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

[worldbackwards]

Oh, I'm still very ill. I am improving, but it feels like I'm rehabilitating myself within the illness - some symptoms have shifted a lot, other barely budge. Nothing really moved at all during GET, unless it went backwards.

 

[A.B.]

I have not tried a proper graded exercise therapy because the idea that I'm merely deconditioned is ridiculous. Initially when my symptoms were mild, I was physically active and it didn't do anything to stop the illness progression, though I did feel better right after exercise. The illness I have is on an entirely different level than fitness. And if I've learned anything about it, it's that I have to adapt to whatever my current limits are.

People who advocate GET are out of touch with reality. They necessarily believe that you are not sick and have merely inflicted this suffering on yourself via some sort of elaborate self deception only they can see through. Who exactly is mentally ill here?

 

[determined]

I was asked which was worse....cancer or CFS. Cancer was by far more scary, but I really didn't have any symptoms since it was caught early. CFS easily wins the "more debilitating" category. When I had cancer people were bringing me food almost every day, and I had people running errands, helping with childcare, etc. I have so many memories of CFS making a normal life impossible.....just trying to color a page with my young child, just that back and forth movement, was enough to make me feel flu-like.

I've been out from cancer for ten years...the benefits of chemo (and make no mistake, chemo made my pain much, much worse) in terms of energy/weakness/fatigue lasted about 18 months or so, then slowly went back to my baseline. In the last several years, I attribute my ability to work full time to the improvements I made with methylation supplements. Like I said, I am still chemically sensitive and have to really stay on top of pain cycles (stretching helps as well as lots of yogic breathing), but life is good.

I don't consider myself to be cured. My weakness/fatigue is still a possibility, it lurks under the surface. I certainly would not run or lift heavy things since those are sure triggers.

 

[Tired of being sick]

585 views and only 21 votes?

 

[Sushi]

@Tired of being sick
There may be some confusion about the terminology. For instance, I haven't voted because I haven't done GET itself. What I have done is whenever I have made some gains through treating the illness medically, I've experimented with adding in a bit of exercise.

So, for me, exercise has no role in improving my ME/CFS symptoms, but when I am well enough to tolerate some exercise, it does help build muscles--which of course we need.

Sushi

 

[Tired of being sick]

@Sushi
You just said that exercise does not help your ME/CFS symptoms which means you had no success with exercise.

However when your symptoms subside you exercise or just become more active..

So the only way you can exercise is if you have a remission by a treatment that was not exercise related. So since your illness comes back even if you do exercise during that remission,technically graded exercise does absolutely nothing for the illness itself and will make symptoms worse if you try to exercise when your CFS/ME is moderate to full blown..

So that would be a big fat no on the poll..

 

[Tired of being sick]

On a different note,

I just came back from the ER,
1st off
the only way I can manage my CFS/ME/POTS/CPS symptoms along with chronic neck and back pain comfortably is to lay down multiple times through out the day equaling about 70% to 90% of the time (not counting sleep)..

When I'm in an upright position sit or stand, it does not take very long for my neck to drive me absolutely insane so I wear a collar or an inflatable traction devise..(not as much as I should though because the collar/traction devise can get annoying as well and wearing them in public draws way too much unwanted in my eyes negative attention)

On top of that It does not take very long for my POTS to go full throttle when on my feet.

Today I was not able to manage my symptoms in bed so I took my BP/Pulse and it was (154/96/118) which always becomes text book perfect (110/70/72) after I lie in bed for awhile except for today.because I was feeling like crap while lying in bed for a substantial amount of time.

So I went to ER.and told them my story for the gazillionth time and got the same response as always which was "you need to get out of bed and move and exercise. That is what your problem is"..
Keep in mind, I told them that I was diagnosed with POTS but they ignored me and went off my records from this particular ER which I was diagnosed with sinus tachycardia..
They tried to give me Metoprolol! which my POTS doctor told me never to take any meds that lower or raise my BP/Pulse for the fact I have violent fluctuations of BP from extremely low to extremely high while my Pulse steadily climbs higher and higher on the tilt table..so instead of calling my POTS doc she said that I refused and was not cooperating!

So

They took 2 chest Xrays
Then
They took a blood and a urine sample and it came back as a urinary infection which is the 1st one I have ever had or at least diagnosed with ..

So they said that the urinary infection was causing my more unusual tachycardia than my usual..

Which was a big relief for me!!!

Cause when the day comes that I am unable to manage my boat load of symptoms while lying down..

This will be the day that I will throw in the towel...

 

[Sushi]

First of all, glad the ER actually found something to treat that may help you in the moment.

@Sushi
You just said that exercise does not help your ME/CFS symptoms which means you had no success with exercise.

I guess it is how you look at it. I never exercised with the intention of improving my ME symptoms, but because I enjoy exercise and want to keep my muscles working. I only exercise at the level that I tolerate at the moment. I haven't "gone into remission," rather, slowly improved with treatment. With each plateau of improvement, I find I can do more strenuous exercise. Except in the very first few months, I have been able to do some exercise even if it was extremely mild and for a short duration.

