My PEM seems to be different from others

[Xhale19991]

I wanted to make a thread on this and see if anyone else can relate to me.

I don't get the typical PEM symptoms most people talk about. When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away. I don't notice any symptoms that become worse hours/days after exercising like most describe with PEM. Any idea as to what this may be?

 

[minkeygirl]

IMO that isn't PEM. PEM doesn't go away in 30 minutes. I'd kill for mine to be that short lived.

 

[Xhale19991]

Hmmm, I wonder what it could be. Maybe I dont have CFS and it is something else?

 

[Gondwanaland]

@Xhale19991 my husband has symptoms similar to yours and I think he is in deep troubles with ATP generation. He recovers quickly but it's useless since he can't tolerate physical exertion in the first place.

 

[Xhale19991]

Is there a name for the condition?

Is what I'm describing common in CFS patients? I know that PEM usually lasts much longer than what I experience, but are the symptoms I get right upon exercising normal in CFS?

 

[pemone]

I wanted to make a thread on this and see if anyone else can relate to me.

I don't get the typical PEM symptoms most people talk about. When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away. I don't notice any symptoms that become worse hours/days after exercising like most describe with PEM. Any idea as to what this may be?

This almost sounds like an environmental sensitivity, either chemical or mold. Can you try doing a similar level of activity in totally different locations - some inside and some outside - and see if there are differences?

This is definitely NOT the classic PEM that a CFS sufferer would have. PEM is most acute in the days after exercise or exertion.

 

[justy]

Is there a name for the condition?

Is what I'm describing common in CFS patients? I know that PEM usually lasts much longer than what I experience, but are the symptoms I get right upon exercising normal in CFS?

I have immediate malaise that lessens within about 30 minutes of laying down/resting. This immediate exercise intolerance is common in PWME. As for delayed PEM - I think it depends on your level of functioning in general. If you are mildly affected then I believe this is possible.

Now I am severely affected any over activity causes immediate malaise, but sustained over activity will cause classic 3 day PEM as well. When more mildly affected I didn't get the delayed so much.

Have you had any in depth testing to see what is at the root of your M.E/CFS? How functional are you generally?

 

[Valentijn]

When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away.

It does sound like exercise intolerance, but not PEM, which is just one very specific type of exercise intolerance.

It might be from orthostatic intolerance. Have you tried exercising when laying down instead? It also might help to check your heart rate and/or blood pressure when this is happening.

 

[alex3619]

Now I am severely affected any over activity causes immediate malaise, but sustained over activity will cause classic 3 day PEM as well.

I have had very brief PEM at some stages of my illness (a day), but it can last weeks, not just days. In the mid to late 90s it lasted at least two weeks.

This immediate exercise intolerance is common in PWME

Exercise intolerance is a hallmark of many diseases, its not diagnostic. It also occurs in CFS and ME, but often not in the milder cases.

If exercise intolerance is the primary (without PEM) symptom then there may be many causes and it might pay to keep looking. I am not sure it rules out mild ME though.

It might very well be autonomic though - autonomic disease is much more common than ME. I would also consider investigating glycogen storage diseases.

If these other symptoms occur without exercise then intolerance or even allergy may be involved.

 

[PNR2008]

I just got up to feed and let out my dog and cat. While I'm waiting I also take some sheets and towels out of the dryer to fold. Even though I am sitting down my arms and legs are so weakened that I fear fainting and the weakness really hurts.

It gets much better after I lie down with legs propped up and pain reliever popped down but it will last a few hours. I don't consider this PEM but OI, specifically POTS even though my BP readings are OK. It usually passes in about 3-5 hrs. Yet I am just as disabled for 3-5 hrs. as I am when a 3-5 day PEM strikes.

 

[pemone]

I wanted to make a thread on this and see if anyone else can relate to me.

I don't get the typical PEM symptoms most people talk about. When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away. I don't notice any symptoms that become worse hours/days after exercising like most describe with PEM. Any idea as to what this may be?

It certainly is not PEM. It might be an environmental reaction. It could be an allergic response. It could be some kind of mold or other toxin.

Have you tested this by going to completely different locations to do the exercise? As one of those test locations, can you go to a seashore and try to exercise barefoot with connection to the water? Try to stay really grounded, and get the benefit of the negative ions from the water. If you react equally badly in such a pristine electrical and grounded environment, then the problem is less likely to be an environment contaminant where you live.

Are you in a big city? Do you have a lot of industrial pollution in your environment?

