Does post exertional malaise ever get better with training?

[MNC]

So I started walking every day more than one month ago and my post exertional malaise seems to have improved in distance. I have got to walk up to 12 km (7.5 miles) at very high speed (6.5 km/h) and I didn't get the dreadful malaise.

However, this is just for walking. The other day I went to throw the basketball, just some throws without really running or playing, just some jumping and some short runs to the basket, and after around 30 minutes I got the symptoms so bad that I had to go to Emergencies (electrocardiogram ok) with all the same symptoms I've had for 25 years when exercising... feeling of heart angina, can't breath, nausea, dizziness, flu-like feeling, pallor, ...

And today it happened again when I went to the gym to exercise my muscles. Indeed I have improved after one month walking and some short trainings at the gym, but went a bit far and again the symptoms are there.

And it is very scary because it really feels like heart disease, angina, like I'm going to die for many many hours or even days.

So, my doubt is if it gets any better if I keep training but stop when I am forcing the muscles and start feeling the symptoms. My feeling is that it can improve a little bit, but still the muscles and aerobic exercise is impossible it's a gone function in my body for anything that means a bit heavy muscle use and oxygen demand.

 

[Mary]

@MNC - I'm not sure what to say. This doesn't sound like PEM to me, when you're able to walk 7.5 miles at high speed with no problem. Usually PEM is delayed onset, often 24 to 48 hours later after the exertion. For me it usually hits 20 hours later, and there is no way I could walk even a mile. And PEM does not improve with training - it's not deconditioning, which does improve with training. PEM seems to be due to a metabolic problem which is not resolved by exercise.

What you have sounds a little similar to exercise-induced asthma - see http://www.webmd.com/asthma/guide/exercise-induced-asthma

Has anyone ever checked you for this? It's just so unusual for someone with CFS to be able to walk like you do with no problem, but then a have problem with more intense exercise. That just sounds like a totally different problem to me than CFS.

 

[MNC]

@MNC - I'm not sure what to say. This doesn't sound like PEM to me, when you're able to walk 7.5 miles at high speed with no problem. Usually PEM is delayed onset, often 24 to 48 hours later after the exertion. For me it usually hits 20 hours later, and there is no way I could walk even a mile. And PEM does not improve with training - it's not deconditioning, which does improve with training. PEM seems to be due to a metabolic problem which is not resolved by exercise.

What you have sounds a little similar to exercise-induced asthma - see http://www.webmd.com/asthma/guide/exercise-induced-asthma

Has anyone ever checked you for this? It's just so unusual for someone with CFS to be able to walk like you do with no problem, but then a have problem with more intense exercise. That just sounds like a totally different problem to me than CFS.

Thank you Mary. Yes, I have been tested for asthma and also in the "effort test" (?) (walking in the machine with the cables connected to your chest). I have been to lots of specialists for the heart, lungs or allergy and they never found anything important, but I had a very positive tilt test where I almost died with a heart arrest and difficult reanimation.

I know it is weird and not exactly PEM but I get those dreadful symptoms after efforts or other triggers. For example once in Denmark I had a sauna and then a cold water barrel and I felt like dying for 3 days. (This was 20 years ago when I still hadn't even heard of CFS).

To me it looks like heart disease, angina or so, but lots of heart doctors say I don't have it. Last week I left the office of this cardiologist after fighting hard with him because he was very rude when I asked for deeper tests. If many football players die on the pitch after so many tests they pass, they can obviously be missing something with me as this happens from my teens, those awful symptoms when playing sports.

As for the long distance walks, this is very unique in my illness history. I stopped smoking a year ago, started a very healthy diet and started walking very short distances, increasing very slowly and gradually with much care and patience.

Most of all, the weather has been amazingly wonderful and mild here in Madrid for one whole month. It is usually cold 8 months and then very hot 4 months, but this year we are having a spring for the first time in my life. And with perfect temperature I can really walk much more. If it is cold or hot, I just can't. Between 25 and 30º I feel much better.

For some reason I always have very low body temperature (35º in the morning, 35.7º during the day) and heat feels good.

Thanks again and best regards.

 

[SOC]

@MNC, that sounds a lot more like some form of dysautonomia than PEM. You say you had a very positive TTT, which is a clear sign of OI. I assume they gave you some treatment given how badly you failed the TTT (heart arrest and difficult reanimation). Given the symptoms you are describing, I suggest that your OI treatment is still inadequate. You should consult with your doctor to improve your treatment plan.

The fact that walking helps, but exercise that puts your arms above the level of heart gives you trouble is typical of OI. As is the fact that you had a problem with sauna. Low body temp is also common in dysautonomia.

I would say that no, PEM doesn't get better with training, but OI can be greatly improved with the right exercise, which might be what's happening with you.

