has anyone really benefited ie cured by exercise?

[Mij]

@jann1033 you wrote "Before that(pseudo pacing) pem led to flare led to relapse if it continued. This last flare, first bad one since I did that with the pacing like stuff, was different though. Not much of the flu like stuff but more neuro stuff I used to have only after i had a relapse for a while. And more sleepiness than usual in pem so like an intense flare/ but not total relaspe. I don't know if the pacing changed that or if the me is morphing again like it did after the first 10 yes.[/quote]"

I would say my PEM has changed over the years too, I no longer experience flu-like/ sore throat. In the video Dr. VanNess explains that every system is impaired and it depends on which systems are more affected, for some people it's primarily cardiac dysfunction while others it's metabolic. This could explain why some of us can do more while for others it could mean death.

 

[jann1033]

@jann1033 you wrote "Before that(pseudo pacing) pem led to flare led to relapse if it continued. This last flare, first bad one since I did that with the pacing like stuff, was different though. Not much of the flu like stuff but more neuro stuff I used to have only after i had a relapse for a while. And more sleepiness than usual in pem so like an intense flare/ but not total relaspe. I don't know if the pacing changed that or if the me is morphing again like it did after the first 10 yes.

"

I would say my PEM has changed over the years too, I no longer experience flu-like/ sore throat. In the video Dr. VanNess explains that every system is impaired and it depends on which systems are more affected, for some people it's primarily cardiac dysfunction while others it's metabolic. This could explain why some of us can do more while for others it could mean death.[/quote]
Oh course not having the flu ish stuff much anymore is the main reason the rheumatologist I just went to said I "just have less energy" than some people lol. Can't win

 

[SDSue]

I always think that trying to make a person with ME exercise more, is like trying to make someone on a very limited budget spend more.

Both want very much to be ABLE to do what is being asked, but know that the consequences of doing so will come at a very high interest rate.... and that they personally will be left with the penalties not their "advisor"!!

Both will naturally respond in the desired way as soon as their personal budgets allow.

Both can also "appear" better off than they really are on an isolated special occasion.
But splashing out occasionally should NOT be used as an indicator of their ongoing situation.

Exercise - like spending - will increase naturally as soon as budget allows.

Keela, you're a genius - best analogy yet.

It is my experience that when energy allows, I overdo. In fact, I've repeatedly crashed myself into worse and worse condition over 10 years, ending in housebound/bedbound status by doing too much the moment I got a little energy. It has taken an iron will to hold myself back on "good days" so that I don't permanently crash myself even lower. I've learned the hard way.

To say that an exercise program will cure me is like saying that an Olympic athlete can jump over the Sears Tower if they just apply themselves, believe, and work hard enough. Their bodies are not capable. There are physical limitations. Why is it so hard to comprehend that we, too, have very real limitations.

The lessons of this disease come at a high price. It takes time and repeated PEM, because ME defies all logic and prior experience. I have this disease and I can barely explain it to others. It has taken many years for me to fully comprehend and to learn to pace.

My goal is no longer to "exercise" for the sake of feeling normal or for a runner's high. The threat of relapse is simply too high. My goal is to be completely self-sufficient, take walks, and occasionally socialize. I finally have a respect for this disease and know that I am no better or smarter than other sufferers. There are no shortcuts, and vigilance is my lot in life.

 

[stridor]

For my part, I have tried to give a message of Hope. There was no judgment or presumptions attached. In 2011 my wife was helping me stand, I used both hands on banisters to climb stairs, activity would drop my temp 2 degrees F, keeping a Dr appt ( wife driving, only drove 40 min in 2011 due to cognitive impairment) would knock me down for 3 days (48 hours later).
I'm lucky in that there was no question about the trigger. I tanked after the removal of my amalgam fillings - I had a very high Hg test. Freddd's instructions are helping me get better. I believe that exercise is helping with the final 20% of my recovery. That shouldn't make people get angry. You don't have to buy it and honestly I doubt that I would have either when I could stand for only a minute and needed to rest twice trying to walk a quarter of a mile.

