Fatigue - where to start?

[st134]

Hello,
I need some help to try to fight pretty bad fatigue. Dono where to start as what I try fails.

I have been experiencing anxiety for like 15 years. Last winter I crashed badly after being fired from work, over-trained, abused alcohol, used benzos, used stomach acid-lowering meds, used anti-histamiens, ate low carb, lost 15lbs in 2 months. I quit everything at that time - sweets, smoking, all addictions. My BP dropped to 105/60 pulse down to 45. I was so tired that I could not get out of bed.
Brain fog, lack of interest in life, no motivation at all, heavy depression were hunting me for about 2 months after I stopped smoking. Than brain fog lifted a bit, but i was still very tired and de-motivated.
SJW picked me up a bit so I could walk outside for some. Betaine HCL helped a bit with digestion (stomach acid was totally gone). Than I started Schizandra and my energy started to come back, although together with Betaine I was feeling over-stimulated all the time. Than I resumed smoking and soon I lost energy again.

Recently I tried Jarrow B-right and seemed to make me calm for like 3-4 hours and mybe give me a bit of energy. One day I took 2 pills and I was sweating so bad all night. I was taking also Grape Seed Extract and CoQ10. I got a feeling like electricity is passing through my arms and legs. I was eating a lot of sulphur foods and meat. I red that I am either not methylating well and sulphur is a problem. Also ammonia from meat causes excitotoxicity. I cut those and I am a bit less over-stimulated.
I am pretty sure my adrenals are in poor condition. Smoking helps me to elevate blood glucose but also makes me tense. I tend to go hypoglycemic and have to eat every 3 hours, but have no appetite. I can't sleep either - 4-5 hours on average.

Things I have tried:
Optizinc - almost no effect while I had the blood glucose stable 1-2 months ago; now feels like its causing glycemia
Magnesium Malate - calms me down and gives energy, but kills stomach acid
MethylB12 1000 - not sure if I felt anything
Pirodoxine 50 mg - quickly caused me to feel very bad; P5P caused nothing if I recall it
SJW - can feel nice serotonin in a day or 2 than depresses me
Schizandra - since smoking resumed, makes me too tense
Panthetine 450 mg - gave me energy, made my skin oily, made me swaty, maybe tense, skin irritation
Garlic and bee pollen - cause glycemia
Creatine - kidney pain
R-ALA - glycemia
NAG - glycemia
Fish oil - not doing good on it, but can't tell exactly.. maybe depression
Betaine, Lecitin, eggs - make me so tense that my muscles hurt

I am looking at a potential problems:
1. Smoking is obviously bad for me, but I am so drained now that I am afraid to stop. Is methylation taking a hit when I stop? Most obvious is nicotine stimulates adrenals. That raises blood glucose and at lest I can eat something and not get totally depressed. How should I deal with this?
2. I might have deficiency on some B vitamins. B1 seems very logical. I feel a bit dumb and cant tolerate choline and sulphur foods. Maybe B1 is tanked and I don't create acetylcholine. Other neurotransmiters seem to be low too - 1 pill HTP can make me real tired for a few days. Oatmeal with yoghurt and banana make me calm. Maybe due to Thiamine. But I keep feeling a lump in my stomach and throat - low stomach acid it seems.

I am not sore what to eat and supplement and how much. My life is down the drain and I don't have energy to go back to work.

Any help would be nice.

Thank you!

37 male

 

[Bansaw]

Sublingual B12 has helped me in terms of endurance and energy. I am working out a few times a week with it. I went sublingual because my absorption was poor.
Adeno B12 & Hydrox B12, with sublingual b2 as well. Took a month or two to kick in.
I'm doing B12 because I had a 23andme Methylation test and it confirmed that I needed help in the b12 area.
(Seeking Health brand)

 

[wastwater]

Maybe you could try swapping smoking for vaping or nicotine gum,I have trouble with the tired and wired effect can't shut down at moment

 

[TigerLilea]

Have you been to a doctor and had testing done?

 

[st134]

I have been to numerous doctors past 15 years. Antidepressants is all I get from them.

I am suspecting the following is happening:
- I am stressed as I don't feel well and can't get on with my life - blood glucose drops, tired, wired.
- Suboptimal adrenal function due to stress, poor nutrition and lack of sleep.
- Blood acidosis due to increased potassium excretion (stress), smoking, physical activity (when I can), poor food choices
- Not enough calories as I can't eat protein (due to acidosis) and I can't eat enough carbs (due to insulin spikes)
- Than I can't sleep due to glycemia at night. Stress hormones remain high ..and it is vicious circle.

