Question for former athletes/fitness rats

[ahimsa]

... [the BPS school does not understand that] sick athletes DON'T fear "exercise", but on the contrary feel utterly bereft that they cannot do the one thing they most want to do. It's like telling a mother who has had her child forcibly taken off her and doesn't know when she'll be allowed to see it again that her anguish is due to her not wanting to see her child.

What a great image to describe what we're feeling!

I actually feel this anguish even more about losing my job than I do about losing my ability to go hiking, running, lift weights, etc. And since my desk job was completely sedentary, no aerobic ability necessary, then the whole deconditioning argument makes even less sense.

 

[BurnA]

I had sudden onset over three years ago after contracting a URT, which I never recovered from.

Just wondering if you associate training with the URT infection with your onset ?

Same question to any of the triathlets, cyclists and runners who developed an infection prior to onset.

I went cycling one evening with 'just a sore throat' which developed into the worst sore throat of my life which developed into ME/CFS.
I often wonder if I had rested during that initial sore throat phase if things would have been different. Obviously I'll never know but would like to hear others stories.

 

[Old Bones]

When the BPS school start talking about deconditioning and "fear avoidance" being factors in our illness, I have to question whether any of them have ever had any experience of what it is to be an athlete and have the first idea to what extent sick athletes DON'T fear "exercise", but on the contrary feel utterly bereft that they cannot do the one thing they most want to do. It's like telling a mother who has had her child forcibly taken off her and doesn't know when she'll be allowed to see it again that her anguish is due to her not wanting to see her child.

When lies of this magnitude become entrenched and therefore hard to combat, they can make the afflicted feel very angry indeed.

@Aurator This is the best analogy I've read disputing the commonly-held belief that fear of exercise hinders treatment in ME patients. Thanks for so eloquently putting into words how we (former athletes) feel about the loss of one of the major joys in our lives.

 

[ScottTriGuy]

Just wondering if you associate training with the URT infection with your onset ?

Yes, during mid-July 2012 I had a sore throat for about 2 weeks, but since I didn't feel sick, I didn't cut back training (for an Ironman) or go to the doctor - then I had about 2 weeks without the sore throat - then August 9 I woke up sick.

 

[BurnA]

Yes, during mid-July 2012 I had a sore throat for about 2 weeks, but since I didn't feel sick, I didn't cut back training (for an Ironman) or go to the doctor - then I had about 2 weeks without the sore throat - then August 9 I woke up sick.

Not too dissimilar to me. I trained with my sore throat. Then rested when it got bad, everything cleared up so i went back training and then Wham! Woke up after a gym session the night before and couldn't get out of bed.

 

[AndyPandy]

Before ME/CFS:
Snow skiing
Water skiing
Basketball
Squash
Tennis
Golf
Hockey
Volleyball
Touch football
Daily gym workouts
Bootcamps
Weights
Aerobics
Bush walking
Netball
Indoor cricket
Cycling
Running
Swimming
Body boarding
Softball
Bowling
Kayaking
Fishing
Yoga
Heavy Gardening

After ME/CFS:
Wheelchair outings propelled by someone else
Few steps of walking
Few yoga stretches
Bit of snipping in the garden

The sense of loss is almost overwhelming.

Sending love and best wishes to all of us who struggle with the difference between our former active sporty lives and our present lives.

 

[pogoman]

I was much like many of you (weight lifting and running) but the last two decades I slowly lost strength, pain increased and unable to build muscles at all.
Had to stop with the weights a few years ago because of PEM symptoms and the pain was very bad.

But I don't have ME/CFS but a muscle myopathy diagnosed by muscle enzyme tests (CPK and aldolase are high for me), muscle biopsy and electromyography testing.
So I wonder if any of you have had these done?

 

[Richard7]

I was no athlete, but In early 2003 I was walking 50-75km each week and swimming for a couple of hours too.

To my mind I had issues with climbing, in 2002 I was climbing out of Vikos Gorge in Greece, and found that I reached some sort of limit and then had to stop for a few seconds walk for maybe 10 or 20 seconds and pause again, and so on. And come to think of it I had the same problem climbing up from jerusalem bay (sydney) in 2001. But these were after my recovery from pneumonia in 2000 which I think may have represented a remission from CFS rather than recovery from pneumonia and antibiotic-induced dysbiosis.

When I described the issues with climbing to a biochemist in mid 2003 he suggested that it was a creatine production or transport problem. He is a friend of my mother's and had done some work on my grandfather and noted the same problem so I guess nuclear DNA not mtDNA.

