Exercise intolerance - non-classic PEM?

[Thinktank]

Ever since becoming ill i have some kind of exercise intolerance but i'm not sure if it's PEM.
I don't become extremely tired after overdoing exercise, but i do feel really sick for a couple of days.

I did some cardio last night after feeling quite ok for the past week, then this morning i did some strength training with dumbells and barbells.

Within an hour after training i noticed the "attack" coming up;

- Brain fog
- Polyuria (frequent urination)
- Above leads to pain in joints and muscles, it feels like no fluid is left in them because i peed it all out. My skin dries up as well.
- Moving my muscles feels like they're loaded with lactic acid.
- My eyes start to itch
- Overstimulation
- Anxiety attacks, racing mind, doom thinking. <-- this is really significant
- Bowels start to hurt
- Diarrhea
- Burning feeling in lungs
- Disturbed sleep
- I can't cope with any form of mental stress.

The strange thing is that i can counter the attack with the use of an anthistamine, a leukotriene inhibitor, symbicort and fish oil. Which all block/antagonize metabolites from mast cells.
It only reliefs the symptoms by a bit but it helps.

So is this a mast cell attack? Or ME related PEM?

 

[Runner5]

Do you by any chance have insulin resistance or diabetes?

I do, and that's pretty much what happens to me. I really have to watch out for the frequent urination, that's the canary in the coal mine that can be easily overlooked, but it dumps your electrolytes and your Thiamine B1 - it can dump B1 by 75% causing a type of "BeriBeri"

A lot of time my blood sugar readings are within range, but I can tell by how much I'm running to the loo the actual story.

After I work out I have a recovery shake waiting for me, it has some protein powder, a scoop of L-Glutamine, a little L-Tyrosine (instant coffee and some almond milk because that's how I roll) and I put a little coffee creamer in there for taste. I also pop a Magnesium.

During my workout or before I'll use a Vega pre-sport, because I want some sugar on board for my muscles and I tend to work out for about 45 minutes.

For me anxiety, irritability, depression - it's always an amino acid issue. And it usually goes away within 20 minutes of taking L-Tryosine, although if I'm really in a funk I'll also take L-Tryptophan before bed.

I've tried to quit most supplements but I haven't been able to quit amino acids, I have to have them every single day or the wheels fall off. I guess I don't digest protein well enough to get what I need. I gave up on eating meat altogether as it just sat in my gut and camped, roasted marshmallows, sang songs and did NOT want to LEAVE. I'm like -- c'mon already. I think maybe I could do fish better or eggs? I don't know, my gut is hyper sensitive and judgemental and I feel at the mercy of its whims sometimes. I just have made a commitment to babying it, keeping it fed, allowing it coconut ice cream and maybe we can sign a peace treaty someday soon.

So you know, you might try some aminos, a recovery shake (honestly my favorite is Biochem and it's the highest rated for clean protein shake) - and I have a bottle from NOW that is just Amino Acids.

Pain in joints and muscles is no bueno, you're probably losing muscle and it's breaking down and inflamed. You might also pick up some electrolytes (Vega makes awesome electrolyte mix) I think you might find those helpful.

It is really important to keep moving and keep your muscle tone up if at all possible. I hope these hacks might help or give you something to try.

 

[Runner5]

Oh if you ever have to be out and about in the heat, walking around the mall, or having a friend or relative drag you places -- having a sport drink like athletes use is a life-saver. I use Tailwind, but there are some good brands out there.

https://www.amazon.com/Tailwind-Nut...=UTF8&qid=1533233103&sr=8-2&keywords=Tailwind

 

[sb4]

To hijack your thread I will say that I don't get PEM, but I don't get this over delayed symptoms either. I just get an instant buildup of lactic acid when preforming even minor activities. Combined this with my heart stuff and it makes me think that my intolerance to exertion is entirely due to POTS/dysautonomia/poor blood flow.

 

[Snowdrop]

You can read about the various categories of symptoms of PEM (referred to as PENE by ICC) here:

https://me-pedia.org/wiki/International_Consensus_Criteria

PEM is not about getting tired after exertion.

 

[Thinktank]

Do you by any chance have insulin resistance or diabetes?

I do, and that's pretty much what happens to me. I really have to watch out for the frequent urination, that's the canary in the coal mine that can be easily overlooked, but it dumps your electrolytes and your Thiamine B1 - it can dump B1 by 75% causing a type of "BeriBeri"

A lot of time my blood sugar readings are within range, but I can tell by how much I'm running to the loo the actual story.

After I work out I have a recovery shake waiting for me, it has some protein powder, a scoop of L-Glutamine, a little L-Tyrosine (instant coffee and some almond milk because that's how I roll) and I put a little coffee creamer in there for taste. I also pop a Magnesium.

