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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Should i force myself to exercise?

SaveMe

Senior Member
Messages
421
Location
the city
or stay in bed? you can read my symptoms in the previous post i did. My body is telling me to rest in bed, but my motivation and eagerness is telling me to pick myself up and go for a swim- in hopes of feeling better down the road.

im frustrated
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
you post worked, we can see it.

no dont "push yourself" if your body is saying you need to rest in bed, listen to your body.

(ive no idea where your previous post is... better if you provide a link if you want people to read a previous post so we can find it)
 

ballard

Senior Member
Messages
152
If you can figure out the edges of your "energy envelope", and stay within it you won't cause a crash.

The trick is to know what you can do and still stay within the envelope. Most people figure it out by trial and error.

Your body will let you know.

My suggestion is to do something easier than swimming, like walking a little, and see how you do. Then if you don't crash, try something a little harder, maybe a short,
very gentle swim.

What I wouldn't do is plunge in and swim ten laps, even though I think that's what you
( and most of us) would really like to do.:D

Take it easy and best wishes.
 

Anika

Senior Member
Messages
148
Location
U.S.
The suggestions to start lower to figure out your limits are probably good.

One thought, though, on type of exercise. Many of us have issues with orthostatic intolerance, where being upright causes issues. I think some doctors have suggested that exercises that don't "vertically challenge" us may be easier to deal with. Something like swimming or a recumbent cycle would be good (but not necessarily available or convenient).
 

SaveMe

Senior Member
Messages
421
Location
the city
Sorry I didnt reference that link. I copied and pasted it below. QUESTION FOR EVERYONE!

1. Exhaustion
2. Widespread muscle pains
3. Headaches
4. Brain fogs- (attn./concentration) can stare blankly for long periods of time, where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Metal fatigue. Sluggish thinking.
5. Excessive mucus in throat that I spit up
6. Sunlight sensitivity really hurts my eyes, tear up easily
7. Initial rapid, sudden weight loss during onset of virus
8. Loss of strength, (can’t make a strong fist)
9. P.E.M (bike ride incident, even during exercise) wiped out the following day
10. Dizziness (especially during exercise)
11. Un-refreshing sleep
12. Feeling that I am approaching death (episodes) horrible malaise
13. Pulsating/Pounding/Faint head upon standing  Orthostatic Intolerance
14. Pain/Temp sensitivity (colder than usual, hot flashes, pat on the back incident)
15. Swollen lymph nodes in neck and groin area felt by doctor
16. Missed days of school, can’t get up from chair/bed—what happened to my internal energy supply?
17. Grinding/Snap, crackle, pop neck (stiff in mornings)

How many of these do you have?
And if you dont mind, specify which numbers you experience. :) Thanks guys
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Sorry I didnt reference that link. I copied and pasted it below. QUESTION FOR EVERYONE!

1. Exhaustion
2. Widespread muscle pains
3. Headaches
4. Brain fogs- (attn./concentration) can stare blankly for long periods of time, where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Metal fatigue. Sluggish thinking.
5. Excessive mucus in throat that I spit up
6. Sunlight sensitivity really hurts my eyes, tear up easily
7. Initial rapid, sudden weight loss during onset of virus
8. Loss of strength, (can’t make a strong fist)
9. P.E.M (bike ride incident, even during exercise) wiped out the following day
10. Dizziness (especially during exercise)
11. Un-refreshing sleep
12. Feeling that I am approaching death (episodes) horrible malaise
13. Pulsating/Pounding/Faint head upon standing  Orthostatic Intolerance
14. Pain/Temp sensitivity (colder than usual, hot flashes, pat on the back incident)
15. Swollen lymph nodes in neck and groin area felt by doctor
16. Missed days of school, can’t get up from chair/bed—what happened to my internal energy supply?
17. Grinding/Snap, crackle, pop neck (stiff in mornings)

How many of these do you have?
And if you dont mind, specify which numbers you experience. :) Thanks guys

All of those except the weight loss at onset. Its very normal to have that kind of symptom range for CFS/ME or many more. Your point 13, you probably have coexisting POTS which you can work at being treated for too. POTS could be making several symptoms there you have worst then they otherwise may be eg headaches, dizziness, brain fog.
 