Smoking really makes me wired and hungry. It creates hypoxia and lactic acidosis. But I can't quit now as I am emotionally very unstable.. Nicotine gum or patches sound like a good idea. Thanks @wastwater .

B12 is also a good idea as it increases oxygen carrying capacity, but I am not sure I can tolerate it. My B12 was below optimal last time I checked. I have MethylB12 1000mcg sublingual. Can I take that? Seems to be far more complicated.

Diet is a big problem. I am not sure how to manage all I need to:
- Get enough fat to slow digestion and eliminate insulin spikes. But fat often comes with protein.
- Get enough carbs, but not too much as to spike insulin.
- Get enough calories and keep blood alkaline. Potassium might be depleted as I have the symptoms.
That is far too complicated for my tired mind..

I dono how to get enough sleep, prevent glycemia, prevent acidosis, eat enough calories .. and to calm my mind and get my energy back some day.

 

[Woolie]

We probably should point out to @st143 that this is an MECFS forum, just in case they have accidentally posted in the wrong place.

So, this forum's primarily for people who have been diagnosed, or suspect they might have ME/CFS. This is an incapacitating disease - in fact, it's not diagnosed until the person's activity levels have been reduced by at least 50% for at least six months. It often (but not always) has a sudden onset, commonly a severe viral illness like mononucleosis or flu.

People with mild MECFS are often still in employment, but struggling to stay there. People with severe MECFS are housebound and often bedbound.

Everyone is welcome to post here, but the forum is probably best suited to patients with MECFS, those that support them, and those who care for them.

If you think you might have this disease, but you're still not sure, then this is a good place for you too.

Apologies if you already know all this.

 

[st134]

@Woolie

I have not explained it all as my posts would have been too long. I lost my job in January. I was so tired that I had to get back home and go to bed every afternoon. I have been unemployed since than. And I am not able to go back to work. Unable to even go work in the back yeard for an hour.
In my country I don't think this diagnoses exists - CFS. Neither can I get any proper lab testing even saliva testing is not available..


In case my posting here is inappropriate, please, accept my apologies!

 

[Woolie]

@Woolie

I have not explained it all as my posts would have been too long. I lost my job in January. I was so tired that I had to get back home and go to bed every afternoon. I have been unemployed since than. And I am not able to go back to work. Unable to even go work in the back yeard for an hour.
In my country I don't think this diagnoses exists - CFS. Neither can I get any proper lab testing even saliva testing is not available..


In case my posting here is inappropriate, please, accept my apologies!

Oh no, really, i didn't mean to say you're not welcome! Everyone is welcome whatever their reasons and health state. It just saves some people a lot of time if we clarify right from the start.

From your story, it definitely sounds like you've come to the right place. What country are you in? (okay. if you prefer not to say).

 

[taniaaust1]

Hi st134, hi, You are quite welcome here. I think members (myself included) just wanted to point out that you may not have ME/CFS from your post. Those who dont have a "range of symptoms" which flare after exertion in a delayed kind of way, it has been shown that 40-60% have got a misdiagnoses of ME/CFS and were found to have a diferent diagnoses when more extensively tested.

We certainly arent saying that you are not severly affected with the fatigue but symptoms manifesting like yours can often turn out to be something else and you should keep that in mind if you dont have delayed symptom flares with exertion (not just intense fatigue with excertion). I suggest to check out the Canadian CFS consensus criteria as that is a much better diagnostic criteria for CFS and doesnt lead to so much misdiagnoses. http://www.sacfs.asn.au/download/consensus_overview_me_cfs.pdf

There are two different things in your posts which are standing out to me which possibly is causing your whole issues.

That raises blood glucose and at lest I can eat something and not get totally depressed.

Smoking helps me to elevate blood glucose but also makes me tense. I tend to go hypoglycemic and have to eat every 3 hours,

Not enough calories as I can't eat protein (due to acidosis) and I can't eat enough carbs (due to insulin spikes)

So you've been diagnosed with hyperinsuliemia? I have a specialist for that which is a leader in the field of hyperinsulinemia and in research in this area... as in some people that can cause a big range of symptoms.. affect the whole body in various ways and some like myself it can give very severe symptoms. He calls it the "pandora's box of illnesses". Doctors generally arent aware that the high insulin for some can cause big problems. Anyway, I suggest to check out his website http://www.agale.com.au/PANDORA.htm

He has seen many who got wrongly diagnosed with ME/CFS who had just this issue.

I got missed by over 30 doctors that i had severe insulin issues affecting me and that dr has completely cured some of my symptoms, the worst is how abnormally high insulin spikes affect my moods.. I can get violent mood swings with a high spike if I breach my diet (to the point that I got in trouble with the police due to what insulin spikes did to me.