 

[rosie26]

I was a gardener before getting sick and I could easily go at it for 10 to 12 hours a day. Now doing 20 minutes exhausts me. I used to do a lot of digging and couldn't imagine going at it for hours at a time anymore. Five minutes and I'm done.

Gardening is a tough one. It's one of the worst things I can do with this illness. It can bring on a really bad deterioration. I still get out there though but I'm really careful about what I am doing and how long I spend out there.

I was always active before I fell sick. The only time I laid down during the day was when I had a riveting book that I couldn't put down.

 

[valentinelynx]

Was a swimmer through high school, worked out 5 hours a day 3 days a week, and 2 hours a week 3 days a week. Then Iet it go until a few years before I got sick. Before I got sick, I was dancing (ballet classes mostly), with 2 hours of class 3 days a week. In the second best shape of my life.

Sudden onset. Illness happened suddenly one day during spring break. That was during the time when I was back in school at community college doing pre-med coursework (had graduated with my BA 7 years earlier). I was taking classes from 8 AM to 8 PM with the dance classes in the middle. Weighed 50 lbs less than I do now.

Returning to dance class about 2 weeks after getting sick - suddenly I was severely out breath doing the aerobic part of class. It was as if I had lost my conditioning by taking a 2 week break. Through the power of denial, I actually believed that's what happened for years - kept trying to "get back in shape," and never succeeding, because the exercise would make me feel ill (immediately - I pushed too hard, so I wouldn't have notice PEM, because I pushed so hard I got immediately worse).

I was a middle-distance athlete - butterfly and IM were my best events, the 200 yard/meter or 400 yard/meter. Not the sprints or the long-distance. Both aerobic and non-aerobic fitness were required.

 

[hvac14400]

so you guys are losing or gaining bodyweight after gettin sick? or it's going both ways, as always.

 

[Richard7]

definite increase in weight. In the first 18mnths I went up almost 20kg (109 - 128), then I got a bit better dropped about 10 kg, then worse and then much much worse and went up to about 140. Note my estimated lean mass was about 93 kg, so I went from about 15% body fat to 27% to 33%.

 

[hvac14400]

I went from about 15% body fat to 27% to 33%.

at the same caloric intake, like your metabolic rate (or TEE) dropped down considerably?

 

[NL93]

I weigh about the same, but lost muscle mass and gained fat.

 

[Richard7]

@hvac14400

I don't really know. At first I was still able to walk a fair distance (say30-40km/wk) but had severe PEM, chronic migraine and dysbiosis (the explosive runs) lots of muscular pain and lots of trouble thinking. I was roughly following the zone diet, so I was probably at about the same intake for about the first year, or at least on it on the days I was reasonably coherent.

I can remember being ravenously hungry and unsatisfied by eating, which has been a pretty common problem, and makes sense as I was not producing enough acid, bile or enzymes. At the time I was chewing vitamins and doing everything of what I could remember being advised to do ( which why I was walking myself into PEM - a physio had advised me to walk to sort out some back issues I was having.)

But I was also getting fecal pathology done and then taking antibiotics and then probiotics to try to get the microbiome sorted. I must have massively reduced my microbial diversity and that would have been part of the reason for the first increase in weight.

I know that in the last few years there have been extended times when I have been on very low cal intakes and not loosing much weight. A year ago I was on about 1600 KCal a day, a theoretical 1100 K cal deficit. But my auxiliary temperature was mostly around 35C/ I think it went down to 34.7 and up to 35.4 or thereabouts. I seemed to be at about maintenance according to my doctor. So metabolism has been an issue.

But the second increase in weight started with pizotifen, which stuffs up your response to hunger. You don't feel hungry for say 16hrs and then you are ravenous, so hungry it hurts and it does not stop when you eat but can continue for half a day and keep you up at night etc. If I had not had chronic migraine I don't imagine I would have ever taken it. But even on Pizotifen my weight increase was manageable I was still wearing the same jeans - though they had gone from loose to tight.

The real change came with another round of attempts to get my gut back to normal with antibiotics and changes in diet. Which was in retrospect a bit of a disaster weight wise and healthwise. My abilty to walk just fell apart and my weight ballooned.

It is a little hard to remember the chronology, but during this time issues with severe POTS meant that I could just barely walk to the service station to get a sausage roll or pie, or across the road to get yoghurt or cheese or salami and bread and vegetables, but I could not make it down to the supermarket for a better range of food, and had trouble standing long enough at the stove or bench to make a proper meal. In truth I had trouble standing long enough to make a sandwich. So my food quality went way down.