During my workout or before I'll use a Vega pre-sport, because I want some sugar on board for my muscles and I tend to work out for about 45 minutes.

For me anxiety, irritability, depression - it's always an amino acid issue. And it usually goes away within 20 minutes of taking L-Tryosine, although if I'm really in a funk I'll also take L-Tryptophan before bed.

I've tried to quit most supplements but I haven't been able to quit amino acids, I have to have them every single day or the wheels fall off. I guess I don't digest protein well enough to get what I need. I gave up on eating meat altogether as it just sat in my gut and camped, roasted marshmallows, sang songs and did NOT want to LEAVE. I'm like -- c'mon already. I think maybe I could do fish better or eggs? I don't know, my gut is hyper sensitive and judgemental and I feel at the mercy of its whims sometimes. I just have made a commitment to babying it, keeping it fed, allowing it coconut ice cream and maybe we can sign a peace treaty someday soon.

So you know, you might try some aminos, a recovery shake (honestly my favorite is Biochem and it's the highest rated for clean protein shake) - and I have a bottle from NOW that is just Amino Acids.

Pain in joints and muscles is no bueno, you're probably losing muscle and it's breaking down and inflamed. You might also pick up some electrolytes (Vega makes awesome electrolyte mix) I think you might find those helpful.

It is really important to keep moving and keep your muscle tone up if at all possible. I hope these hacks might help or give you something to try.

I strongly suspect an issue with insulin or glucose metabolism yes, but doctors have not taken me very serious on it. 10 years ago i was sent to an endocrinologist which did a glucose tolerance test on me because of fatigue following a meal, the result showed elevated levels. I still can't drink a can of soda or anything loaded with sugar, it sends me into a foodcoma within 20 minutes!

I have a glucosemonitor and the results always come back fine. Fasting glucose measured in lab is also always fine.

You mention Thiamine. I tried Thiamine 6 years ago and noticed an immediate effect, like it cleared my brain fog. I had to stop using it after 2 days because of an IBD-flare.

Which amino acids are you taking? Just a BCAA formula? I find it helps me too, it really gives that bit of extra energy during a workout but somehow it highly increases my metabolism! I don't want to loose too much fat because i'm already so skinny.

I suffer from IBD, many allergies & inyolerances and now possibly also MCAS. Meat is actually one of the only few things i do digest and tolerate. Dairy and vegetable proteins on the other hand....

I was very into weight training before i became ill. Lost about 25 kilo's in muscle mass. I'm skin over bone and unable to gain any weight, no matter what i eat.

 

[Thinktank]

To hijack your thread I will say that I don't get PEM, but I don't get this over delayed symptoms either. I just get an instant buildup of lactic acid when preforming even minor activities. Combined this with my heart stuff and it makes me think that my intolerance to exertion is entirely due to POTS/dysautonomia/poor blood flow.

Yes, i know what you mean. I do get that also often when i've eaten too many carbohydrates.

 

[Thinktank]

You can read about the various categories of symptoms of PEM (referred to as PENE by ICC) here:

https://me-pedia.org/wiki/International_Consensus_Criteria

PEM is not about getting tired after exertion.

Great, i was searching for something like that.
I never really classified my exercise intolerance as PEM, more like a symptom from my Crohn's disease or misdiagnosed "lyme disease".
Recently i had a colonoscopy and my large bowel is clear, still have to do a pillcam for my stomach and small intestine next week but the Crohn is probably in remission. It's not lyme and not Crohn causing the exercise intolerance. So what then? ME after all?

CHECK 1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
CHECK 2. Postexertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.
CHECK 3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
CHECK 4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
CHECK 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
And the neurologist told me it's basicly my own fault because i'm in bed so often.....

 

[Thinktank]

I'm so fed up, i was doing a bit better after many monts of pacing and then this happens (again).
I moved back to my homecountry to find answers, seen so many doctors and none can help me. Feeling misunderstood is an understatement!
I MUST get partly functional again because others rely on me, failing is not an option but i don't see any other outcome than that for my future. I've tried everyting for years and years, seen every possible doctor, spent tons of money on proven and experimental treatments, nothing bloody worked.
Give me a break for once please!
Sorry for the rant, this crash really got me down this time, i feel like such a failure.

 

[kangaSue]

Sounds like exercise induces colitis of some form. A lot of your symptoms and your response to meds can fit for Mastocytic Enterocolitis or Allergic Mastocytic Gastroenteritis and Colitis but also look into Microscopic Colitis if it hasn't already been ruled out in having IBD.

