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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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Exercise strategies?

Basilico

Florida
Messages
948
I recently attempted to return to the gym. I took BCAA beforehand and my strategy was to do a variety of things like squats, pull-ups, sit-ups, curls, etc... but with about 50% of the weight that I was capable of using. This resulted in a lot of the expected soreness but no PEM or other negative effects after the first try. I waited 7-10 days between gym visits to make sure I had recovered completely. Unfortunately, after the 3rd gym experience, I got bad PEM (which for me includes some nasty mental effects). I had to stop the strength-training at the gym.

At this point, I am still capable of walking for 20-40 minutes depending on the day, and sometimes I am able to ride a bicycle for the same amount of time. So my strategy now is to do the activities that don't trigger a bad response at all and stay away from the ones with risk.

I am also occasionally doing mild body-weight exercises instead of using weights. For example, I used to do multiple sets of lunges with a 10lb weight in each hand. Now, I occasionally do 1 set of lunges with no weight. Or alternating standing on one foot to improve balance.
 
Messages
13
I practice Tibetan hormonal gymnastics almost every day. It helps to improve my condition.
Here is a video instruction from Dr. Peter Reznik -
 

Dechi

Senior Member
Messages
1,454
@TiredBill

I'm glad you were able to work and have a career despite ME. It must have been very, very hard at times. I have only been sick for about 3 years and so far going back to work is not an option. My hope is to eventually be able to find fulfilling work. Something that I would enjoy doing and wouldn't kill me. Until then one can dream...
 

TiredBill

Senior Member
Messages
335
@TiredBill

I'm glad you were able to work and have a career despite ME. It must have been very, very hard at times. I have only been sick for about 3 years and so far going back to work is not an option. My hope is to eventually be able to find fulfilling work. Something that I would enjoy doing and wouldn't kill me. Until then one can dream...

@Delchi Yes, very, very hard at times. Tougher than I think anyone without CFS could quite understand. But I also had easier times, and jobs that paid extremely well, and that helped reduce much of the stress of just surviving economically. In recent years I've had to draw on those savings, so I'm grateful for the good financial years (no matter how challenging).

I very much hope things improve for you and that are eventually able to find work you enjoy and that feeds you soul (and doesn't exhaust you). I don't think there are any paths with this disease that are easy. I understand what you are going through and wish you all the best.

Bill
 

TigerLilea

Senior Member
Messages
1,147
Location
Vancouver, British Columbia
@TiredBill

I'm glad you were able to work and have a career despite ME. It must have been very, very hard at times. I have only been sick for about 3 years and so far going back to work is not an option. My hope is to eventually be able to find fulfilling work. Something that I would enjoy doing and wouldn't kill me. Until then one can dream...
Is there anything you could do from home to earn some money? I do office work part time from home. Unless a miracle happens I can't see me ever being able to work full time or outside of the home.
 

Murph

:)
Messages
1,799
I find that I have far more luck with things that involve no real endurance. light resistance exercise is good so long as there are frequent breaks. My theory is that something is building up or wearing down that causes PEM. So long as I include regular breaks, I can ward off the PEM...
 

Dechi

Senior Member
Messages
1,454
Is there anything you could do from home to earn some money? I do office work part time from home. Unless a miracle happens I can't see me ever being able to work full time or outside of the home.

It's hard to get a job because I can't be consistent and commit to a fixed number of hours/days. Some weeks I could work 2-3 hours a day for a few days, other weeks I couldn't work at all. It's very hard to make a living with such limitations.