So maybe the initial dysbiosis, the things done to rectify that dysbiosis, the reduction in energy expenditure some migraine drugs, and the reduced ability to eat my normal whole food diet were to blame.

And I am not sure what it is, but I can still get into situations where the need to eat carrots or other essentially healthy foods is overpowering so I end up eating 3 kilos of carrots and 4 kilos of apples over the weekend (the weekend before last), or 16 kilos of oranges and some smaller but still ridiculous quantity of bananas in a week (November last year). I do not know if these are to do with dietary needs or stuff ups in regulatory systems.

 

[Aurator]

Just wondering if you associate training with the URT infection with your onset ?

I'm unsure what to think, really. When I came down with the virus I did no training for two weeks, and though I felt tired when I first when out on my bike again I was able to ride virtually at my pre-illness level the second time out.

I didn't feel quite right, though. I remember I had a very dry mouth and throat, and felt unusually hot and then unusually cold as the ride progressed. It was after coming back from this second ride that the illness really took hold. I was never able to perform at anything like the same level again, and each time I attempted to I was physically knocked for six.

The intitial virus was a particularly nasty one, I remember. My wife had had it before me, and, disturbingly (knowing what I know now about the way ME affects people) she chose to lie curled up in a darkened room for about a week, unwilling to speak and reluctant even to open her eyes. I have never seen her so prostrated by illness. Fortunately she made a full recovery, but she was still complaining of symptoms of the virus more than three months after getting it.

Like so many others, I'm still waiting for my recovery to happen.

 

[hvac14400]

@Richard7
so basically your weight was easily around 110kg or more at about 1600kkal and your body temperature dropped waaay down.
while i am struggling to gain mass above 100kg at 4500kkal, stuffing myself with food and constantly feelin hot from processing all this calories.
yet we both have PEM, CFS and so on - that's f#kin crazy.

 

[u&iraok]

I was a huge fitness tape freak. Intermediate/Advanced. I had hundreds. I still can't bear to get rid of some of them. I miss previewing them and ordering them. I exercised for an hour 3-5 times a week my entire adult life. I loved getting strong (for me) and working on balance.

I also rollerbladed for years and LOVED it. Old Bones reminded me of how I used to love cross country skiing.

What I think is sad, too, is I loved being in the water and swimming some, now I don't. I would also go in, no matter how cold. Now I don't care one way or the other to go in the water.

 

[Old Bones]

But I don't have ME/CFS but a muscle myopathy diagnosed by muscle enzyme tests (CPK and aldolase are high for me), muscle biopsy and electromyography testing.
So I wonder if any of you have had these done?

@pogoman I have severe muscle wasting that has gone well beyond what could be attributed to deconditioning, or aging. It takes months for the weakness that develops from using my arms more to resolve. During this time, if I'm stirring something on the stove I have to switch arms every third stir, and my arms ache with fatigue wiping a piece of kitchen counter only a few feet square, or sliding hangers on a clothes closet rod. Does this sound like what you experience?

With a diagnosis of muscle myopathy using the tests you mentioned, can anything be done to improve the condition, or is the value of testing only in getting confirmation that something is abnormal?

 

[Hell...Hath...No...Fury..]

The whole fear of exercise bull is possibly the most anger inducing lie of the many lies about us.

Its been 18 years and i still ache to run, the analogy used earlier about mother and child is spot on and serves to highlight just how ridiculous the fear and avoidance idea really is.

I was a fitness instructor and life guard. I ran competitively, sprinting and long distance. I did gymnastics, walking, hiking and mountain climbing. Walked across England and Ireland totalling 400 miles.

I always feel i was a mixture of slow onset AND fast onset. Slow deterioration from a virus over 6 months but still managed to drag myself to work in the gym through sheer grit and determination while working all hours covering for other people who were sick.

Then I planned on taking some time out to travel to Africa; Uganda and Rwanda for 6 weeks to see the mountain gorillas. Thinking the break might do me some good.

Turned out to be the worst decision ever. Had a list of vaccines i needed, and renewed tetanus first... That was as far as i got. Arm reacted to jab straight away, and within 2 weeks lost the use of my legs which then spread to paralysis head to foot for a couple of years with agony head to foot.

I never had any problems aerobically, though sprinting was always my preference over long distance. I had a few bouts of exercise induced asthma on long runs but thats about all. I'm not an asthma sufferer.