However when your symptoms subside you exercise or just become more active...

I wouldn't say my symptoms subside, it is more like each phase of treatment brings improvement in the targeted area.

...So since your illness comes back even if you do exercise during that remission,technically graded exercise does absolutely nothing for the illness itself and will make symptoms worse if you try to exercise when your CFS/ME is moderate to full blown...

My illness doesn't "come back"--it is continuous, but there is a slow incremental trend toward improvement. I have never exercised and gotten worse (probably because I use an HR monitor and am pretty careful about staying inside my energy envelope) and never tried "graded" exercise. When I am feeling better, I increase exercise.

Sushi

 

[Tired of being sick]

@Sushi

Wow,I wish I could steadily get better or steadily improve..

 

[Sushi]

@Tired of being sick

I've been getting good treatment for years. Before that, yes, I would crash if, for instance, I rode my bike. Treatment seems to have stabilized me, slowly. Now if I were so foolish as to, say, ride my bike for an hour, I'd be sick, but for only about a week. I don't seem to get long-lasting downturns from going over the edge of my energy envelope anymore--though I am very careful to try to stay inside it.

It has been very slow, but chipping away at things has helped me.

Sushi

 

[MeSci]

585 views and only 21 votes?

Maybe not many of us have tried GET, because we have learned that exertion makes us worse, or have read the warnings in places like PR!

 

[A.B.]

Maybe not many of us have tried GET, because we have learned that exertion makes us worse, or have read the warnings in places like PR!

0 yes, 25 no seems pretty clear though.

 

[Tired of being sick]

If my activity level were a 6 I would definitely be exercising..

So maybe I should have been more specific meaning disabled or activity level of 2 and lower..

My bad..

I apologize..

 

[Tired of being sick]

But then again using the 2 or lower scale could most definitely bring skepticism..

I can just hear a doctor or therapist now, saying.
"Could it be that the activity level of the 2 and lower sufferers is because they do not exercise period and are in bed 70% to 90% of the time..........."

There is no question mark at the end of the above most likely quote on purpose..

You see, they do not understand that getting ourselves out of bed to get something to eat or take a shower or brush our teeth,or even get dressed can be extreme exercise..
Which never gets easier to do, which then takes the "graded exercise" theory and throws it right out the window.

For the fact that we do it often and we never and I mean never become "conditioned" to these basic taken for granted activities

 

[MeSci]

If my activity level were a 6 I would definitely be exercising..

So maybe I should have been more specific meaning disabled or activity level of 2 and lower..

My bad..

I apologize..

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.

 

[Tired of being sick]

!!!!!!! in your OP is what Teed me off..

 

[Scarecrow]

26 votes for no and zero for yes; 1076 views. There seems to be rather a lot of morbid curiosity around here.

Not much of an endorsement.

By way of comparison, in the ME Association's 2010 survey, 3.4% of respondents said they were 'greatly improved' and 18.7% 'improved' after GET. On the other hand about 50% were either slightly or much worse.

http://www.meassociation.org.uk/wp-content/uploads/MEA-Management-Survey-2010.pdf

The PACE so-called recovery paper reported 22% 'recovered' (or something better than moderately disabled) following GET.

I've met one person who's done it. She said it was "helpful" but she certainly wasn't recovered by any sensible definition, i.e. wasn't able to work but desperately wanted to. Would that count as a success?

 

[alex3619]

Be careful with assuming things about views. Is this unique views? Or is much of it the same people coming back again and again because they are interested? This is about the tenth time I opened this thread.

 

[YvieArtist]

Yes..I came down with CFS in my late twenties ( now 68). Never bedridden until in my 60's for a few weeks, but now doing better..But during a remission when I was 47' I started exercising slowly at a gym with a trainer. The first two weeks, I got mild symptoms but was able to slowly push past that to going regularly to the gym three days a week for THREE YEARS and I felt FABULOUS like 16 years old again and NO symptoms. THEN I felt so well I started working too much and missing days at the gym. As my body got weaker and the stress and work increased I CRASHED HARD! Became VERY SICK, the worst I had ever been. Took me four years to recover, but I did! However, I never returned to the gym and have endured symptoms on and off ever since. So the answer? Maybe I could have kept the exercise up if I hadn't over worked, over stressed myself, but I didn't know it could come back and I'm A type personality and when feeling good, hard to slow down. So many things I like and want to do.
So now I can't again,.....going on four years this fall. My sofa is my best friend now. I may get better again, I don't know as now my age is against me, But trying to learn to accept what I can do, and pace. D-Ribose has helped but not a cure.
Good luck to all. Know that no matter how good you may feel and get, it can ALWAYS return if not careful. But many can recover and I DID.. But In my case, I blew it.
Yvonne

 

[Scarecrow]

Be careful with assuming things about views. Is this unique views? Or is much of it the same people coming back again and again because they are interested? This is about the tenth time I opened this thread.

Me too!

Hence the morbid curiosity.