• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Exercise Question

Daffodil

Senior Member
Messages
5,875
hi all. i have a question about exercise and wonder if anyone has any insights..

i can walk fast-ish on the treadmill about 3 miles comfortably, about 3 times a week. however, when I do this, I cannot do much else during the day and often need a nap after the exercise. sometimes the next day, i am more tired due to the exercise the day before and sleep 1/2 the day!

given this, is there any point in doing the exercise, or should I just putter around the house/buy food/cook/clean etc with the energy i have? will i be more likely to lose weight using up all my energy at once?

lol sounds like a silly question when i type it out. i suppose its better not to exercise since i do nothing the rest of the day and sometimes the next day too. i think i keep hoping that exercise will make me stronger and able to do more over the long run like it does with healthy people but it never happens this way.

what i really need to do is control my appetite/cravings somehow...
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
i can walk fast-ish on the treadmill about 3 miles comfortably, about 3 times a week. however, when I do this, I cannot do much else during the day and often need a nap after the exercise. sometimes the next day, i am more tired due to the exercise the day before and sleep 1/2 the day!

given this, is there any point in doing the exercise, or should I just putter around the house/buy food/cook/clean etc with the energy i have?
If you are capable of walking 3 miles, but pay later, what about walking a mile and not paying? Though we know that our illness isn't caused by deconditioning, we still be can easily become deconditioned, lose muscle mass etc., and we will pay for that later too!
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
what i really need to do is control my appetite/cravings somehow...
Protein snacks with some fat help my cravings. I was avoiding most fats and then did a lot of reading and even tried the keto diet (which did not go well), but since then have not as been afraid of eating fat - e.g., I find that nuts or cheese with a sourdough rye cracker are good snacks, also olives! But I stay away from high carbs or sugary stuff.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Or what about "only" doing 2 miles or less? You say you are comfortable with the exercise. How long has it taken you to get up to this? Perhaps cut back, and build up more slowly?

People would be amazed all that I do. One summer I was sleeping 12 hours after a hard day (1 hour) of exercise. But that didn't happen this year, and I think the year before. I usually sleep at least 8 hours, but up to 10, even without exercising. My symptoms get worse the next day, seems like my adrenaline kicks in, and dampens the typical issues for me (pain, fatigue, brain fog)

GG
 

Daffodil

Senior Member
Messages
5,875
thanks for all the suggestions, guys. i will write more when brain fog isnt as bad.

i was on low-dose lithium for several months due to worsening depression. i am not able to take most SSRI's because they interact with the clarithromycin i am on (which I cannot stop or I become totally bedridden). Li did help my depression somewhat but i gained about 9 lbs on it (I am short). In order for it to really help, I would need to increase the dose further. The weight gain and how it was making me look was upsetting me so I decided to stop it altogether. So now I am trying to lose the 9 lbs ...while depressed....so controlling food intake is a million times harder and indeed, almost impossible lol

if i could somehow be OK without that really "full" feeling that seems to ease my sadness for a while, I probably wouldnt even need to exercise at all.

I do think that maybe walking 2 miles might be a good idea....and maybe I can do it more times a week.

thanks, all
 

Seven7

Seven
Messages
3,444
Location
USA
I use the walking becuase is the only way I move forward ( I have POTS aLso) but you cannot relapse or have PEM or you are doing too much.
You have to go down where you are ok afterwards ( and your HR goes back to resting next day).
Track your resting heart rate, it will tell you if it is too much (8% higher than day before, you did too much). You need to do everything you need to do + excercise and stay w no PEM.
 

Wishful

Senior Member
Messages
5,679
Location
Alberta
I usually go for a 2.5 km, 45- minute walk daily. Last winter I was doing that walk twice a day. There have also been periods where I haven't gone for daily walks. I haven't noticed any differences in health, energy, or weight in any of those periods. I assume that exercise is good for health, but I haven't personally seen a significant difference from it.

I do feel psychologically better for having gone for a walk. Besides, walking through the woods is pleasant, and I get to see wildlife occasionally.
 

Daffodil

Senior Member
Messages
5,875
@lnester7 hmm...thats an idea. I am on Atenolol due to tachycardia that I got after 2 yrs on AZT (repolarization?). Not sure if that makes a diff here lol

@Wishful I am the same way. It helps my depression and is generally a positive thing but does not seem to affect weight. They say cardio is required for weight loss.....but most comes down to diet.

Well, I dont want to take Li, which helps depression but makes me gain weight...and depression alone prevents me from losing weight so lol I am stuck

I wonder if there is anyone with this disease who used to be a therapist and would therapize me over the phone for cheap lol

xoxo
 

Seven7

Seven
Messages
3,444
Location
USA
Not sure if that makes a diff here lol
Yes it makes a difference and I have not found a doctor to explain how to calculate the new AT (and I don't want to pay the $US2,000 to find out). But the resting is un affected, so you can still use if next day resting HR is over 8% you over did it. But do not use the HR while exercising if you take the beta blocker, My POTs doctor told me not to take the BB before excercise but yes to the midodrine which I found bizarre, I took a vacation from the walking so not doing much (maybe a block a day) for now.
 

Rebeccare

Moose Enthusiast
Messages
9,064
Location
Massachusetts
My doctor recommended recumbent cycling for exercise. This article explains why, if you have the energy to read it--the short story is his theory is that people with CFS have nerve damage in their veins which makes them bad at pumping blood to the heart. Using a recumbent cycle makes it so that your blood doesn't have to fight against gravity to go back to your heart, unlike exercising on a treadmill or upright cycle, so this type of exercise might be better tolerated.

But if that doesn't work, you can incorporate a fitness routine into housecleaning!
 

Daffodil

Senior Member
Messages
5,875
I had an alert that someone liked a post on this old thread so I thought I would update: I had to stop exercising altogether. For some reason, I could not do it anymore. I also feel kind of sick unless I feel full so I ramped up the eating, too. I don't know how I got to the level that I could walk 3.5 miles! I am nice and plump now. As my friend would put it, looking "fluffy" LOL