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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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can it still be cfs/me if i can do sports

K

kjes22500

Messages
34
wabi-sabi said:
That's an impressive amount any way you slice it!

What is your fatigability vs recovery time like?
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I dont really have fatigue muscle Wise
I feel even better if i workout than if i dont.

My symptoms are mainly cognitive,
It feels like im getting poisoned by my own blood like if i heavily drank but way less fun.
Thats why i was asking if it s still possible, cause im Starring to suspect its more like a d-lactic acidosis or something like that
 
percyval577

percyval577

nucleus caudatus et al
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1,302
Location
Ik waak up
I also could do sports when I felt very bad, not all sports though. Almost no problem was riding bike intensely all the day up to 250 km. But going for walk was limited to 2 hours, and my beloved 4 hours caused a few days elevation of pain. After riding bike I could not sleep, and the typical good feeling was missing.

Paradoxically I got worse in these terms after an overall improvement had started. One year I managed to ride bike for two times, and back then beer helped generally. So on a longer tour I even drank beer for being able to continue.

Before I got ill I used to do push ups and the likes, and/or yoga, quite on a regular basis. This though is still not possible as ever after falling ill.

The CCC require mental or physical symptoms worsening after exertion. So I have been more on the mental side, but both sides may well be intertwined (for sure in my experience). This leads to my opinion, that it should be a neurological disease, or a immuno-neurological one.
 
percyval577

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
Shanti1 said:
Yup, I could exercise at first and didn't recognize the early warning signs of never being able to repeat my performance level on a consecutive day, not showing improvement in my exercise stamina in general,
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Strawberry said:
I definitely used to be able to do what I wanted in the early years of this disease. I had zero idea that my active lifestyle was the reason for my chronic sick. I actually thought I would get better forcing myself to be very active. Until it destroyed me.
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Yes, I want to agree: My long, intensive riding tours had been limited to two times a week. Three times slowly announced a profound worsening, so let it. Apart from some training effect over the course of weeks beginning with spring, there was no conditioning possible. Normal thinking is in regard of this illness dangerous. (Stay alert!)
 
W

Wishful

Senior Member
Messages
5,740
Location
Alberta
wabi-sabi said:
I mean people with ME/CFS don't feel better after working out.
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That statement is not true. It might be true for 80% or 95% or whatever of PWME, but not 100.00%. kjes22500 and Percyval577 and myself are three examples of PWME who doesn't suffer from the common physical limitations or the aftereffects of physical exertion. There have been others reporting here with similar stories. I don't know what the percentage is, but it seems enough to prove that the physical problems are not an essential part of ME; it's just very common.
 
5vforest

5vforest

Senior Member
Messages
273
Wishful said:
That statement is not true. It might be true for 80% or 95% or whatever of PWME, but not 100.00%. kjes22500 and Percyval577 and myself are three examples of PWME who doesn't suffer from the common physical limitations or the aftereffects of physical exertion. There have been others reporting here with similar stories. I don't know what the percentage is, but it seems enough to prove that the physical problems are not an essential part of ME; it's just very common.
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I mean, I would be included as part of this group, but this is the reason I am careful to say that I don’t technically have ME/CFS.
 
W

Wishful

Senior Member
Messages
5,740
Location
Alberta
wabi-sabi said:
not even cognitive ones?
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Physically-induced PEM did increase my cognitive symptoms, but once I blocked the PEM, even strenuous physical exertion didn't affect my cognitive symptoms. I think my physically-induced PEM was through the pathway of my t-cells, and cumin blocked that pathway. I still had cognitive-induced PEM while the cumin was blocking my physically-induced PEM, but when I stopped having P-I-PEM even without cumin, I also no longer had C-I-PEM. I still have cognitive problems (especially brainfog), and the severity varies, but now it isn't affected by physical or cognitive exertion.
 