I don't get to walk away unscathed. My adrenals can not be recovered and low glutathione and wonky methylation of DNA contributed to Hyperplastic Polyposis and the removal of my colon.
I am not encouraging anyone to do more than they can. It happens when it happens, if it happens. It's OK to hope.
Best Wishes (honestly), brad

 

[manna]

@stridor for my own part man, i'm certainly not angry. stridor is lord of the rings yeah? ive nearly used the same username. i got ill post removal too...well i got worse following that and had gotten ill following the placement of one filling in addition to the other 6. i don't know which hg mercury test you had but, generally speaking, high levels can be a good sign as they can indicate that you're excreting mercury and low levels can mean build up.

for me its not that i don't buy it but that i genuinely think that it quite possible you're holding yourself back with the exercisng. i have more energy at the mo but im worse in some ways. getting weak and full blown me/cfs occurs when i improve. i take brain fog as a good sign as its better than the state of panic my body's in at the mo. fatigue and fog, to me, indicates a body thats still able to recognise the state its in so feels awfull...certain kinds of discomfort indicating the addressing oif the problem...or the ability of the body to try and address the problem. if i exercise i jumble up my solar plexus which causes energy to get trapped inside me raher than flow through me. when energy flows through me it cleanses and makes me feel weaker as its no longer trapped so can't build up. constipation is one side of this for me as it makes my digestion worse.

for a couple of near recoveries getting "weaker" and feeling worse, for me, lasted till the last few days and then went..(but still wasn't set in stone). it wasn't that i was actually weaker, i was stronger, but the stronger i was the more detox and microbial balancing etc my body did, which semi floors you/me...just like flu does with someone who's "healthy" in general terms.

in some ways explosive, as opposed to implosive like tai chi or qui gong or yoga, forms of exercise can make me feel better and do more but ultimately im worse. im sure that will be hard to understand. most folk "feel" better after the first few years as, in my experience is, their body stops fighting and showing them the signs of illness. i now encourage that state as a means to improve.

of course i could be wrong but so could you. you have to entertain it as a possibilty i think. this is also my experience of recovery and from listening to others...you don't steadily improve from say 20-100%. anyone with me/cfs is always under 30% then get a body transplant feeling that takes them to a 100% in a jump (100% being the average human fitness). should be said that even with that it'll take a few weeks to set in stone. bear in mind that though mercury triggered your illness, bacterial, fungal invasion, caused by the lowering of immunity by mercury, will now be a self fulfilling inner state of poor health, regardless of original cause. mercury is only another hair that can break the camels back.

add to that that you don't need explosive exercise to recover anyway. you can keep your lymph moving with very little movement but the correct movement. as much as possible, all available ennergy should be directed inwards not outwards primarily to the muscles, ime.

is that right? you have no colon? crikey if so. id still believe recovery was possible but thats gonna make it tricky huh. all the best with that.

 

[Artstu]

@stridor if i exercise i jumble up my solar plexus which causes energy to get trapped inside me raher than flow through me. when energy flows through me it cleanses and makes me feel weaker as its no longer trapped so can't build up.

Now I don't wish to get into trouble in asking this question, but that sounds rather strange to me, is that science fiction? am I allowed to say that?

 

[manna]

Now I don't wish to get into trouble in asking this question, but that sounds rather strange to me, is that science fiction? am I allowed to say that?

hi Artsu, well, rules wise, i suppose as long as its not a personal attack then you'll be ok, as far as the forum goes. i don't mind either way. if you're looking down at me, which i don't mind, i would say that ego prevents you from seeing the truth or falseness in anything so it wouldn't serve you personally. just like it doesn't serve me when i do it. if you're being serious then you'll have to expand a bit please. i didn't make it up, its my experience, i could be wrong but then i could be right. to dismiss it out of hand would be a hindrance to open enquiry no? certainly feels more confrontational than inquisitive but i read things wrong sometimes and even so, it'd be your hole, unfortunately.

 

[Artstu]

I'm not looking down on you, I just don't understand where the terms you've used come from, I suppose I'm supposed to say can you direct me to the research about solar plexus energy seeing as that's the term I don't understand.

Actually I shouldn't be lazy, and should look myself, OK I don't believe that sort of thing.

http://www.sunstone-holistic-health-and-healing.com/solar-plexus.html

 

[manna]

I'm not looking down on you, I just don't understand where the terms you've used come from, I suppose I'm supposed to say can you direct me to the research about solar plexus energy seeing as that's the term I don't understand.

it's my experience

 

[lansbergen]

I am not encouraging anyone to do more than they can. It happens when it happens, if it happens. It's OK to hope.

Yes do what you can but stay within your limits.

 

[manna]

@artsu i'll try and explain more if i can. the solar plexus is the body brain. intimately associated with it are the spleen, pancreas and colon. the spleen/pancreas meridian ends on the big toe so is affected by walking. there are many treatments that me/cfs folk cannot use due to poor grounding of energy through this meridian. the result can be the feling of being slightly winded, or more so, in the solar plexus. ive come across quite a few folk who experience this, some from food like too much starch, some from electro-acupuncture being too powerfull.

the solar plexus is what freezes during and allergic reaction too. walking makes it difficult to notice but defo can cause it too. ask questions im happy to expand. i understand it and can explain it sometimes. if your legs are good but your gut isn't healed the energy rising up your legs will hit your solar plexus stronger than if your legs were mopre tangled and less healthy, strangely enough. you don't want great legs if your guts are still struggling. its a bigger incongruity, if thats the righ word and makes senser?

if your digestion is spot on then you'll have surplus energy to send to explosive exercising.

