Question for former athletes/fitness rats

[Old Bones]

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.

@u&iraok I also loved the water, and was addicted to the endorphins from swimming lengths. My young nephew called me "Auntie Fish". Post-ME, I tried doing arthritic aquasize classes. The longer I tried, the more uncoordinated I became, until my brain could no longer direct my arms and legs to do the moves. It was embarrassing. I was mid-30's, the other participants in their 50's through 80's. I started feeling nauseated just walking into the fitness facility, and wondered if sensitivity to the pool chemicals was also a factor.

 

[Aerose91]

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

I always walked around at about 7% bodyfat and right before getting sick i was at 4% because i was leaning out for a fitness video. In the first year of illness my bf shot up to 22%, more than quadrupling and nowhere remotely near where I'd ever been before. I weigh a little less though because i lost a lot of muscle

 

[Aerose91]

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 rewanda 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.

I was the same as you. My first sign of illenss was adrenal fatigue but with enough caffeine and determination i was still able to continue work as a personal trainer, tho my workouts were cut out.
That continued until it got so bad that i collapsed and had to leave work. Funny enough, that wasnt what caused ME for me, i was given Ativan for sleep and had such a bad reaction to it i went into withdrawal and that's what broke my body down into ME.
Did your illness start with the vaccinations?

 

[hvac14400]

I always walked around at about 7% bodyfat and right before getting sick i was at 4% because i was leaning out for a fitness video. In the first year of illness my bf shot up to 22%, more than quadrupling and nowhere remotely near where I'd ever been before. I weigh a little less though because i lost a lot of muscle

so there must be something with our mitochondrias then - am having troubles to diet down too now, despite being in a severe caloric deficit. it looks like we can't effectively use fat as fuel - that can explain why we fatiguing so fast with low power aerobic work, heck - with any type of work.
i personally feel as if this process of burning fatty acids for energy is capped very badly - for example i can walk slowly very long time, but as soon as i increase speed a lil i start feeling bad and may even crash.

 

[pogoman]

@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?

Not as bad as yours with muscle wasting but pain and fatigue way beyond what could be explained by age or DOMS.
But yeah my arms and hands would get weak and I would have to switch between, very bad pain and stiffness hours later after exertion.

Doctors did lab tests a few years ago and found high CPK but no inflammation.
Did muscle biopsy and I was told untreatable noninflammatory myopathy and just given pain meds.

A year and half later I asked for a copy of the biopsy results and it showed necrosis and atrophy and was interpreted by UCLA as a toxic myopathy.

Demanded a second opinion and head of neurology dept agreed it was autoimmune related and started me on IVIG in December.
Theres a newish myopathy known as Necrotizing Autoimmune Myopathy, usually triggered by statins and fibrates.
No inflammation but its autoimmune mediated.

The IVIG has helped, I found out I had to increase the riboflavin dose each day (from 200 to 600ish mgs) and I've started light exercises last week.
Also not having to take pain meds daily like at beginning of the year.

 

[kristysmiles]

I was a three sport varsity athlete in High School. I played Soccer, Swimming, and Tennis. Also, played club Ultimate Frisbee, Soccer, and Tennis. Played Tennis in college, and then joined the military and took up running. I was doing 5-12 miles a day (5 days a week) and some light weight lifting prior to getting sick. I'm one of the lucky ones, since I can still do some mild activity, but the drop from where I used to be was significant.

My onset was viral, similar to mono, but never confirmed (the number of negative mono-spots I'm likely to believe it wasn't mono).

 

[ahmo]

I'm adding this, rather than editing my original post. During the past couple years of working w/ methylation, I attributed my poor aerobic performance due to long-term low thyroid and low B12. In the context of this thread, maybe there's something much more fundamental.

Over the years as a well person, I frequently had breaks in my exercise routine, particularly due to low back flares. There was never a question about me pushing through limitations and deconditioning, I just persisted. However now is so different, there is no overcoming my profound limitations. I'm acutely aware of the benefits of getting up and moving, and body simply cannot comply.

 

[Strawberry]

Wow, this thread is depressing!

I did gymnastics all my life and through high school. When I was about 23 I had to give up snow skiing as no matter how hard I tried the 2nd time down the mountain would put me in the lodge with jello legs for the rest of the day. I also had to give up water skiing around that time because my legs would turn to jello. I've even had to give my Seadoo to the kids as I can no longer ride on that without severe jello legs. When I was married, I tried weight lifting with my then husband, and one rep set to his two rep sets was still not enough recovery time. He made me quit lifting knowing something was not right. So in a nutshell I have had stamina issues for 30 years, and haven't gained muscle from anything.

