit confused with my previous posts.

Trying again:

Okay. so the food list. It looks like it's an overlay of food that is 1) High in tryptophan. 2) No fructose (except almonds, I guess the tryptophan outweighs the small amount of fructose, in limited quantities). 3) No lactose. 4. No sorbitol. (And also cutting out fake sugars, but that's another thing). PLUS the (white) potatoes and rice, which have no tryptophan, but also no fructose - they seem to be there under the working theory that an insulin response is necessary for tryptophan to cross the BBB.

Oh, and I see coffee is in the list of allowed foods now. Missed that yesterday.

Looked up coconut oil, and that seems like it's 0 fructose/fructans. So that could be included in this diet it seems. With coconut water there's more fructans and sorbitol. Oh well, I don't drink much of it, and mostly for the potassium. Potassium, yeah, I started v-8 recently. Well, there's potassium in potato, so that would make up for it, I think.

Hmm... a diet of mostly meat and potato. That's not too strange. My MIL would still freak out that there's no bread allowed, though. I'm totally open to zero-carb/carnivore, but that's a bit more strange, and the stress of other people's response might be a bit much. Maybe I'll slowly slide into it, and see if anyone notices. :D

Oh, and just to throw another thing in, Promethease says I have, like, all the ABCB1 gene expressors that make me 7x less likely to respond to antidepressents. I'm not sure, with that, why amitriptyline helps me a little, and why I got serotonin sickness. But, again, I'm not sure if that is relevant to trying to up the natural intake and absorption of tryptophan. I'm just a little wary of serotonin right now. Serotonin sickness sucks.

Interestingly, some serotonin-inducing medications (buspirone in particular) have caused strong negative reactions in ME, as opposed to FM. It was being touted as a possible diagnostic test for a while.

One of the theories at the time was that ME patients have too much serotonin, as opposed to FM patients, who may have too little. Other studies kinda dispute this (as with everything in this disease), but SSRIs also don't seem to work for many of us, so it's a distinct possibility.

Also, 80% of ME patients supposedly have pain, so it may be that you've got both ME and FM, or just ME with significant pain.

Amitriptyline at low doses for pain and sleep doesn't actually have much of an antidepressant effect. It also works on norepinephrine as well as serotonin, and seems to have anticholinergic and sodium channel effects, which may be why it's so useful in ME. The MEA recently published some info suggesting it also helps the autonomic nervous system. So it's likely not the effects on serotonin that make it useful (at least, it's not solely that).
 
Messages
52
I have read some n=1 reports of the carnivore diet and I suspect it is more beneficial for men. One woman complained of losing her tolerance to chocolate. One might get stuck to meat only...

I think it has some anti-allergic properties.

I really like meat. Though I also like chocolate... oh yeah, that's not meat. Lol.

Anti-allergic - interesting. You know, I've always been a fan of anti-allergy medicine. As a kid I would sneak swigs of Benedryl when it was in the medicine cabinet. It just made me feel better. Rational adult me gaze diapprovingly at little me, yet whenever I take a good antihistimine, like a COX-2 inhibitor (I think I meant H2, got a bit mixed up there), I get a little lift of the cotton ball feeling in my head. So I have to allow that maybe little me was onto something with her illicit practices.


Interestingly, some serotonin-inducing medications (buspirone in particular) have caused strong negative reactions in ME, as opposed to FM. It was being touted as a possible diagnostic test for a while.

One of the theories at the time was that ME patients have too much serotonin, as opposed to FM patients, who may have too little. Other studies kinda dispute this (as with everything in this disease), but SSRIs also don't seem to work for many of us, so it's a distinct possibility.

Also, 80% of ME patients supposedly have pain, so it may be that you've got both ME and FM, or just ME with significant pain.

Amitriptyline at low doses for pain and sleep doesn't actually have much of an antidepressant effect. It also works on norepinephrine as well as serotonin, and seems to have anticholinergic and sodium channel effects, which may be why it's so useful in ME. The MEA recently published some info suggesting it also helps the autonomic nervous system. So it's likely not the effects on serotonin that make it useful (at least, it's not solely that).