I would also suggest checking out blood flow to your bowel doing a Doppler Ultrasound of the mesentery arteries in case there is a stenotic issue although with IBD, a microvascular intestinal blood flow issue can be the problem (intestinal ischemia) and as is the case in more than 80% of those who have Ischemic Colitis. Microvascular ischemia as a chronic condition can be an elusive thing to diagnose as it can occur with causing little in the way of bowel pathology signs unless it is in an advanced state.

It may not even be able to tell a microvascular problem apart from regular IBD bowel pathology either if you have finding of lesions or mucosal damage from that. There is however, some hypothesis that these findings in IBD can result from microvascular intestinal ischemia in the first place.
https://www.aaaai.org/ask-the-expert/mastocytic-enterocolitis
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346686/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4428674/
http://microscopiccolitis.org/articles/How are mast cells associated with microscopic colitis.html

 

[Thinktank]

@kangaSue ,

It's not exercise induced colitis, colonoscopy a week ago showed a clean colon. And the pain is more in the ileum and duodenum part.

I do however share your opinion about mastocytic or allergic gastroenteritis. That absolutely proves why i anthistamines, mast cell stabilizers and leukotriene inhibitors have such a profound effect on the inflammation in my intestines. I highly suspect a mast cell disorder but the immunologist i went to last week didn't believe so because my tryptase came back normal. I tried to explain to her that in MCAS tryptase is often if not always negative, she didn't want to hear it..... time and efforts wasted.
Preferably i want a biopsy taken of the ileum, colon and duodenum to check for increased mast cells or signs of mast cell activation. The gastroenterologist didnt take any biopsies because my colon looked "clean".... sigh.

That's an interesting suggestion about the ultrasound of the mesentry arteries, but i don't think my gastro will go with it. Intestinal Ischemia is absolutely a possibility.
I must be nearly dead before they will agree to check for intestinal ischemia.

I'm in such a bad crash now, just like 5 years ago when i had to be admitted to the hospital.

 

[Thinktank]

A little update, i've been able to block the "attack" by 80% or so.
Antihistamine, boswellia (leukotriene inhibitor) and quercetin brought it down a bit.
Then i remembered propranalol (a beta inhibitor) helped me once so i tried it again, lo and behold within an hour or so the symptoms have reduced to 80% or so. First the flushing in my ears and neck left, then i felt calmer and my mind stopped racing.
I feel really down and a bit anxious now but i'm no longer spacing out like the world is going to end any moment.

Overdone exercise -> increase in inflammatory metabolites from mast cells? + an increase in adrenalin (why?).

I've told every doctor about this but nobody is listening!

 

[Sushi]

Then i remembered propranalol (a beta inhibitor) helped me once so i tried it again, lo and behold within an hour or so the symptoms have reduced to 80% or so.

I find that taking a beta blocker before exercise helps too.

 

[wigglethemouse]

've told every doctor about this but nobody is listening!

It's a shame no biopsies were taken. However given the vast area of the digestive system it can be hard to pick the right area where mast cells are increased.

You can read "Never bet against Occam" by Dr Afrin for lots of info on MCAS and details on testing.That will arm you with knowledge.

Doctors could be referred to this paper where Fig 5 and the text following it details the blood and Urine testing for MCAS along with special handling instructions.
https://www.wjgnet.com/2218-6204/full/v3/i1/1.htm

 

[Eve18]

I have all those symptoms during PEM. Except my eyes don't itch. Usually I experience PEM 24 hours after any physical activity.

 

[Runner5]

I strongly suspect an issue with insulin or glucose metabolism yes, but doctors have not taken me very serious on it. 10 years ago i was sent to an endocrinologist which did a glucose tolerance test on me because of fatigue following a meal, the result showed elevated levels. I still can't drink a can of soda or anything loaded with sugar, it sends me into a foodcoma within 20 minutes!

I have a glucosemonitor and the results always come back fine. Fasting glucose measured in lab is also always fine.

You mention Thiamine. I tried Thiamine 6 years ago and noticed an immediate effect, like it cleared my brain fog. I had to stop using it after 2 days because of an IBD-flare.

Which amino acids are you taking? Just a BCAA formula? I find it helps me too, it really gives that bit of extra energy during a workout but somehow it highly increases my metabolism! I don't want to loose too much fat because i'm already so skinny.

I suffer from IBD, many allergies & inyolerances and now possibly also MCAS. Meat is actually one of the only few things i do digest and tolerate. Dairy and vegetable proteins on the other hand....

I was very into weight training before i became ill. Lost about 25 kilo's in muscle mass. I'm skin over bone and unable to gain any weight, no matter what i eat.

I used to fall asleep within about 20 minutes of eating - super fatigue - turned out it was Gastroparesis, my stomach wasn't emptying rapidly enough. So what happens is your body thinks "food on board" releases insulin, but the food doesn't show up. It's stuck in the stomach and it's slow through the lower intestine and then that allows really pathogenic bacteria to grow and a whole world of problems. There are several bad things that get triggered all at once, and you end up very very tired.