Being on the right diet for my insulin problem has fixed the bad GERD (reflux) I had so Im no longer on prescription drugs for that, my immune system is functioning a little better (less sore throats) and I rarely wake up fatigued as long as I stick my insulin diet (as long as I havent ME/CFS crashed) and it also fixed my PCOS (polycystic ovary syndrome) as far as I then had regular periods for first time in my life. All this stuff in my case was done by having hyperinsulinemia

Anyway, your post sounds to be fairly clear you have this issue going on which also by your post I dont think is being treated properly. Have you had a specialist in hyperinsulinemia dealing with your high insulin spikes?

Brain fog, lack of interest in life, no motivation at all, heavy depression were hunting me for about 2 months after I stopped smoking. Than brain fog lifted a bit, but i was still very tired and de-motivated.

Smoking really makes me wired and hungry. It creates hypoxia and lactic acidosis. But I can't quit now as I am emotionally very unstable.

The other thing which stands out in your post is you appear have some quite bad depression and possibly anxiety going on.. that can also give you many of the symptoms you said including feeling like lumps in the throat. One of my family members had depression and that was one of her symptoms with it. Your insulin issues though could well be even causing all your mood problems, by the sounds of it your insulin and sugar problems is causing you a lot of issues.

Diet is a big problem. I am not sure how to manage all I need to:
- Get enough fat to slow digestion and eliminate insulin spikes. But fat often comes with protein.
- Get enough carbs, but not too much as to spike insulin

You seem to have a good understanding of your hyperinsulinema to know what you should be doing.

To treat my hyperinsulinemia, I've found that I need to be a lower carb diet then a normal diabetic one. Normal diabetic diets still have my insulin spike to high (my specialist told me even to not have yogurt).

There are other differences too if you need to be on a hyperinsulinemia diet
1/ You need full fat dairy products and not skim ones as the fat in the dairy slows down insulin spiking.
2/ I've been told I need to eat meat or eggs every single meal as the fat/protein helps slow down the insulin spikes and of cause these have no carbs.

My diet for hyperinsulinia when Im following it properly (this will give you an idea to the degree some of us need to cut our carbs back)

- Im only allowed to have about 12-15 nuts per day (as they have some carbs)
- only 1 small piece of low carb fruit per day to avoid too much carb such as fructose eg no bananas, no oranges as they are higher carb
- No cereals, grains, as they are too high in carbs except Im allowed one piece of bread per day which is about 12-17g carb or a very small amount of rice. I try to avoid bread as I have the celiac gene and lots of that in my family). Note things like beans and pulses can have quite a bit of carbs in them so I avoid too
- full cream dairy only
- low carb veg only (no potatoes, no corn.. limited root veg). If one has hyperinsulinemia causing symptoms. Have lots of low carb veg lettuce, cauliflower, brocolli, spinach, zuccini, mushrooms etc


Meals are basically meat, fish or eggs (to help prevent insulin spike) and low carb veg

Diet is a big problem. I am not sure how to manage all I need to:
- Get enough fat to slow digestion and eliminate insulin spikes. But fat often comes with protein.
- Get enough carbs, but not too much as to spike insulin

Smoking is obviously bad for me, but I am so drained now that I am afraid to stop. Is methylation taking a hit when I stop? Most obvious is nicotine stimulates adrenals. That raises blood glucose and at lest I can eat something and not get totally depressed. How should I deal with this?

Smoking helps me to elevate blood glucose but also makes me tense.

Smoking really makes me wired and hungry. It creates hypoxia and lactic acidosis

I personally think you do need to give up that smoking, giving up any addiction isnt easy but if it makes you tense, its actually adding to your mood issues. and why do you want to elevate your blood glucose when you have hyperinsulinemia.. its probably the worst thing you could be doing for it. Raising blood glucose causes the insulin to respond and then raise too to try to bring it down and then it wildly spikes.. well then you have hypoglycemia cause you triggered all that (I used to have that happen too). You need to create stability with diet.

If the wrong diet is causing your mood problems, that's what you need to get a grip on so you arent trying to smoke to deal with your moods. Throwing lots of supplements at yourself probably wont help much unless you get a suitable diet for yourself. Your stomach acid issues are all probably cause of the insullin issue, my specialist told me GERD (reflux) was one of the most common symptoms he sees with those with this issue.

. I was eating a lot of sulphur foods and meat. I red that I am either not methylating well and sulphur is a problem. Also ammonia from meat causes excitotoxicity.

