Burning / circulation issues after meal - any ideas?

[CFSTheBear]

Posting here because although I don't have any specific stomach symptoms, this is a post-meal thing and it's somewhat driving me up the wall. Would be greatly appreciated of any advice or insight, as the difference in my quality of life is probably one notch up on the general functionality scales for ME/CFS (probably 3/10 to 4/10).

Around half an hour after my lunch, I experience:

Mild flushing in my face
A feeling of burning in the nose, face, dry eyes
Circulation issues, cold feet and hands
Limbs generally weaker
Feel completely wiped for the rest of the day.


I thought I'd nailed it when I removed a few foods from my diet and hadn't experienced these specific symptoms for over a month. They'd been plaguing me for over a year so this was greatly appreciated. However, they returned yesterday and today with a vengeance, and I'm not quite sure why.

I will be going over my ingredient lists for yesterday and today, but I wanted to ask if anyone had any insight on what these symptoms could be indicative of? I'm on the mild end of severe ME (if there is such a thing) and also have a POTS diagnosis. Was tested for Tryptase recently and that ran normal, and I am following a low histamine diet to see if there's any improvement.

Any help greatly appreciated!

 

[ljimbo423]

What about any supplement changes? Niacin can cause flushing and a burning feeling in the face. It does also sound like it could be a histamine issue.

Jim

 

[CFSTheBear]

What about any supplement changes? Niacin can cause flushing and a burning feeling in the face. It does also sound like it could be a histamine issue.

Jim

Thanks - I did think about that, but everything has been very consistent recently, no new supplement since last year :/

 

[Runner5]

Any exposure to Arsenic? Eat a ton of rice grown in the Southern US? That's pretty strange symptomology, I would look carefully at supplements because it does sound like a reaction. Sometimes we don't get a reaction every time we ingest what we're allergic to which took me decades to figure out since I'm allergic to milk but really didn't want to give up cheese or ice cream. I would chalk up the times I didn't get sick as proof I didn't have a problem with dairy. Same with coffee -- so man, I think i have a river of denial running through my house when it comes to food. I get sick after I eat about 20 minutes afterwards with extreme fatigue. I think it got better with using iron pills and electrolytes - but my doctor thinks it's my heart.

 

[RWP (Rest without Peace)]

@CFSTheBear

While the first thought I had was the same as @ljimbo423, I wonder if the problem could be partly related to digestive insufficiency as well. The symptom that made me think of that was feeling tired after eating. One, we all know that digestion takes an enormous amount of energy. Two, if one is low in stomach HCL or pancreatic enzymes, that creates a greater strain on the whole body, including the heart (maybe why many heart attacks occur around mealtime). So if you could improve that part, perhaps the other seemingly unrelated symptoms might improve.

RWP (Rest without Peace)

P.S. You mentioned being tested for Tryptase. Remind me what that is again? Sounds like an enzyme.

 

[RWP (Rest without Peace)]

@CFSTheBear

One more thing I wanted to clarify. Usually, people assume that low HCL and enzymes wouldn't lead to burning, but actually this has been shown with things like GERD (aka. acid reflux). If treated properly, the increased HCL (such as Betaine Hydrochloride) can prevent acid from entering the esophagus by chemically triggering the upper sphincter to stay shut.

As far as systemic symptoms, the lack of proper food digestion could lead to too-large particles making it into the bloodstream (esp. if you have leaky guy, which most of us do) and causing a histamine response.

RWP

 

[Richard7]

CFS TheBear symptoms 3 to 5 are clearly entirely consistent with POTS.

My "solution" has been to reduce other demands on my body by going to bed after eating or sitting in a reclining chair with my feet up. Indeed when it is bad I eat with my feet up.

The first two symptoms could also be consistent with POTS. If you are having an immune reaction to something that you are eating it could I cause these sorts of symptoms, and such a reaction would lead to vasodilation which would make the PoTS even worse.

I have not really got a solution. I do not eat till 12 and then do very little in the afternoon. (Even less might be more accurate.) I use betaine HCL+pepsin, pancrelipase (creon) and Klaire labs Sibb Zymes (which are plant derived enzymes that are meant to emulate the enzymes tethered to a healthy person's small intestine).

