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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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I'm going on a mission! wish me luck

herpesbaby

herpesbaby

Senior Member
Messages
180
KME said:
@notmyself, I see this is not the first time that you have tested yourself with intensive exercise. You described doing the same here: http://forums.phoenixrising.me/index.php?threads/final-conclusions.50037/ Your conclusion at that time was that you do not have CFS.


Then you posted another thread describing your improvements, including extensive intensive exercise: http://forums.phoenixrising.me/index.php?threads/back-after-few-months.53066/


I understand that it is very difficult when you are unwell and you don’t know exactly what’s happening, who to trust or what to believe. But please bear in mind that this is a community of people with ME/CFS who are, generally, made very sick by exercise at much lower levels than you describe, and who have lost too many to suicide. So when you post about a “suicide mission” by “exercise”, a lot of people get very concerned about you. Since you have done intensive exercise, including at least one 5k and one 10k race in the past three months, as per your post here http://forums.phoenixrising.me/index.php?threads/back-after-few-months.53066/, characterising your experiment today as a suicide mission was dramatic.


People on here are very understanding when people are not sure if they have ME/CFS or not, and I see from this thread that you’ve had some good advice already about how to distinguish between anxiety and ME/CFS http://forums.phoenixrising.me/inde...hem-its-not-all-in-my-head.49984/#post-824558 People with ME/CFS are also very keen to help others not make the mistakes they made or that they’ve seen others make with exercise.


If there is any chance that you have ME/CFS, it is extremely unwise to keep conducting these dramatic experiments. The risk is far too high. I think it would be helpful to flag very clearly that you do not know whether you have ME/CFS or not at the beginning of a post like this. I hope your health improves.
Click to expand...

Good investigation that makes me think that origibal poster would benefit from psychiatric evaluation
 
Nielk

Nielk

Senior Member
Messages
6,970
I have just finished reading this thread and advise to change the title of the thread.

This is not a situation of someone trying to commit suicide and many of us get emotionally affected trying to read and help these type of posts.
 
notmyself

notmyself

Senior Member
Messages
364
Nielk said:
I have just finished reading this thread and advise to change the title of the thread.

This is not a situation of someone trying to commit suicide and many of us get emotionally affected trying to read and help these type of posts.
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was more like anecdotly..suicide mission is a used saying ,when you undergo something risky..but i'm goona change the name :) sorry if i create problems to others,that's not my intent
 
notmyself

notmyself

Senior Member
Messages
364
KME said:
@notmyself, I see this is not the first time that you have tested yourself with intensive exercise. You described doing the same here: http://forums.phoenixrising.me/index.php?threads/final-conclusions.50037/ Your conclusion at that time was that you do not have CFS.


Then you posted another thread describing your improvements, including extensive intensive exercise: http://forums.phoenixrising.me/index.php?threads/back-after-few-months.53066/


I understand that it is very difficult when you are unwell and you don’t know exactly what’s happening, who to trust or what to believe. But please bear in mind that this is a community of people with ME/CFS who are, generally, made very sick by exercise at much lower levels than you describe, and who have lost too many to suicide. So when you post about a “suicide mission” by “exercise”, a lot of people get very concerned about you. Since you have done intensive exercise, including at least one 5k and one 10k race in the past three months, as per your post here http://forums.phoenixrising.me/index.php?threads/back-after-few-months.53066/, characterising your experiment today as a suicide mission was dramatic.


People on here are very understanding when people are not sure if they have ME/CFS or not, and I see from this thread that you’ve had some good advice already about how to distinguish between anxiety and ME/CFS http://forums.phoenixrising.me/inde...hem-its-not-all-in-my-head.49984/#post-824558 People with ME/CFS are also very keen to help others not make the mistakes they made or that they’ve seen others make with exercise.


If there is any chance that you have ME/CFS, it is extremely unwise to keep conducting these dramatic experiments. The risk is far too high. I think it would be helpful to flag very clearly that you do not know whether you have ME/CFS or not at the beginning of a post like this. I hope your health improves.
Click to expand...


I know,you are right,i overreact, and put others under unnecessary stress,i am not used to strangers actually care about people they don't know,at least not in the jungle i grow up..but i guess people who know what suffering really is are more sensitive to other people suffering aswell.

.i will stop being a drama queen, this is not who i am.my struggle should not affect others,is already afecting my family and friends enough..I don't know if i have me/cfs or not,but this is not the job on anyone on this forum to find out.only time will tell, even if my problems are not caused by cfs,running till the point of trowing up will not help me,also the desperation of finding the cause..maybe it's a combination on more factors..rest,good food ,and a more relaxed mind will help my health regardless of what is causing me troubles..I am done being pathetic!!
 
Marky90

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Yeah though I would not call it reckless.. In the group of people diagnosed with ME/CFS the response to PEM varies hugely. Some gets PEM from major, or minor endeavors. Some usually dont experience much variance, but then from nowhere do gets much worse from something they would not get worse from before. I would say anyhow, if you have it, its best to listen to your body, and be careful. You could possibly lose more of you low functioning, even if that appears impossible.
 
JaimeS

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
This:

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And this!

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Pen2

Pen2

Support, Good Medicine.
Messages
391
Location
Maryland, US
@notmyself , sounds like you got alot of good advice from people here. Take it and remember you seem in better shape than most of us so that's a good sign! You can recover if you take care of yourself.

I see you have tested yourself before. I went a long time pushing myself to keep working, 15yrs pushing, my body finally just gave out, I knew I couldn't do my job anymore. Now I am mostly house bound not bedridden like many who have posted to you.

I know now that going out is going to leave me sick. Sometimes I have to and it's actually scary. Even just a shower, or doing the dishes....simple things including reading and writing on here.... most of us can only come on PR every now and then.

Doesn't sound like you're there. Good news!
 
notmyself

notmyself

Senior Member
Messages
364
Jesse2233 said:
Hey buddy, how're you feeling after the run?
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Hi, thank for asking !..I'm happy to say i don't have pem! My symptoms didin't worsen after this,at least not till now.I actually feel a little better.In my prime health ,i could't run half this distance..so i guess my continous cycle of experiments actually improve my cardio vascular system..This make me feel that i probably don t have cfs and anyway i'm done experimanting,testing my body and only harming myself.Diet and quiting smoking are the next goals
 
notmyself

notmyself

Senior Member
Messages
364
hey guys ..Just a feedback, i should have listen to you.But at least now i know where i'm standing. After 2 days from the run in wich i feel ok and totally relaxed,i wake up after two hours from sleep twiching all over and shaking, i could barelly walk for 2 days,feeling nausea,total lack of apetite,diziness, my spine was stiffer than ever..i could't stand any sounds ..It all being much worse.I got the PEM i was searching for.I have it before,just try to ignore it cause was not so severe like this one,and i always tried to find another explanition for the symptoms.I'm not in denial anymore, i have this curse of disease.. So i'm with you brothers and sisters :))

There is some relief in the fact that at least now i am sure is this..and instead of hoping to not have it,i hope to get better..I will free my mind of despair,and focus on recovery..I guess there is some hope,and it's better to get sick now in 2017 than was 20 years ago..there wasn't even mobile phones back then and look now.If they will just research this thing properly and invest in it, they will undoubtly find the cause of it, and posible a cure,or at least medicine to keep it under control..like hiv for example :) I will also keep in mind that every story is different, so i there is no sure outcome for what will happen to me..I belive i have 50/50 chance to recover or become totally disabled..I will go for the better half .See you around!
 
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