If you have issues with those it sounds like you possibly have some similar gene mutations as I do. I think was my CBS mutation can make me have issues with sulphur foods.. and in fact I was getting issues with sulphur foods eg too much brocolli or eggs gives me problems so this all impacted on my diet for the insulin problems. I had the genotype too which can cause meat to have issues (as at times my body gives off an ammonia smell at times) but cause of my insulin issue being so severe... I need still to eat meat as an essential part of my diet.

You said you had lost weight... are you underweight? I guess in that situation a very low carb diet may be a big problem

 

[st134]

@Woolie let's just call it an Eastern European country

@taniaaust1 Hello and thank you for the comprehensive answer! It is indeed insulin issue and I am working on it. Depression is there too and it is quite bad. I am reading and experimenting a lot and trying to make sense of what is happening to me. Unfortunately, life goes on and I have to get on my feet. Here is what I have found so fat (hope it helps you too):
I have depleted my body of various substances for energy production and now I can't produce ATP. ATP is needed to produce SAMe which degrades dopamine to norepinephrine. The last gives mental energy and is important to work with cortisol to maintain blood glucose levels. When SAMe is low, homocysteine builds up as methylation is impaired:
http://www.benbest.com/health/Meth.html
Sulfur, choline and protein containing foods can not be methylated well and build more homocysteine, glycine and ammonia. That is why both of us feel bad with eggs, broccoli and meat.
Methylation is supported with B6, B9 and B12. I surely have problems with all of them Atiacids for 15 years might have lowered B12. Diet poor in greens depletes B9 and smoking deactivates B6.
However, methylation requires adequate ATP production, which requires B1, B2, B3 and B5. B2 and B3 are very important as B2 creates FAD and B3 creates NAD. B5 creates Acetyl-CoA.
So, methylation has to be started slowly and has to be complemented with ATP producing supplements - B vitamins, D-ribose, Q10, L-carnitine.
Chronic stress alters electrolytes like depleting potassium and quick increase in methylation can cause a crush as it depletes potassium even more. Low potassium contributes to acidic blood and ammonia problems I think.So diet high in potassium and additional supplementation is desired.

In addition, insulin increases dopamine synthesis and I guess we both have slow COMT. I also have high estrogen, which slows down COMT even more. Cortisol is also cleared by COMT.
High carbs, physical activities and stress increase insulin and we go nuts.

I wish I had a few more years to relax and give my body rest and good food. I am doing what possibly I can with my diet to not spike insulin, but also to provide enough B vitamins and potassium. I am forced to eat bread at the moment for the Bs, but I try to eat enough starch and fat with it to slow digestion.

I am thinking to start supplementing B vitamins + Vit C + potassium. Problems is that I can't find B complex with Hydroxocobalamin and not Methyl and with active B6 and B9.

 

[st134]

Sublingual B12 has helped me in terms of endurance and energy. I am working out a few times a week with it. I went sublingual because my absorption was poor.
Adeno B12 & Hydrox B12, with sublingual b2 as well. Took a month or two to kick in.
I'm doing B12 because I had a 23andme Methylation test and it confirmed that I needed help in the b12 area.
(Seeking Health brand)

@Bansaw

Hello,
Could you share how to start on Hydrox B12 and how to carry on with it? Doesn't it require the addition of folate at some point? What about B2?

I tested B12 in the spring and it was at 466, although I have been on atiacids last 15 years.

My main symptoms now, besides fatigue, are:
-tingling/vibration in legs and arms
-alternating anxiety and depression (swings by the hour)
-head/ear noise
-intolerance to any cholline containing food (feels like it is frying my brain)
-foods high in protein increase ammonia and make me real thirsty. I they to eat more carbs and salt

I think I am stabilizing a bit the blood sugar and ammonia problem.
However, the rest of the symptoms are nasty. Fatigue, tingling and anxiety look like B12 defficiency.
Cholline problems might be due to low B12 too. I read that B12 increases acetylcholinesterase. Nicotine, besides inhibiting it, is stimulating muscarnic receptors and making my whole body tense and shaky.

Not sure if my logic is right. I know that fatigue is less in the morning. Protein, smoking, choline, lack of salt, too much water, make things worse. And if I calm down for just a few hours in the afternoon - brain fog, feeling of lack of oxygen in the brain, increased fatigue, heart rate lowers significantly.. Smoking fixes that a bit.