I think it was @Old Bones that said cleaning one square foot of countertop was too much? I am now like that also. Up until about 4 years ago I could push through the fatigue somewhat and continued an active life, although I considered myself a "skinny marshmallow" as I LOOKED fit, but my muscles were soft, unlike when I was in high school and my leg muscles were rocks. Now I can't stand for more than 30 seconds, so I sit on a barstool to do any cooking or washing dishes, and even that is too exhausting on most days.

I also have issues with VERY tight hamstrings? Anyone else with that issue? If I sit with my legs stretched out, I can barely touch my knee caps with my hands outstretched. Forget my toes! I tried yoga and stretching, and never gained ANY flexibility back. Remember, I was a gymnast for at least 12 years...

 

[rosie26]

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

I lost a lot weight at my severe onset and have never gained it back since and it has been 15 years. Whenever I did put on weight and get close to 60kg my ME would flare up badly and I would lose the weight gain again.

I have managed to get over the 60kg mark as of last year but I think menopause has given me the bit extra weight and I know my ME doesn't like the extra weight much but I seem to be adjusting to it over time. My healthy weight before I fell very sick was around 65kg and for my height that weight was ideal.

 

[rosie26]

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.

Yes, the flu virus that took me down with severe ME was a 'heavy weight' kind. I know the person who gave it to me as well. A week before I got it off him he dragged himself out of his bedroom and told me he had aching bones and said he had flu really bad.

He recovered well but for me I went down a week later and all hell was breaking loose in my body - the flu and a ton of other scary neuroimmune chaos like I have never experienced before in my life and it continued in the stuck position for a good two years before I started to notice very subtle small improvements.

 

[u&iraok]

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 rewanda 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.

I'm sorry you ache to run, I don't care if I never exercise again, but that's sad, too, not wanting to do the things you loved because the aversion to them has created a permanent 'Pavlov's dog' reaction.

I have a fear of leaving the country and having to get shots because I know I would be so messed up.

I'm sure everyone has that 'if only I know now what I knew then' feeling.

 

[hvac14400]

I also have issues with VERY tight hamstrings? Anyone else with that issue? If I sit with my legs stretched out, I can barely touch my knee caps with my hands outstretched. Forget my toes! I tried yoga and stretching, and never gained ANY flexibility back. Remember, I was a gymnast for at least 12 years...

not to the same extent, but i have such problem too. the hammies seem not wanting to stretch at all, despite all squats, deadlifts and static am throwin at em for years

 

[Old Bones]

I don't care if I never exercise again, but that's sad, too, not wanting to do the things you loved because the aversion to them has created a permanent 'Pavlov's dog' reaction.

@u&iraok Over the years, I've often referred to my attempts to do previously-enjoyed sedentary hobbies as "aversion therapy". I start off excited and motivated, but it doesn't take very long before the extra effort results in tears, and I come to hate the activity. This surprises me, since I've generally remained pretty good-natured despite the challenges of ME.

The most embarrassing time this happened was when I took on a sewing project to keep me from feeling left out while my husband was vacationing with friends and family overseas. I rapidly reached the "Pavlov's dog reaction" stage you described, and when he phoned from some friends' home in Germany, I burst into tears. I started wailing about my horrible life, every word broadcast to a roomful of people on speakerphone, I later learned. More evidence to them that hubby made the wrong decision in marrying me! No wonder they think I'm permanently depressed rather than ill.

I still want to do my hobbies, but have learned that PEM doesn't discriminate between necessary and enjoyable tasks. When the aversion (which includes resentment towards people I like/love) starts, I know I've already exceeded my limits and it's time to stop.

 

[u&iraok]

@u&iraok Over the years, I've often referred to my attempts to do previously-enjoyed sedentary hobbies as "aversion therapy". I start off excited and motivated, but it doesn't take very long before the extra effort results in tears, and I come to hate the activity. This surprises me, since I've generally remained pretty good-natured despite the challenges of ME.

The most embarrassing time this happened was when I took on a sewing project to keep me from feeling left out while my husband was vacationing with friends and family overseas. I rapidly reached the "Pavlov's dog reaction" stage you described, and when he phoned from some friends' home in Germany, I burst into tears. I started wailing about my horrible life, every word broadcast to a roomful of people on speakerphone, I later learned. More evidence to them that hubby made the wrong decision in marrying me! No wonder they think I'm permanently depressed rather than ill.

Oh No! This sounds like something out of a movie!