Yeah, too much serotonin. That's what I was thinking. But I have all this pain and muscle tension and tingling in my fingers and can't sleep well (without the amipytriptyline), so the usual answer to that is serotonin. But maybe that could be because serotonin seems like the latest biochemical wonder-baby fad.

I'm not sure if I have CFS. What I actually have is post-Lyme syndrome, but that's not considered a Real ThingTM.

Interesting info about amipitriptyline. Thanks for that. Helping the ANS sounds good. I tried going up to 50mg but it made me feel weird and I got a sand dry mouth overnight. So kept at 25, which is, yes, a very low dose. It also seemed to ease my PMS headaches. I put that in the past tense because I'm starting to suspect the benefits are wearing off. But that might be pregabalin's fault, after a few days of that I got a manic crash which gave me a days long headache, and headaches are popping up again with some frequency.

Meds suck.

That's one big reason why I'm interested in this. The lady in the study roughly matches me in age, BMI, education, and symptoms. That's not something I see everyday in FMS circles (just saying). And it largely matches how I want to eat anyways. I think my crash the last few days was because of both overexertion and gluten on Thursday. Bread is a national food here, so a bona fide (;)) medical excuse to say no to it is helpful.


Oh, and I'm also wondering if the fructose / tryptophan / serotonin link is really what is going on with this. The more I learn about human biochemical reactions and digestion the more I realize that it's really, really, really complicated. And neat explanations, which may seem logical and rational, are probably nonetheless false. Well known example: cholesterol. Lesser known examples: Lots, and probably many we haven't realized yet. But as a starting point I think I'll try following this pretty strictly, it worked for the other lady, maybe me too. But also tweak and investigate.
 
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ChrisD

Senior Member
Messages
475
Location
East Sussex
Oh, right. They also exclude lactose because.....it might be like fructose? Okay. Hmm....
so quitting fruit caused remission or your muscle pain et. al. Interesting. Did you trial cutting out all fructans?

Yes it was very noticeable from the point of quitting fruit to pain being relieved within a week, cutting out potato and rice after also compounded this and keeps me pain free :) I haven't tried cutting out all fructans, I am a bit addicted to dark chocolate - it is my only treat on a keto diet. But it is also noticeable that fodmaps, high histamine and Oxalates cause issues with my connective tissue and muscles still, not pain but strength and crepitus etc.
 
Messages
52
Yes it was very noticeable from the point of quitting fruit to pain being relieved within a week, cutting out potato and rice after also compounded this and keeps me pain free :) I haven't tried cutting out all fructans, I am a bit addicted to dark chocolate - it is my only treat on a keto diet. But it is also noticeable that fodmaps, high histamine and Oxalates cause issues with my connective tissue and muscles still, not pain but strength and crepitus etc.

Yeah, though I don't eat a lot of fruit. But this past week I had some. So maybe that also factored into my crash.

So you don't personally recommend a diet that includes potatoes, rice, and spinach? :cool:

I'm not sure about those things either. Or the insulin response required for tryptophan. I mean, I believe that it can certainly work like that, but I also suspect that the body may have another work around. I mean, not everyone does great on a ketogenic diet or ZC, but I don't see people on it suffering extreme depression in droves either.
 
Messages
67
I really like meat. Though I also like chocolate... oh yeah, that's not meat. Lol.

Anti-allergic - interesting. You know, I've always been a fan of anti-allergy medicine. As a kid I would sneak swigs of Benedryl when it was in the medicine cabinet. It just made me feel better. Rational adult me gaze diapprovingly at little me, yet whenever I take a good antihistimine, like a COX-2 inhibitor, I get a little lift of the cotton ball feeling in my head. So I have to allow that maybe little me was onto something with her illicit practices.

So this might be why the amitriptyline works too? I have this same benefit. I find ami works even better with an H1 and an H2 antihistamine before bed too (these also make your body metabolise it more slowly, so it could be that effect).

Yeah, too much serotonin. That's what I was thinking. But I have all this pain and muscle tension and tingling in my fingers and can't sleep well (without the amipytriptyline), so the usual answer to that is serotonin. But maybe that could be because serotonin seems like the latest biochemical wonder-baby fad.