 

[Artstu]

A good friend of mine encouraged me not to buy a mobility scooter, and She continues to encourage and motivate me to do the things I achieve. So in my opinion having someone encouraging you to achieve more is a good thing.

 

[manna]

A good friend of mine encouraged me not to buy a mobility scooter, and She continues to encourage and motivate me to do the things I achieve. So in my opinion having someone encouraging you to achieve more is a good thing.

that depends on whether they understand whats happening to your body. else its best intentions that could harm.

 

[Min]

A good friend of mine encouraged me not to bwheelchairsty scooter, and She continues to encourage and motivate me to do the things I achieve. So in my opinion having someone encouraging you to achieve more is a good thing.

Are you suggesting that those of us who can only get around using mobility scooters and wheelchairs are not motivated? Maybe you think the bedbound are even more lacking in motivation? Sorry, in light of the fact that myalgic encephalomyelitis is a neurological illness, not some sort of lifestyle choice,I find your post and boasting of your 'achievements' offensive.

 

[stridor]

@manna
stridor is a cross between Lord of the Rings and a very bad cold with lots of phlegm

Yeah, the colon is gone and my small intestine is hooked up to the rectum. This is called an ileorectal anastomosis and I am the poster boy for this operation. From a functional perspective, it is fine.

But I lost all the microbes that impact our health and well-being. By definition, it creates a lifetime of dysbiosis. The operation was elective. I had over 100 polyps and 25% were precancerous. I am TYMS++ which is the gene for DNA repair = a cancer gene. Worse, it needs 5-MTHF as a cofactor but I am also MTHFR C677T ++ and therefore have been short-changed on that my whole life. These 2 genes together are a bad combination (anyone else here have this?). So, just like Dirty Harry, it was, "Do you feel lucky punk?.....well, do ya?"

I have other gut problems and I am not sure how much of this is permanent. I don't absorb some things well - B2, mfolate and Fe - that I know about , but there will be others. Probiotics help but I haven't found one that I can tolerate since the operation.

The question you raise is whether I would make more progress if I did not exercise and of course, it is hard to say as I can not double-blind myself. But I have no PEM, I am getting stronger and have a general sense of well-being. My biggest challenge is figuring out when to stress-dose hydrocortisone with activity. I'm as inept now as when I started. By the time I figure out that I need to take more it is too late. My BP drops and I lose energy - and that's it for the day. But I don't want to take it unless I need to because I am worried about osteoporosis.

I have 5 hetero and one homo corticotropin releasing hormone receptor genes (associated with CFS). Also I have 7 homozygous SNPs for cortisol receptor sites (also associated with CFS). This means that my adrenals were working overtime as I needed higher levels of cortisol than a regular bloke. They were prime candidates for Hg poisoning.

My brain-fog is quite low at times (although not now as I write this, need my morning folate). Fatigue is now simply having less reserves than I would like. I get tired after a couple of hours of yard work and have to take a rest before I can continue. I can do 5 hours of fairly light work in a day. And I need to ....as after 4 years of inactivity my yard (huge) is dead and full of weeds. My beautiful gardens are overgrown nightmares....heartbreaking.

I can stand now for varying lengths of time but you know, at least 10-15 min without too much distress.

I am not sure what my final recovery will look like. Somewhat philosophical.... but I wonder if people who lose adrenal function ever truly can be considered fully recovered. I think that we can get to the place where we would not meet the threshold for the diagnosis of ME. I am likely there already. brad

 

[xchocoholic]

A good friend of mine encouraged me not to buy a mobility scooter, and She continues to encourage and motivate me to do the things I achieve. So in my opinion having someone encouraging you to achieve more is a good thing.

I had a freind make the same recommendation. That's when it dawned on me that she has no idea how our brains control movement.

I had ataxia 24/7 from 1990-2006 so from experience I know that brain dysfunction can impact our ability to walk. I appear to have had gluten ataxia since my ataxia vanished 1 year post starting a gf etc free diet and multiple symptoms including ataxia vanished at the same time.

I still had to rebuild muscles and those neuro connections that make walking feel natural tho. That took time since I was still ill / tired with celiac disease.

I still use motorized carts for shopping if I'm having a bad day. My OI makes shopping difficult because of hypoperfusion. It's nearly impossible to read a label when your dizzy.

