Poll>>>Has anyone had success with graded exercise?

[Seven7]

Here is my humble opinion based on my case and observations: Exercise intolerance comes from the autonomic dysfunction, If you read the people with POTs they struggle w exercise like we do. THE TRICK is to treat the autonomic dysfunction and the PEM and The intolerance will ease. If you do not treat, then you can exercise under your AT in a safe way. DO NOT GO OVER YOUR AT if you are having issues or it will crash you.

I do not consider beta blocker the answer based on observation from people where they feel better but I read all the orthostatic intolerance symptoms they are having. I am talking about vasoscontrictor + Florinef combo like.

If you are having orthostatic intolerance symptoms then keep under AT, that is the rule I keep anyways, I just raised my Midodrine dose to 15mg every 4h (vasocontsrictor) to a place where I have run for the last 2 days w no payback (YET) but I have been increasing activity slowly based on my OI symptoms (HR is stable, BP stable....).

If when I wake up my HR is higher by 8% I am doing too much and I cut back. This rule was actually given to me by the exercise physiologist and I still follow it no matter how I feel.

 

[Tired of being sick]

@YvieArtist

Was CFS even recognized 40 years ago?

If so, with the morbid evolution of research and acceptance of CFS/ME in the medical community let alone society,has my expectations of recovery and treatment even lower..

I've been basically told that "it's all in your head" since 1978 at the age of 12 onward.

Don't get me wrong, I have pushed myself to ungodly extremes in order to try an hold onto full time careers after careers to no avail.
Due to excessive tardiness,absenteeism,and way below par performance from school at the age of 12 onward
I had employers tell me"how can you be like superman one day then the very next day be like a walking dead man"?

When I was young and ignorant my pride would never let me acknowledge that I had underlying health issues and the fact that the medical community reenforced my behavior has made long term damage much worse on my body and brain..
My guess as to why I could not swallow my pride back then is I was too immature to handle my sickness,so I probably would have committed suicide..

However, being alienated my whole life because of my health, has often made me think maybe I should end it all..

 

[IreneF]

Having experienced both deconditioning and CFS/ME, I can tell you they are not at all the same. When you are deconditioned, you may get tired or have sore muscles as you resume activity, but you don't have PEM or lengthy crashes.

(I had to spend a few weeks in bed because I broke my pelvis. Big ow, but recovery was just a matter of time.)

What I experience now is completely different. This is not to say that GET is useless, but I can't do it. It doesn't address the root of the problem, which is not lack of exercise.

 

[Tired of being sick]

I don't get your reasoning. I overexerted at times and my activity level decreased as a result. That is an understatement - I became very ill. I became less able to earn an income. I think the same has happened to many of us. It took years to recover to my previous level of activity.

I wasn't even exercising deliberately - just doing necessary activities. There is no spare energy for exercise for the sake of it.

Even in remission one has to be careful to avoid over-exertion with ME.

The crucial thing is to listen to your body, ideally with the aid of something like a heart monitor.

I know some people say that they find help from a therapist beneficial, but there is IMO too high a risk of getting a bad one, and no one knows my limits as well as I do.

Activity is exercise , therefore all activities are exercise, mental or physical..

So if we do any extra activities that sends us to bed,we can not tolerate GET..

Now, if we increase activity slowly but surely, GET is successful

Blinking our eye lids takes energy
every thought in our minds takes energy
pushing the button on the remote takes energy(don't laugh at me but sometimes it is hard for me to change the TV channel even with the remote resting in my hand.,All I have to do is move one finger but I still debate over it wasting more precious energy)

Now that I think about it, I think too much!

 

[Tito]

Was CFS even recognized 40 years ago?

As far as I know, Myalgic Encephalomyelitis was officially listed by the WHO in 1969 after Dr Ramsay's suggestion. Interestingly enough, Dr Ramsay initially used the term "Benign Myalgic Encephalomyelitis". But after seeing more and more patients and how ill they were, he removed the term "benign". He became THE expert on the illness after the Royal Free hospital outbreak of 1955 in London.
The term "CFS" was made up after the Lake Tahoe outbreak by the CDC in 1987.

 

[Tired of being sick]

Exactly,

"made up"
or
"make believe"

AIDS were too big of an epidemic in the 80's to recognize ME here in the US..

If you were not HIV positive,you were just imagining things,from the fear of catching AIDS..

This is what I believe went down and I'm not even going to research it..

 

[Valentijn]

Here is my humble opinion based on my case and observations: Exercise intolerance comes from the autonomic dysfunction, If you read the people with POTs they struggle w exercise like we do. THE TRICK is to treat the autonomic dysfunction and the PEM and The intolerance will ease. If you do not treat, then you can exercise under your AT in a safe way. DO NOT GO OVER YOUR AT if you are having issues or it will crash you.

PEM is distinct from the exercise intolerance which comes with the autonomic dysfunction. Most ME patients get both, though a few lack OI. Uncomplicated OI patients get the exercise intolerance, but it goes away with treatment or by doing exercises laying down - this doesn't help with PEM in ME patients.

 

[Seven7]

PEM is distinct from the exercise intolerance which comes with the autonomic dysfunction. Most ME patients get both, though a few lack OI. Uncomplicated OI patients get the exercise intolerance, but it goes away with treatment or by doing exercises laying down - this doesn't help with PEM in ME patients.

I understand the difference since I have both. Let me explain what I mean:

Example:
I feel great, I have been hydrated and I am asymptomatic. I am on 5mg of midodrine (I know is not enough) The exercise intolerance goes away (I can exercise without feeling I am going to die in the moment, I do no experience that burning sensation just by moving legs, no shortness of breath...), but 3 days later or so I pay for it dearly (PEM: head flue like, INTENSE muscle pain, latic acid like, Increased fatigue, If crash too bad usually diahrreah....)

Now I take 10 or 20 mg of Midodrine, wear compressions and just do all the loading water+electros ok: I can run Vs walk. No bad feeling during exercise (no exercise intolerance), But a few days later the PEM is not there or is reduced to almost nothing.

So My observation is that my PEM is in correlation of how my OI is doing and being treated. The worse my OI the worse the PEM will be. PEM is a sign to me that I am under treating the OI. Again this is my personal behavior, I am sharing in case others see the same pattern. I can control my PEM by adjusting my OI treatment.

 

[Tired of being sick]