 

[pemone]

@Xhale19991 my husband has symptoms similar to yours and I think he is in deep troubles with ATP generation. He recovers quickly but it's useless since he can't tolerate physical exertion in the first place.

If you have ATP generation problems, your electron transport chain is impaired. You would have the classic CFS PEM symptoms in this case. You would be stuck in glycolysis.

How can you say he recovers quickly, but is not able to exercise in the first place? It sounds like he is already in PEM before he started exercising? But anyone with true CFS who is too exhausted to exercise would never recover quickly. In fact exercise would send them into total collapse. What exactly do you mean by he cannot tolerate physical exertion? Is he winded? Too large to move without pain?

I think you can measure that a few ways. Dr Shallenberger in Nevada does a exercise bike test that can tell you at exactly what level of exercise you go into glycolysis. If he enters glycolysis below 130 beats per minute it's pretty likely entering glycolysis at low levels of exertion.

I'll post on this soon, but I contacted a famous researcher who gave me a way to calculate the NAD+/NADH ratio using metabolites of lactate and pyruvate, plugged into a formula. You could calculate his NAD+/NADH ratio before and after exercise and that would tell you a lot about his energy state with minimal expense. Most classic CFS people have broken electron transport chains, which in turn impairs their ability to convert NADH from the Krebs cycle into NAD+. They end up downregulating Krebs cycle because of the NADH backlog.

 

[Xhale19991]

Thanks for the responses.

I have tried working out in different environments and have not noticed any difference. I highly doubt what I'm going through is an issue with environmental toxins.

Would a stress test perhaps help determine what is wrong with me? I've had so many tests done and still have no answers.

Another thing I've noticed is that I get all the terrible exercise symptoms whenever I drink caffeine. Not sure if this would indicate anything.....

 

[pemone]

Thanks for the responses.

I have tried working out in different environments and have not noticed any difference. I highly doubt what I'm going through is an issue with environmental toxins.

Would a stress test perhaps help determine what is wrong with me? I've had so many tests done and still have no answers.

Another thing I've noticed is that I get all the terrible exercise symptoms whenever I drink caffeine. Not sure if this would indicate anything.....

If you can check in with me in a month, I am still working out the details of who can provide the testing, but I think I have a simple way to do some exclusion diagnosis for your case. What I would propose is that you do a simple challenge test as follows:

1) Do not exercise until you feet rested.

2) Next morning, after fasting, get a RBC or blood (not plasma) measurement of pyruvate and lactate on rising. We'll use that to calculate an NAD+/NADH ratio. That will show if you are in an aerobically compromised state at the start of the test.

3) Run for however long is required to produce extreme symptoms.

4) IMMEDIATELY at the end of exercise, and at the beginning of your 30 minutes of symptoms, get another lactate and pyruvate draw, being careful to have the lab label each sample with a name like "Before Exercise" "After Exercise" etc.

My prediction in advance is that you will have fairly normal NAD+/NADH ratios before and after exercise. That would strongly suggest you do not have impairment of your electron transport chain (otherwise you would not be able to maintain the NAD+ ratio after exercise).

A stress test would help if it were done at the right lab. Dr Shallenberger in Carson City, Nevada has a test where he can show at what level you enter glycolysis. A CFS sufferer would go into full on glycolysis at a low level of exertion. Unfortunately, the more interesting thing is a CFS sufferer stays in glycolysis AFTER the end of exercise, and what would be really useful is measuring that in the same physiology lab in days after exercise finishes. No one does that.

Do you have any ability to go to a seashore and run barefoot along the tide break and see if there are any changes in behavior of the symptoms? That environment specifically gives you lots of negative ions and also gives you electrical grounding, which does have immediate metabolic effects on your cells. If you get the same symptoms in such an environment, we can probably rule out environment influences. I'm assuming you don't live in an industrial city of India where the seashore might be even more toxic than the city that pollutes it. If you get much less severe symptoms in that environment, then we have important clues that can be used for further testing to isolate cause.

 

[taniaaust1]

If you have ATP generation problems, your electron transport chain is impaired. You would have the classic CFS PEM symptoms in this case. You would be stuck in glycolysis.

How can you say he recovers quickly, but is not able to exercise in the first place? It sounds like he is already in PEM before he started exercising? But anyone with true CFS who is too exhausted to exercise would never recover quickly. In fact exercise would send them into total collapse. What exactly do you mean by he cannot tolerate physical exertion? Is he winded? Too large to move without pain? .