It could be too much glutamate (which excites the brain). Gabapentin and pregabalin produce GABA which reduces glutamate.

It could also be peripheral neuropathy. In Merryn Croft's autopsy, they found dorsal root ganglionitis, which may cause peripheral neuropathy. Peripheral neuropathy usually affects the feet and hands.

Also, sleep might be disrupted because of ANS dysfunction, rather than low serotonin. It's actually melatonin and cortisol, plus other things, which govern your sleep/wake cycle. ANS dysfunction affects both. It's possible your serotonin levels are fine and you're just not converting it to melatonin (or it's being suppressed somehow).

I'm not sure if I have CFS. What I actually have is post-Lyme syndrome, but that's not considered a Real ThingTM.

Even if it is its own thing, like FM appears to be, it probably still has significant overlap. I'm not sure if it typically has high or low serotonin, though. It's always so hard generalising about these issues!

Interesting info about amipitriptyline. Thanks for that. Helping the ANS sounds good. I tried going up to 50mg but it made me feel weird and I got a sand dry mouth overnight. So kept at 25, which is, yes, a very low dose. It also seemed to ease my PMS headaches. I put that in the past tense because I'm starting to suspect the benefits are wearing off. But that might be pregabalin's fault, after a few days of that I got a manic crash which gave me a days long headache, and headaches are popping up again with some frequency.

No problem. Pregabalin may have ANS benefits too.

Meds suck.

They do. And yet, they're also invaluable. I feel your pain!

That's one big reason why I'm interested in this. The lady in the study roughly matches me in age, BMI, education, and symptoms. That's not something I see everyday in FMS circles (just saying). And it largely matches how I want to eat anyways. I think my crash the last few days was because of both overexertion and gluten on Thursday. Bread is a national food here, so a bona fide (;)) medical excuse to say no to it is helpful.


Oh, and I'm also wondering if the fructose / tryptophan / serotonin link is really what is going on with this. The more I learn about human biochemical reactions and digestion the more I realize that it's really, really, really complicated. And neat explanations, which may seem logical and rational, are probably nonetheless false. Well known example: cholesterol. Lesser known examples: Lots, and probably many we haven't realized yet. But as a starting point I think I'll try following this pretty strictly, it worked for the other lady, maybe me too. But also tweak and investigate.

Go for it! Keto certainly helped me!
 
Messages
52
Okay, now I'm feeling a bit better.

I wasn't feeling too well this whole past week. I thought at first that I was just still exhausted. But then I also wasn't sleeping well. Had a hard time falling asleep, then would wake up between 4 and 6 am completely dead tired but unable to get back to sleep (I usually sleep until 7 and feel at least mostly rested). I was also feeling increasingly apathetic and heavy-headed. I was also avoiding even my husband and kids more and more, just the bare minimum of communication.

Yesterday I had my usual two cups of BPC, with cocoa powder added. Then I had three sunny-up eggs with two slices of bacon (made with dextrose) and some spinach and a small amount of salsa. Then later I had a small handful of almonds and some dark chocolate. And then I started feeling really bad. I was feeling gross because I hadn't showered (so tired), so I thought maybe that's what I need. NOPE. Hot water was bad. Got dizzy and nauseous, then started shaking, and my arms and legs felt all tingly (more than normal) and my head felt really tight. Basically, how I felt when I took tramadol, but a bit less severe. But still awful. And my arthalgia was really acting up.

I took two asprins and asked my son to bring me some popcorn. And texted my husband to bring some bitter lemon tonic and cheap potato chips on his way home from work. After I downed both of those I started feeling better. I stayed in bed and skipped my evening amitryptiline, I got to sleep at about my usual time, and woke up just before 7 this morning. I still feel a bit sick in my stomach, and my joints are not quite back to their usual pain level, but I'm feeling a lot more energetic now.

Ray Peat has a recipe that instantly kills serotonin (made my husband instantly depressed): grated raw carrot with coconut oil.