I was trying to walk every day or so for the last 4 months but between pem and getting infections and mcs reactions any sustained progress is impossible. I have to regain strength after every period of bedrest. I can't see any marathons in my immediate future. Lol.

Tc .. x

 

[taniaaust1]

there was a time, about 10 years ago, when I was able to manage a tai chi class-- pre MCS. i think i attended about 10-15. after each class i would be fairly ill for about 2 days but better after that, as it was a detox feeling so an improvement. which i didn't clearly see that at the time. i think you benefit from some kind of energy share. the teacher would place new members in the centre of the classs, so they were surrounded. also at the end of the class we stood in a circle in a certain position and the teacher would adjust your hands slightly whilst inroducing or balancing some kind of energy in your system.

i just wish i had the stregth to complete a class now..or that id never stopped going,,why i did i don't know.. difference with tai chi is that it works on the spiralling energy of the universe and these suck and draw energy to themselves via being implosive (alkaline, anaerobic, cooling) as opposed to explosive (acid, aerobic, heating) exercise. the amount of aerobic exercise you do is dependant on reserves of energy. my experience is that the ability to do aerobic stuff, like hill walking, comes last and should be avoided tilll your certain everythings cleared. i can G.E.T. myself upto being able to walk further but it is never without negative affects on my body, namely much pooorer digestion.

i have found that once i have broke a sweat,generally at about 200 metres, then ive lost digestion for the day. better to take that little energy and send it inwards, via tai chi, to the bones and organs than just purely outward (aerobic explosive) to the muscles alone. i once read of an me/cfs sufferer who, it was claimed, was healed whilst attending the class of one fairly notorious tai chi "master".

there was one tai chi organisation, in the uk, who were working with m.s. sufferers in some way and were claiming cures in some instances. she told me this over the phone, nice lady. knowing what i think i know about it i think it has great potential, dependant on your teachers level and skill and you're ability to stand for half an hour. if you can't some teachers practice healing too and can simply introduce the energy as if you did and your body uses it as and where it needs it. i have seen other articles on tai chi and its great affect on movement disorders. but you have to be able to complete the class which makes it out of bounds to most/many

I was doing Qi Gong and Tai Chi for several years before I got ME (I was also doing yoga classes too), I was still doing these when I got sick and did continue it for a while. I had to stop doing it as I suddenly, it seemed to have someting to do with the ME, developed a huge painful big knot in my back during theTai Chi class. I could then no longer do the movements without a lot of pain and had restrited movement, whereas I was previously extremely flexible due to all the yoga etc (I believe this knot n my back iwas caused by an energy block in my system which was made worst by the drawing of enegy in during the Tai Chi.. due to this illness my energy wasnt flowing right and that caused me issues).. This took several years to go away even thou I had weekly massage (I had a friend who was a massage therapist) trying to fix this issue).

Anyway.. I can say for me that TaiChi didnt help but just caused me issues from doing it. (I also had to give up yogi as I got far too ill to do it, it got to the point where I could do less then the 97 year old in my class without getting quite ill).

I had a very experienced, powerful Grandmaster (he taught around the world at times) as one of my Tai Chi teacher at times. He worked on my energy system but it didnt help me at all. He said I was carrying too much wind energy. I did so much energy stuff trying to get better (also had a lot of reiki sessions as in reiki bakes with several people working on me at once) but none of it helped me at all.

 

[SDSue]

Yes do what you can but stay within your limits.

Oddly enough, I didn't say "I am not encouraging anyone to do more than they can. It happens when it happens, if it happens. It's OK to hope."

I said all that other good stuff lol, but not that

 

[taniaaust1]

I ponder that thought often. It's a difficult one to answer. I believe the exercise has lead to the improvement.

Another way of looking at it is to think of all the people who have been ill for a long time, they don't participate in exercise but remain ill.

That's a bit of a twisted way of seeing things. Quite possibly had they exercised, they could be even illner and at a worst level then their current remaining ill. Many here can vouch how they exercised and due of that became as ill as they are today.

 

[taniaaust1]

That ceiling is very important. Keep below it for a very long time, with very carefully timed little steps to push it a bit higher. I spent 4 years banging my head on that ceiling thinking I would never ever push through it. It's moved now, but I'm very aware it could start coming back down at any time.

if I start banging my head on that ceiling, I end up worsening my ME. Trying to push is very bad in my case and can easily put me into hospital, all it takes is one lot of pushing may do it.. its really like playing roulette when I start doing that.. I really need to stay well below my ceiling so not to risk another ambulance trip. You are very lucky if you can keep "banging your head on that ceiling" without it having very bad consequences.