Im like the other described her husband as being thou I do get PEM but its not easy for me to go into due to my inability to exercise due to OI. It isnt a case that I start out with PEM to start with but a case of my OI (in my case 5 different kinds of dysautonomia.. all the ones Dr David Bell mentions in us) is so severe that it kicks in very fast whenever I try to do anything when upright.

I can recover from the OI quite fast thou with some laying but once again (as long as I didnt actually collapse, in which case I then need a drip to recover and a collapse can knock my ME about for days), but as soon as I try to exercise, Im screwed up (a 5min aerobic class could have me unconscious due to the OI, I tried a dance class once and that was all I lasted till I was on floor).

I hope this has helped you to understand how those who have severe OI may not be able to even get themselves into much PEM.

 

[taniaaust1]

I wanted to make a thread on this and see if anyone else can relate to me.

I don't get the typical PEM symptoms most people talk about. When exercising I notice negative side effects immediately. My body becomes very cold and I break out in a cold sweat, nausea, skin becomes clammy, dizziness, hearing loss, and begin to feel pretty terrible for about 30 minutes. After I stop working out however, these all go away. I don't notice any symptoms that become worse hours/days after exercising like most describe with PEM. Any idea as to what this may be?

It doesnt sound like ME to me, there are other condtions which cause exercise intollerance. Your hearing loss is an interesting symptom, when trying to work out what is causing your trouble I suggest looking at exercise intollerance illnesses which cause that as that's not a common symptom.

I suggest to ask your doctor to refer you for a tilt table test to try to rule out orthostatic intollerance issues like forms of dysautonomia (im not sure if those can affect hearing too or not). One thing which causes exercise intollerance and hearing loss can be a symptom too, is mitochrondrial disorders.

Your symptoms of feeling cold sweat, nausea, clamming skin and dizziness sound like shock symptoms (do people going into shock sometimes get hearing loss??)... so I also wonder if you could have some medical issue which causes exercise intollerance and shock. Mast cell disorders can cause both those things eg systemic mastocyctosis. (exercise I believe can also trigger off an attack in some).

I think you need more tests done to work out what you have.

 

[taniaaust1]

Another thing I've noticed is that I get all the terrible exercise symptoms whenever I drink caffeine. Not sure if this would indicate anything.....

Being affected negatively by caffeine can be caused by OI issues like types of dysautonomia eg caffeine can be an issue in some POTS (postural orthostatic tachycardia syndrome) people. For myself with my POTS, caffeine is quite bad.

 

[pemone]

Im like the other described her husband as being thou I do get PEM but its not easy for me to go into due to my inability to exercise due to OI. It isnt a case that I start out with PEM to start with but a case of my OI (in my case 5 different kinds of dysautonomia.. all the ones Dr David Bell mentions in us) is so severe that it kicks in very fast whenever I try to do anything when upright.

Okay, but you can solve that problem by simply buying a recumbent bike. There are models that go right down to the floor and you can sit in a way that no amount of dizziness would ever prevent you from using the bike.

 

[PennyIA]

It does sound like exercise intolerance - I have heard of some people who have this and when they keep pushing themselves starting showing signs of allergic reaction. I don't think they've found the cause - but they basically claim to be allergic to exertion - and have theories floating around thinking that there might be something in the proteins/reactions/cycle that while exerting they are releasing something internally that causes the allergic reaction.

I don't really experience this... although I do reach a stage after being physically active where my body becomes cement and the brain is repeatedly screaming at me to go lay down... and doing so helps with recovery. I've found that keeping my exertion time-frames really low (like 5-10 minutes up maximum and a minimum of 90 minutes reclined or down) helps keep me from hitting that wall. I don't think that sounds like what you are hitting though.

 

[Xhale19991]

Im like the other described her husband as being thou I do get PEM but its not easy for me to go into due to my inability to exercise due to OI. It isnt a case that I start out with PEM to start with but a case of my OI (in my case 5 different kinds of dysautonomia.. all the ones Dr David Bell mentions in us) is so severe that it kicks in very fast whenever I try to do anything when upright.

I can recover from the OI quite fast thou with some laying but once again (as long as I didnt actually collapse, in which case I then need a drip to recover and a collapse can knock my ME about for days), but as soon as I try to exercise, Im screwed up (a 5min aerobic class could have me unconscious due to the OI, I tried a dance class once and that was all I lasted till I was on floor).

I hope this has helped you to understand how those who have severe OI may not be able to even get themselves into much PEM.

Thanks.

I think this is the case with me.