Yeah, yeah, when I was in bed last night wondering "WTH?" I started reading Ray Peat forums and came across the carrot salad. I've read some of Peats stuff before, but couldn't figure out what he was on about. And I once got burned by a Stone-ian on an online forum who took offense at the fact that sugar makes me feel ill, so that kinda made me want to avoid Peat too. But Peatians seem to be among the few on the internet talking about reducing serotonin, though I'm not convinced by, uh, everything Peat. Consuming large amounts of fructose with every meal containing amino acids is an interesting approach to reducing serotonin. But I'm wondering if the insulin response itself from the OJ is enough to send the tryptophan across the BBB.

Maybe today I'll make that carrot salad and see how I feel.

I also learned on my kindle last night, from non-Peat sources, that if you have had serotonin syndrome once you're more likely to get it again. So that may be a factor in why this diet triggered my symptoms. I also learned that many people with social anxiety actually suffer from too much serotonin. I always thought I was just an extreme introvert who just needed to rest a lot after being social, but now I'm wondering if I may be in the small number of people for whom serotonin is a biological cause of their social issues.

So now I know serotonin really is bad for me. I'm glad the diet in this paper worked for the other lady, but it's clearly not for me!

I'll be keeping an eye on tryptophan and serotonin foods for now on. I'm feeling a bit averse to trying the almonds and dark chocolate snack again anytime in the future. But I don't know about increasing fructose. I struggle with stomach bloating, especially since the first round of doxy. And this past week the bloating hasn't been so bad. So maybe going easy on the fructans is still a good idea for me. Hmm...so I need to figure out what I can eat.

I'm still considering carnivore as an option. No fructose, and also no insulin response, might be a good approach for me. But right now I don't think it'll work. We're in the process of moving and currently living with my inlaws and my MIL reads those popular women's magazines which for the 30 years have been touting vegetarianism, or better veganism, is the answer to every health problem. So she passive-aggressively cooks very little meat and stocks up on the sweets. It drives me crazy (especially since it's obviously not "working" for her, she's overweight and got breast cancer last year), but it's not a good battle to pick with her. So right now I think I'll go back to hiding my hamburger patties under leafy greens and veggies.
 

Gondwanaland

Senior Member
Messages
5,094
Got dizzy and nauseous, then started shaking, and my arms and legs felt all tingly (more than normal)
Sounds like when I had reactive hypoglycemia after my insulin assay.
passive-aggressively cooks very little meat and stocks up on the sweets
:(

I am finally getting better, and it is from taking glutamine.

Eating gluten is bad, but going gluten free is worse... We become depleted in magnesium, glutamine and what not...

So my take is if one is supplementing with zinc, magnesium etc and it doesn't help, and even makes things worse, then give glutamine a try. It is the thing to supress my pain and restore my sleep.
 
Messages
52
Sounds like when I had reactive hypoglycemia after my insulin assay.

Yes, I guess it sounds sorta like hypoglycemia. But with SS there's more mania and "manic-buzzing." It feels like you're about to actually spontaneously combust. Without the experience from the Tramadol, I might not have known what was happening. But it was definitely SS.


I am finally getting better, and it is from taking glutamine.

Eating gluten is bad, but going gluten free is worse... We become depleted in magnesium, glutamine and what not...

So my take is if one is supplementing with zinc, magnesium etc and it doesn't help, and even makes things worse, then give glutamine a try. It is the thing to supress my pain and restore my sleep.

Years ago, before we moved a half-dozen times, life upheaval, and me getting sick, I followed Paleo for a while and did REALLY great on it. So that's part of my attraction on getting back on it. I'm also a weirdo who gets sick from sweets and fiber makes me constipated (doesn't matter how much I drink with that fiber, really). And now I know that increasing serotonin is also bad for me, even weirder! So that kinda puts me in a minority where the usual diet advice about "how things should work" just don't seem to work for me.

I'm not sure how gluten-free makes one depleted in glutamine. Just looking up "foods highest in glutamine" got me this http://www.stylecraze.com/articles/glutamine-rich-foods-you-should-add-to-your-diet/#gref which shows a bunch of food I ate tons of when I was Paleo.

