Johnskip
Senior Member
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I have ben an avid exerciser sports player especially basketball and body builder I do not want to lose my body. deconditioning sorry
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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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well saidI fear death or severe disability much more than deconditioning. The effects of deconditioning pale in comparison to what we can do to ourselves with even mild overexertion. And the effects of deconditioning are easily reversible - declines caused by ME relapses are not.
I have ben an avid exerciser sports player especially basketball and body builder I do not want to lose my body. deconditioning sorry
I sympathize. The general medical consensus from ME experts is we die maybe twenty or more years younger than we should. For the big killers, heart disease, cancer and suicide, we die about ten to fifteen years younger than the rest of the population.I don't mean to be unsympathetic....................I am the world's dunce at physical fitness....................but keeping myself alive over the past few decades is my priority. Many, many others have failed. I am now, frankly, failing too.
I sympathize. The general medical consensus from ME experts is we die maybe twenty or more years younger than we should. For the big killers, heart disease, cancer and suicide, we die about ten to fifteen years younger than the rest of the population.
We have to survive long enough to be able to be cured and begin working toward full recovery.
I do want to add though that for many of us it appears we have a molecular switch governing much of this. Spontaneous short term remission, as in hours or days, shows we can go from disabled to recovered and back to disabled. This is part of the evidence that full recovery is possible, and shows that if we can figure out a good cure it might need only hours to work. It will be like flipping a switch at the molecular level.
I have ben an avid exerciser sports player especially basketball and body builder I do not want to lose my body. deconditioning sorry
I was fearing the same, since I have POTs also I need to avoid it.
I always "exercise" w CFS, so I do not decondition. I do soft walks, but I do better on lay down exercises than standing (due to OI is better not to fight gravity). I measured my AT in a lab which is 115bpm. So I can exercise under AT. I started w 5min on 5min off (lay down), (this was measured so I know it was safe for me). But if you don't have access you can start as low as 1min or even less.
My "exercise" Has changed based on my disability and I adjust based on what I can do. Now I can do squats (do 10 then go about my day then do 10 more..... I don't sit down and exercise because I just can't but I always fit a routine through out the day. I do like 15 seconds plank on elbows (I work my way up and down based on evergy), for sure I walk at least 10min a day up to 1h (based on energy) I walk for pain management and also is the only way I can progress. Bike I was doing to straighten the legs but I didn't notice progress so I am off of that for now.
I also have some bands and do some leg lifts (no more than 10 a day) and arms pull *(this was given as therapy for shoulder pain) so not exercise per say but it maintains my arms firm.
I recommend to be careful since I have relapsed myself 3 times w exercise, but I also notice in my case, I don't progress unless I workout. So Is a love hate relationship for me.