I am plant based, but had to lower some of the fiber. (white rice instead of brown, white bread instead of whole wheat, broth, soups, beans diluted in soup or with the rice, smoothies but small sized, some fruit is okay under 1 cup). I also have IBD, so tomatoes are a no go, if I eat them I get sores through my stomach and small intestine. Citrus also. I can't eat oats, they take too long to digest -- no whole grains. Basically have to keep things pretty bland because my stomach doesn't empty as quickly as it should and I'll get sore spots. Dairy is a no go, I thought I would add in a little whey and I just ended up with a two day migraine.

A Chinese nurse told me I had a tired stomach. And I should treat it like it was tired, give it bland well boiled mushy rice in water and some boiled veggies. So far so good. I liked how she explained it.

Meat, fat, dairy, eggs make the GI slower and my GI is already very slow -- so they're off my list. (TMI -- I can't poop when I eat those things, it feels like I need to, but even when I do go it doesn't feel 'finished' common IBD type stuff but very annoying.) Too much fiber and I blow up like a balloon. I look pregnant. Fiber sometimes feels like I swallowed pine cones and it hurts all the way down, but it improves my energy -- so I think it feeds the good bacteria and they're mightily happy, but my gut is just TIRED and it needs the more gentle foods for now. I hope to gradually add in more fiber and a wider variety of food with time. Slow and steady.

So yeah, it's something I'm working on fixing and I'm getting better.

My blood work would come back a little elevated i.e. prediabetic, my liver enlarged, my heart had some damage but the doctors shrugged it all off - but I thought - okay, I have a metabolic issues, absolutely, and I have all these health problems -- it's got to be connected.

So daily I take:

L-Glutamine (gut lining)
L-Tyrosine (thyroid support, mood)
L-Theanine (mood)

and I have a protein shake after I work out, currently a Soy one as dairy refuses to be my friend although I think whey works better.

I don't really take BCAA's. I usually take an EPA /DHA, Vitamin D, B12, and Magnesium.

PPI drugs (i.e. like Prilosec), Lithium, Benedryl and many other drugs can cause gastroparesis. So can dieting. I did a nice cocktail of all those things and I think I put this evil on myself. I sometimes had the nausea classic of gastroparesis but not maybe as often as classic GP, additionally with IBD -- I was so used to feeling awful and being aware of food in my GI -- it's kinda hard to know what "normal" is after awhile.

As long as I'm avoiding too much fiber, following a 100% plant based diet albeit not a standard WFPB diet, and getting in a little exercise everyday my GI seems to be happy -- until my period hits. That absolutely mucks up my GI like nobody's business. UGH.

I also get gastritis really easily which is a stomach issue. So when I would go into my doc and I had stomach issues, upper GI, lower GI and fatigue -- they didn't know what in the heck to do with all that.

The so-called, "carnivore" diet is being used to treat this whole amalgam of stomach / GI issues at the moment by a few people - I'm following along to see what happens with that. You can probably type that into Google, Jeff Rogan did a couple of interviews with people who did the Carnivore thing, one man and his daughter only eat beef and salt.

This condition is so miserable that people have done some really weird stuff to free themselves from it and it's kinda a big war online at the moment and has really blown up since Rogan had a few interviews with people like Shawn Baker and popular Vegans took on the issue like GogiMan and Vegetable Police. I've been watching this conflaguration with interest -- mostly because I always felt really alone with my GI problems and my fatigue. I felt like a freak. Turns out it's not that unusual or rare. Wow. I will watch how that resolves and keep that "only eat beef" in my back pocket if I ever get to the next level of desperation. I really don't like eating critters unless it's a fish, fish have it coming, but I normally don't eat them either.

This is going on far too long....

Hey Good Luck to you - I hope you found something I said useful if it wasn't tl;dr *Cheers*

 

[kangaSue]

It's not exercise induced colitis, colonoscopy a week ago showed a clean colon. And the pain is more in the ileum and duodenum part.

A common misconception with GI's I'm afraid and it can still be a case of chronic intestinal ischemia.

Because of the short periods of ischemia involved, there is often no pathology found in the colon to indicate you might have this as the mucosa layer is in a constant state of repair and can withstand something like 10 hours or more of a prolonged ischemia/reperfusion event before it causes any obvious signs of damage and you'd need to be an endurance athlete to achieve that from exercise.

Depending on which blood supply source (mesentery artery) to the bowel is involved, the part of the intestine(s) affected can be anywhere from the duodenum to the transverse colon.

Propranolol, in reducing cardiac output, can make intestinal ischemia worse though so keep this in mind should you happen to get a worsening of abdominal pain.