I ate the Peat carrot salad yesterday. I ate it a few hours after finishing my second BPC. It was really great. I felt like making myself another bowel of it, but thought to take it easy. I felt really great. Not sad at all. Good energy. Good motivation to do things. I think I'll have another bowel of it today.
 

Gondwanaland

Senior Member
Messages
5,094
fiber makes me constipated (doesn't matter how much I drink with that fiber, really)
me too
I'm not sure how gluten-free makes one depleted in glutamine. Just looking up "foods highest in glutamine" got me this http://www.stylecraze.com/articles/glutamine-rich-foods-you-should-add-to-your-diet/#gref which shows a bunch of food I ate tons of when I was Paleo.
None of those foods will give me GABA-making glutamine (of course not even wheat which seems to be the worst offender).
I ate the Peat carrot salad yesterday. I ate it a few hours after finishing my second BPC. It was really great. I felt like making myself another bowel of it, but thought to take it easy. I felt really great. Not sad at all. Good energy. Good motivation to do things. I think I'll have another bowel of it today.
I am glad it helped you. Coconut oil stimulates receptors of thyroid hormones.

I think serotonin is bad if you aren't making enough GABA. IDK, just something I thought about right now.
 

Gondwanaland

Senior Member
Messages
5,094
A low FODMAP diet for FMS had already been proposed earlier last year:
http://revista.nutricionhospitalaria.net/index.php/nh/article/view/703/793
Nutr Hosp. 2017 Jun 5;34(3):667-674. doi: 10.20960/nh.703.
A low fermentable oligo-di-mono-saccharides and polyols (FODMAP) diet is a balanced therapy for fibromyalgia with nutritional and symptomatic benefits
Marum AP1, Moreira C, Tomas-Carus P, Saraiva F, Guerreiro CS.
Author information

Abstract
INTRODUCTION:
Fibromyalgia is a chronic rheumatic disease producing widespread pain, associated to a major comorbidity -irritable bowel syndrome. Low FODMAPS diet (low fermentable oligo-di-mono-saccharides and polyols diet) has been effective in controlling irritable bowel syndrome symptoms. Overweight is an aggravating factor for fibromyalgia. We studied effects of low fermentable oligo-di-mono-saccharides and polyols diets on fibromyalgia symptoms and weight status.

METHODS:
A longitudinal study was performed on 38 fibromyalgia patients using a four-week, repeated assessment as follow: M1 = first assessments/presentation of individual low fermentable oligo-di-mono-saccharides and polyols diet; M2 = second assessments/reintroduction of FODMAPs; M3 = final assessments/nutritional counselling. The assessment instruments applied were: Fibromyalgia Survey Questionnaire (FSQ); Severity Score System (IBS-SSS); visual analogic scale (VAS). Body mass-index/composition and waist circumference (WC) were also measured. Daily macro-micronutrients and FODMAP intake were quantified at each moment of the study.

RESULTS:
The studied cohort was 37% overweight, 34% obese (average body mass-index 27.4 ± 4.6; excess fat mass 39.4 ± 7%). Weight, body mass-index and waist circumference decreased significantly (p < 0.01) with low fermentable oligo-di-mono-saccharides and polyols diet, but no significant effect on body composition was observed. All fibromyalgiasymptoms, including somatic pain, declined significantly post-LFD (p < 0.01); as well for severity of fibromyalgia [Fibromyalgia survey questionnaire: M1 = 21.8; M2 = 16.9; M3 = 17.0 (p < 0.01)]. The intake of essential nutrients (fiber, calcium, magnesium and vitamin D) showed no significant difference. The significant reduction in FODMAP intake (M1 = 24.4 g; M2 = 2.6g; p < 0.01) reflected the "Diet adherence" (85%). "Satisfaction with improvement of symptoms" (76%), showed correlating with "diet adherence" (r = 0.65; p < 0.01).

CONCLUSIONS:
Results are highly encouraging, showing low fermentable oligo-di-mono-saccharides and polyols diets as a nutritionally balanced approach, contributing to weight loss and reducing the severity of FM fibromyalgiasymptoms.