 

[st134]

I did B12 lab yesterday and it is 372 from 466 in May (range 246-911).
Tested Magnesium in blood and it is at the bare minimum. Other electrolytes are also lower than before. Some approaching the minimum, like sodium. I am quite sure that Vitamin C is also very low from years of bad diet and smoking.
I read that ammonia detox requires Magnesium, Vitamin C and oxygen (helped by B12). So yeah.. I am in poor condition. I can't detox ammonia. Ammonia makes me tense, tired and short of breath. And I am dehydrated too as I had to drink too much water to flush out urea.

I could use some advice on how to replenish B12 the right way. Should I take shots? I am pretty sure they use cyanoB12 here and not sure if this is any good. I have MethylB12 1000. Is it a good idea to use half a tablet maybe?

Also, how should I replenish magnesium since it lowers my stomach acid? Transdermal maybe or before/between meals?

I started taking plain Vitamin C, but I can take very little - like 200-300mg. More than that and it brings brain fog. I read that it diverts methylation to making glutathinone and BH4 suffers, leading to low neurotransmitter production.

I would appreciate some help and I am hoping that what I discover could be of some help to someone at some point.

BTW turns out high insulin is from months of starvation as I could not eat due to low stomach acid, which was most likely due to low salt intake and low chloride. Now when I eat more salt, digestion is better, I can eat more and don't get those severe glycemia episodes.

 

[Eastman]

I could use some advice on how to replenish B12 the right way. Should I take shots? I am pretty sure they use cyanoB12 here and not sure if this is any good. I have MethylB12 1000. Is it a good idea to use half a tablet maybe?

I don't know whether you need shots but I don't see why you can't use half a tablet.

Have you considered taking adenosylcobalamin as well? Some people seem to do better after adding it.

Also, how should I replenish magnesium since it lowers my stomach acid? Transdermal maybe or before/between meals?

Maybe use magnesium chloride?

 

[st134]

Thank you, @Eastman !

I have ordered HydroxoB12. Isn't it a good choice? Should I also order adenosyl? I see almost all Adeno I can buy products contain folic acid. Not sure if that is good. What dosages should I start with and from what?

I am now using magnesium malate and it helps a great deal.

I think a big problem is my adrenals. Even more likely circadian rhythm. In the evening my body temp starts to rise. If is smoke a bit more it can rise too much. This can happen in the day too. In the morning it is a bit below normal. Same with heart rate and blood pressure. If I take Zinc or Vit C (even as low as 200-300mg) I get symptoms like low blood sugar. Sure they are lowering cortisol. It goes like morning average-low, noon high, afternoon average-low, evening super high, at night I suppose higher than normal as I wake up.
This is where smoking is messing up. It is stimulating cortisol and it is jumping up and down all day.
I am thinking of a way to quit, but how to do that with already low dopamine, reactive hypoglycemia and fatigue
I was thinking to buy Phosphatydlserine and take it in the evening to fix rhythm, but I am afraid it could lower cortisol too much.

 

[Eastman]

I have ordered HydroxoB12. Isn't it a good choice? Should I also order adenosyl? I see almost all Adeno I can buy products contain folic acid. Not sure if that is good. What dosages should I start with and from what?

I've never used hydroxocobalamin, although I understand some do well on it, and is the basis of richvank's simplified methylation protocol.

The adenosylcobalamin that I have used is Source Naturals Dibencozide Coenzymated B-12. It does not contain folic acid.

Freddd said that there is no one ratio of AdoCbl to MeCbl that is ideal, although he did say that "a 1:1 ratio appears to work reliably".

An alternative ratio is 3:1, which is apparently the ratio in the body, according to the manufacturer of B12 oils.

I am now using magnesium malate and it helps a great deal.

Glad it works. I presume you don't have much problem with stomach acid now.

I think a big problem is my adrenals. Even more likely circadian rhythm. In the evening my body temp starts to rise. If is smoke a bit more it can rise too much. This can happen in the day too. In the morning it is a bit below normal. Same with heart rate and blood pressure. If I take Zinc or Vit C (even as low as 200-300mg) I get symptoms like low blood sugar. Sure they are lowering cortisol. It goes like morning average-low, noon high, afternoon average-low, evening super high, at night I suppose higher than normal as I wake up.
This is where smoking is messing up. It is stimulating cortisol and it is jumping up and down all day.
I am thinking of a way to quit, but how to do that with already low dopamine, reactive hypoglycemia and fatigue
I was thinking to buy Phosphatydlserine and take it in the evening to fix rhythm, but I am afraid it could lower cortisol too much.

You're probably right about smoking messing up your cortisol rhythm: Smoking, cortisol and nicotine. I don't have experience in this area though.

I know someone who takes 100 mg of phosphatidylserine every evening. No noticeable effect so far.