I still want to do my hobbies, but have learned that PEM doesn't discriminate between necessary and enjoyable tasks. When the aversion (which includes resentment towards people I like/love) starts, I know I've already exceeded my limits and it's time to stop.

I've gotten so I have the aversion before I do anything! It's what led to me being addicted to video games. I'd think about things I had to or maybe didn't have to but should do and I'd get overwhelmed and play video games instead. When I did something difficult I would just think about how soon I would be going home to play video games.

Finally I just had to face down my fears/aversions and tell myself the aversion was worse than the activity. And take lots of calming supplements and teas.

I also look at the bright side-to an extent, the aversion is that inner voice saying, don't do it, rest. As a result I am very good at pacing and telling people no.

 

[Amaya2014]

Looking through these posts is amazing. I think these are stories to be told about the face of ME/CFS. I don't have the know how but I envision a video of real sufferers sharing the tremendous toll of this illness.

Maybe it's already out there but I've only seen videos of one individual at a time. I'm thinking of a video that shows ME/CFS is no respecter of age, sex, race, class, etc.

 

[Aurator]

Looking through these posts is amazing. I think these are stories to be told about the face of ME/CFS. I don't have the know how but I envision a video of real sufferers sharing the tremendous toll of this illness.

Maybe it's already out there but I've only seen videos of one individual at a time. I'm thinking of a video that shows ME/CFS is no respecter of age, sex, race, class, etc.

The challenge, really, in terms of achieving the desired impact, is to convey the sheer extent of the transformation in formerly very active people's lives, and the reality of living with that transformation. Showing a lot of footage of people lying on sofas or in bed interspersed with the odd still image of the person in their athletic heyday is a bit low on dramatic clout.

It's not only the numbers of patients affected that needs to be got across, it's the detail - the sudden lapse from the peak of physical and mental fitness to a state of impotent decrepitude, the loss of career, money, friends, hobbies, social life, choice, pleasures of all kinds, not to mention the everpresent pain or discomfort; in essence the utter extinction of your former self. And then the unending time that this goes on for.

The detail is the thing few people outside of the world of ME have any insight into. This lack of insight is one of the reasons for the general lack of compassion and why we've had inappropriate treatments foisted on to us for so long by people acting with an autonomy that has been unconstrained by any appreciable level of public disapproval beyond that expressed by the patient community themselves.

 

[Amaya2014]

@Aurator I definitely agree that it would have to be done right. Creativity, sensitivity, accuracy...plenty of landmines to undertake such a project.

Within individual stories I see themes; the athlete struggling to walk, the professional losing years of education and career achievements, the teenager whose life is severely limited before truly starting, the skeptic who dismissed the illness until it hit them or a close one, the newly ill navigating the medical circus to find a diagnosis...

Even if it was only a commercial run during May I'd love to see the narrative of ME/CFS rewritten in people's minds. In these days of YouTube there's probably an even cheaper way to reach people.

I'm rambling on...it was just a thought (for now)

 

[Chrisb]

What I find wholly unforgivable is that there is a large group of us whose experiences entirely refute the notion that failure to exercise is causal in the illness. The fact that we are wholly ignored and our experiences denied is a clear indication of a lack of good faith on the part of the pseudoscientists.

After 35 years I still cannot see a picture of a mountain without wanting to climb it, even though the stairs sometimes provide a challenge.

 

[u&iraok]

What I find wholly unforgivable is that there is a large group of us whose experiences entirely refute the notion that failure to exercise is causal in the illness. The fact that we are wholly ignored and our experiences denied is a clear indication of a lack of good faith on the part of the pseudoscientists.

After 35 years I still cannot see a picture of a mountain without wanting to climb it, even though the stairs sometimes provide a challenge.

I know, what is it with people thinking exercise cures all ills? Even doctors I respect push it on us. I didn't even know that was such a big deal. When I was into it I didn't notice others were that much. Are we that much of a fitness culture? Is that why we love the Olympics? I wish they would look at the former athletes who really wish they could go back to their sport.

I use the analogy that many who have Lupus can't be in the sun. The sun is good for you in moderation but not for them. Exercise is good for the average person but not for us.

But it's not the best analogy because a lot of people think no one should be in the sun without SPF 10300...or near enough to that!

 

[mkbretsch]

Former long distance runner and avid cyclist. Backpacker. Weight training user.

Never fast. Tended to fat since puberty. But very active up to loss of health in late twenties or early thirties. I, too, wonder if over training provokes these problems to some degree.

I do have methylation defects. Over training burdens that cycle.