W

Wishful

Senior Member
Messages
5,740
Location
Alberta
wabi-sabi said:
What do you find affects it?
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Proline is one thing that definitely makes my brainfog worse, and seems to do some other cognitive disruption. There are probably some others, but I can't think of them right now probably because I've been avoiding them for a long time. Lettuce (surprised me) seemed to make physical and cognitive symptoms worse. Then there are days when I feel brainfogged but can't figure out what triggered it.
 
Reading_Steiner

Reading_Steiner

Senior Member
Messages
245
Hmm, I lost endorphin response i.e. mood change in response to exercise, that was in the first month, so I think that might be a telltale sign to look for. I lost about 75% of stamina / fitness, and I had strange side effects after exertion, nausea etc, sitting on the sofa all day. After about 7 months I struggled to even cycle a couple of miles, walks got shorter, but there was a sudden point where things changed, found it hard to even walk down the street, intense pain in the upper neck, never had much stamina since then but most of the worst symptoms have settled down and are predictable.
 
Insomniac

Insomniac

Messages
763
Location
Israel
kjes22500 said:
i can still do some exercices, maybe 300-500 push ups in a day and i feel better right after it, while i read that cfs/me patients have exerices intolerance.

But i seems to have pretty much all other symptoms and doctor think it's cfs, so what is your opinion?
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I couldn't even do that when healthy. I don't think you have it.
 
M

Mouse girl

Senior Member
Messages
581
um straight up no, you don't have it. I'm no doctor but in order to have it you must have PEM. Meaning you could do that insane amount of push ups but later, even 2 days later, you would want to die and get very ill. Even when i was very mild as a teen and young adult, i could exercise but i would end up getting sick. Or i would be fine for a long time and then get really run down with all kinds of the classic symptoms. Only looking back and seeing some old doc notes did i realize that i had a very mild case of CFS/ME back then. I thought nothing of it as it was just my norm. Then, i got very ill and knew something was very very wrong with me. Then the cognitive symptoms hit.

There are a gazillion diseases that cause fatigue. You have something else in my non doctor opinion. You are sick, but keep searching for answers with docs. That's my advice. PEM is the classic symptom and PEM can come from any and all activity, even sedentary and will build, so you may get away with more activity than normal and think you are doing better but keep going and then get set back. It's a super tricky illness.

I'ld say, congrats, you have something else going on and hopefully, you can find a way out and be well!
 
M

Mouse girl

Senior Member
Messages
581
Oh duh, to myself. Maybe you have fibro? Forgot about that. It's so similar to CFS but people feel better with exercise. Is congnition and poison feeling the only symptoms? That would be different. Fibro classic symptom is pain but has a many other symptoms too, like cfs/me. Fibro alone can be much more managable than ME, so that would be better too. Just trying to put a positive spin on it.

I had fibro when i was young and then i had the classic CFS/ME kick in.
 
K

kjes22500

Messages
34
Mouse girl said:
um straight up no, you don't have it. I'm no doctor but in order to have it you must have PEM. Meaning you could do that insane amount of push ups but later, even 2 days later, you would want to die and get very ill. Even when i was very mild as a teen and young adult, i could exercise but i would end up getting sick. Or i would be fine for a long time and then get really run down with all kinds of the classic symptoms. Only looking back and seeing some old doc notes did i realize that i had a very mild case of CFS/ME back then. I thought nothing of it as it was just my norm. Then, i got very ill and knew something was very very wrong with me. Then the cognitive symptoms hit.

There are a gazillion diseases that cause fatigue. You have something else in my non doctor opinion. You are sick, but keep searching for answers with docs. That's my advice. PEM is the classic symptom and PEM can come from any and all activity, even sedentary and will build, so you may get away with more activity than normal and think you are doing better but keep going and then get set back. It's a super tricky illness.

I'ld say, congrats, you have something else going on and hopefully, you can find a way out and be well!
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you probably right,

i'm starting to suspect it's more a sibo/dysbiosis issue due to antibiotics and probiotics overuse causing me d-lactic acidosis
that would also explain why antibiotics were efficient at treating the symptoms at first
 
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