I used to always also take ox bile, but I have found that if I eat liver every day or two I seem to produce enough of my own.

I sprinkle one of those potassium and sodium chloride mixtures liberally over all my food and add it to all my drinks.

I got much worse earlier this year after taking antibiotics to try to get rid of a parasite. I was suddenly unable to eat legumes, eggs and dairy, and was horizontal most of the time with lots of those days where you hope you can find the energy to get up before your bladder gets much fuller etc.

So I have obviously taken probiotics. I found that B. longum bb536 and e. coli nissel 1917 worked really well, when I cycled off these and started taking kyodphilus 9 strain (something I had liked in the past) I was straight back on the ground.

I am currently on L Rhamnosus GG and B infantis (Align) which seem to be pretty good too. Well I am sure about the first , I only started the second yesterday, after deciding that another mixture of bifidos was not working for me.

I am pretty much following the sort of advice that Ken Lassesen gives on https://cfsremission.wordpress.com/.

I have also found in general that taking things that decrease permeability and avoiding those that increase it helps. I found this video by John Bagnulo and the paper's he references useful

I hope something in this helps.

 

[Dmitri]

This is currently one of my worst symptoms. An hour or two after eating, it feels like there's boiling water in my mid-lower abdomen, it radiates from there all over my body and I feel burning and throbbing everywhere, combined with a nasty malaise. Most prominently, I feel it in my face, and my hands and feet, which feel hot rather than cold.

Some foods trigger it worse than others during certain periods, completely unpredictable. Based on the delayed reaction, I would speculate that it begins when food enters the small intestine.

 

[jeff_w]

@Dmitri - Have you ever been tested for SIBO? Small Intestinal Bacterial Overgrowth. I used to get recurring SIBO. A course of Xifaxan took care of it each time.

 

[CFSTheBear]

Thanks all for your responses, @Runner5 @RWP (Rest without Peace) @Richard7 @Dmitri! Much appreciated.

My working theories are: some symptoms exacerbated by POTS, and blood being drawn to the stomach. Next week I am starting a drug that I hope will improve my pots, so I will have a look at whether it affects this too.

In addition, the more allergy based reaction may be some kind of histamine thing, and looking back over my food notes maybe I reached some kind of histamine threshold rather than eating a particular thing which set off a reaction. I.e. day 1 ate something which slightly raised histamine, day 2 the same, etc etc, and then a reaction is caused after a threshold is reached.

I have just started taking cetirizine and ranitidine at the recommendation of my gastroenterologist, so it will be interesting to see what effect they have, if any. Indeed your point about low stomach acid @RWP (Rest without Peace) might mean that ranitidine might exacerbate this...but I guess I could always do the bicarbonate test a few times to see what stomach acid levels are like. Oh, and tryptase is part of a general look for MCAS, but isn’t definitive and normally has to be looked at with other clinical signs.

Next week I am also booked in for a stomach emptying test and a sibo breath test, so will be interesting as to what that brings (thanks also for your comment @jeff_w).

 

[Dmitri]

@Dmitri - Have you ever been tested for SIBO? Small Intestinal Bacterial Overgrowth. I used to get recurring SIBO. A course of Xifaxan took care of it each time.

There was no hydrogen breath test done on me yet, although I am certain that I have it, probably as a consequence of dysmotility. Eating fructose gives me bad hydrogen-sulfide gas, which is another sign of it. I am vary of antibiotics, especially repeat doses, since all my problems started with them. Curious to know how many of my symptoms could be due to SIBO.

@CFSTheBear I tried taking H2 blockers, all they did was make me even more hungry. That's another thing, I get bad pain after eating, but if I don't eat for more than several hours, I will be attacked by gnawing hunger pains, which leaves me no choice.

I only had an upper GI endoscopy done, all it showed was mild inflammation and a duodenal ulcer, the pain is definitely out of proportion to the visual findings, and that doesn't begin to explain why it's radiating throughout my body. I think it's some kind of intestinal small fiber neuropathy or a visceral form of CRPS (complex regional pain syndrome) causing it.

The only thing that helps me with the peripheral pain (on a good day) is strenuous exercise, but I didn't recommend that because it will probably make it worse if you have ME.