SaveMe

Senior Member
Messages
421
Location
the city
All of those except the weight loss at onset. Its very normal to have that kind of symptom range for CFS/ME or many more. Your point 13, you probably have coexisting POTS which you can work at being treated for too. POTS could be making several symptoms there you have worst then they otherwise may be eg headaches, dizziness, brain fog.

interesting, so tilt table test ?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
If you have PEM then don't exercise. It could cause immune activation and your other symptoms will get worse. Be disciplined and analyze what you can do safely. If frustrated find other ways of expressing it (i.e. meditation, relaxation, painting, listening to music or something else low key that you can do).

Harness your "motivation and eagerness" to try and find a workable solution instead of harming you. Say "no, stop" and look at the problem differently.

Would out what you can do in a day that maintains you at a reasonable level, then experiment to see how this changes or if it can be added to.

Are you able to do more in the morning or evening for example? I discovered that I can physically do more at night if I rest until noon. Find out what your own personal pattern is.

Don't be in denial, if you cannot do much then you cannot do much.

Personally I find the "spoons theory" a good one for me to work in. Takes discipline though to stick to my limits. It's a question of you discovering what you can/cannot do rather than force a sick, ailing body to damage its self further

http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/
 

SaveMe

Senior Member
Messages
421
Location
the city
That article is about conserving energy--I understand.
But say I force myself to exercise really hard. Whats the worst that can happen? It takes a day to recover? Im asking because I haven't attempted to "push it" in a while now.
Thanks. in addition, which number(s) of symptoms do we share?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
But say I force myself to exercise really hard. Whats the worst that can happen? It takes a day to recover? Im asking because I haven't attempted to "push it" in a while now.
Thanks. in addition, which number(s) of symptoms do we share?

Pushing yourself to exercise really hard may be something you'd regret! Sure you might recover in a day...but it might also take six days, six months or six years!

Better to try to stay within your limits--i.e. stop before experience tells you that you will get PEM. A week of pushing myself with exercise set me back years!

As far as how many symptoms we all share, I think I have had (I'm better these days) 15 out of 17 and that is probably about average.

Sushi
 

SaveMe

Senior Member
Messages
421
Location
the city
QUESTION FOR EVERYONE!

1. Exhaustion
2. Widespread muscle pains
3. Headaches
4. Brain fogs- (attn./concentration) can stare blankly for long periods of time, where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Metal fatigue. Sluggish thinking.
5. Excessive mucus in throat that I spit up
6. Sunlight sensitivity really hurts my eyes, tear up easily
7. Initial rapid, sudden weight loss during onset of virus
8. Loss of strength, (can’t make a strong fist)
9. P.E.M (bike ride incident, even during exercise) wiped out the following day
10. Dizziness (especially during exercise)
11. Un-refreshing sleep
12. Feeling that I am approaching death (episodes) horrible malaise
13. Pulsating/Pounding/Faint head upon standing  Orthostatic Intolerance
14. Pain/Temp sensitivity (colder than usual, hot flashes, pat on the back incident)
15. Swollen lymph nodes in neck and groin area felt by doctor
16. Missed days of school, can’t get up from chair/bed—what happened to my internal energy supply?
17. Grinding/Snap, crackle, pop neck (stiff in mornings)

How many of these do you have?
And if you dont mind, specify which numbers you experience. :) Thanks guys
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
how long did it take for you to see recovery from symptoms?

Depends on a huge number of variables:

1. whether you try treatments that actually make you worse; :confused:

2. whether you make some carefully researched changes in lifestyle, diet, supplements;

3. whether you have a really good doc who is very experienced with ME/CFS;

4. whether you do a lot of your own research and try some protocols that make a lot of scientific sense (like, say methylation therapy), or LDN;

5. whether you have good or lousy genetics in the places that count;

6. what your toxic exposures have been;

7. which co-infections you have;

8. whether you are positive for XMRV

9....etc.

That said, and having had some good doctors, done a lot of research and networking, having done a few good therapies and avoided some more extreme (and perhaps dangerous) ones, it took me about two years to start getting better.

I think we all discover that the person most interested in our recovery is ourself and that learning as much as we can is one of the most helpful things we can do.