 

[MNC]

@MNC, that sounds a lot more like some form of dysautonomia than PEM. You say you had a very positive TTT, which is a clear sign of OI. I assume they gave you some treatment given how badly you failed the TTT (heart arrest and difficult reanimation). Given the symptoms you are describing, I suggest that your OI treatment is still inadequate. You should consult with your doctor to improve your treatment plan.

The fact that walking helps, but exercise that puts your arms above the level of heart gives you trouble is typical of OI. As is the fact that you had a problem with sauna. Low body temp is also common in dysautonomia.

I would say that no, PEM doesn't get better with training, but OI can be greatly improved with the right exercise, which might be what's happening with you.

That makes so much sense SOC. But the question is that I had the TTT in 2007 and since that diagnosis I have gone to lots of doctors with the medical report and NO ONE has said they could help me or that that is even a disease.

Cardiologists, Neurologists, Internists... many of each, and usually they say that dysautonomia is nothing serious, that it will pass, that I should go to the psychologist or psychiatrist... So I have NEVER been treated after 7 years of the diagnosis (where I could have perfectly died, the description of what happened to me at the TTT is horrendous).

I really ended up losing my mind with this and losing my forces to keep going from one doctor to another if nobody takes you seriously or nobody knows how to treat the condition.

Should I try again? With what type of specialist and what medications?

On the next 17th of June I'm meeting an Internist who thinks I may have Mastocytosis (MCAS) and gave me the medication recommended by Dr.Afrin, but I started taking it and stopped it for feeling unwell. He's young and ery nice and helpful but I know for sure he doesn't know how to treat dysautonomia, specially as severe as mine.

Thanks a lot again.

 

[SOC]

But the question is that I had the TTT in 2007 and since that diagnosis I have gone to lots of doctors with the medical report and NO ONE has said they could help me or that that is even a disease.

Your heart stops during the test and no one thinks that's a problem?

Should I try again? With what type of specialist and what medications?

I would try again. That was a severe reaction to the test and you clearly still have symptoms. The question really is why all those doctors don't think your test results are a problem? Why do the test if a reaction that severe does not warrant treatment?

If I were in your situation, I'd look for an electrophysiologist or a dysautonomia specialist (they're hard to find). There are a number of medications that can help with OI, but which ones are right for you depends on the details of your condition. There are different types of OI with different needs.

There is a LOT of information in our Autonomic, Cardiovascular, and Respiratory subforum. I suggest you start reading there for more ideas about what OI is and how to deal with it.

 

[MNC]

Your heart stops during the test and no one thinks that's a problem?


I would try again. That was a severe reaction to the test and you clearly still have symptoms. The question really is why all those doctors don't think your test results are a problem? Why do the test if a reaction that severe does not warrant treatment?

If I were in your situation, I'd look for an electrophysiologist or a dysautonomia specialist (they're hard to find). There are a number of medications that can help with OI, but which ones are right for you depends on the details of your condition. There are different types of OI with different needs.

There is a LOT of information in our Autonomic, Cardiovascular, and Respiratory subforum. I suggest you start reading there for more ideas about what OI is and how to deal with it.

That is what drives you insane and you end up losing your mind with this illness. Not only my heart stopped during the TTT but the symptoms were gigantic, scandalous, horrendous, from minute 9 of standing up, and the guy was saying I was having " a panic attack " and that I had to endure it while I screamed so loud to get me out of there that the hospital walls could have collapsed.

Even more ironic than that is that after the TTT I was speaking with the people of the dysautonomia foundation in América. I was asking them if they knew a specialist in dysautonomia in Spain (I'm from Madrid, 3rd largest european city) and they recommended me to see... the same doctor who did the TTT to me (the one who said he only diagnosed with TTTs but didnt treat it and the same guy who said I had "a panic attack").

So I looked for someone under the stones and didn't find anyone. I spoke on the phone with one in France, Stockholm, London and Vienna. They all said they could treat me if I moved there. But I can't go anywhere on my own.

It's been such a looooooooooong process and sooooo many visits to so many doctors and so many attempts of so many things that I end up forgetting. But this has refreshed my mind and I can remember why I have never been treated for OI or dysautonomia or whatever I have there.

Pure medical incompetence and a corrupt medical system in a western country where doctors don't care about patients but only about their money. The usual.

 

[Mary]

@MNC - I'm really sorry for all you've had to go through at the hands of the medical profession. The "good" news is, you have lots of company on this board (unfortunately! ) Few of us have had any effective treatment from mainstream medicine and I think a majority of us have been met with skepticism and sometimes outright scorn by doctors - it's very demoralizing, to say the least. That's why we're here, learning from each other. Most of the things that have helped me I've tried on my own after reading about them (often here).

There are some good doctors out there but they are few and very far between. However, you may be able to find one through this board - you might do a post about that, someone may have a recommendation for someone in your part of the world.

@SOC gave you some good advice and a very good link for information on OI.

One of these days things will improve (I hope! )

 

[lansbergen]

@MNC Being practical, do the things that do not cause problems and do not do things that cause problems, If walking is okay keep doing that.