Sushi
 

SaveMe

Senior Member
Messages
421
Location
the city
Depends on a huge number of variables:

1. whether you try treatments that actually make you worse; :confused:

2. whether you make some carefully researched changes in lifestyle, diet, supplements;

3. whether you have a really good doc who is very experienced with ME/CFS;

4. whether you do a lot of your own research and try some protocols that make a lot of scientific sense (like, say methylation therapy), or LDN;

5. whether you have good or lousy genetics in the places that count;

6. what your toxic exposures have been;

7. which co-infections you have;

8. whether you are positive for XMRV

9....etc.

That said, and having had some good doctors, done a lot of research and networking, having done a few good therapies and avoided some more extreme (and perhaps dangerous) ones, it took me about two years to start getting better.

I think we all discover that the person most interested in our recovery is ourself and that learning as much as we can is one of the most helpful things we can do.

Sushi

thanks man very informative
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Symptoms can start during exercise or even 72 hours after. I get a set of symptoms straight away but the full horror of PEM doesn't hit me until the 24, 48 or 72 hour mark.

Recovery can take from days to weeks. If forced to over exercise for a long period it may be permanent. An exercise program can change an ambulatory patient to a bedbound one. This happened to me.

I you want to read further on this look for papers from Dr's Light, Dr Klimas and Staci Stevens. They should how different body systems in PWCFS react to exercise and over what time period.

You could risk becoming permanently much worse (with CFS symptoms become more severe) or have a life threatening problem (like with your heart) by over exercising if you fit the profile for this disease.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Save me, i have pretty much all 17 of those symptoms, plus extreme eye/head pain and some other neurological ones such as inability to retrieve words, sluured speach, inability to say words that you can think, inability to read aloud, getting letters in words mixed up as you speak. Exertional malaise, post exertional malaise and delayed post exertional malaise. I also have hormone problems, pms, lung problems, palpitations, chest pain, gut problems, systemic candida, food allergies, sinus problems and on and on it goes.
I was first ill for about 3 years 16 years ago, then recovered to only very mildly affected for about 10 years then had a massive relapse about 3 years ago after catching measles. This time i have been much more ill and am not recovering as much as quickly.
Do not push yourself to exercise, it can make your condition worse or prolonged. If you are young, have not been ill for that long and rest as much as possible, reducing all stressors and take care of yourself (supplements, diet. pacing etc) then you have a good chance of recovery sooner rather than later. Good luck!
 

SaveMe

Senior Member
Messages
421
Location
the city
Symptoms can start during exercise or even 72 hours after. I get a set of symptoms straight away but the full horror of PEM doesn't hit me until the 24, 48 or 72 hour mark.

Recovery can take from days to weeks. If forced to over exercise for a long period it may be permanent. An exercise program can change an ambulatory patient to a bedbound one. This happened to me.

I you want to read further on this look for papers from Dr's Light, Dr Klimas and Staci Stevens. They should how different body systems in PWCFS react to exercise and over what time period.

You could risk becoming permanently much worse (with CFS symptoms become more severe) or have a life threatening problem (like with your heart) by over exercising if you fit the profile for this disease.

they need to hurry up with a diagnostic testt for cfs
 

SaveMe

Senior Member
Messages
421
Location
the city
Hi Save me, i have pretty much all 17 of those symptoms, plus extreme eye/head pain and some other neurological ones such as inability to retrieve words, sluured speach, inability to say words that you can think, inability to read aloud, getting letters in words mixed up as you speak. Exertional malaise, post exertional malaise and delayed post exertional malaise. I also have hormone problems, pms, lung problems, palpitations, chest pain, gut problems, systemic candida, food allergies, sinus problems and on and on it goes.
I was first ill for about 3 years 16 years ago, then recovered to only very mildly affected for about 10 years then had a massive relapse about 3 years ago after catching measles. This time i have been much more ill and am not recovering as much as quickly.
Do not push yourself to exercise, it can make your condition worse or prolonged. If you are young, have not been ill for that long and rest as much as possible, reducing all stressors and take care of yourself (supplements, diet. pacing etc) then you have a good chance of recovery sooner rather than later. Good luck!

Justy,
ive been ill for nearly 1 1/2 years. how long should i rest 4