Wow Drew, this sounds so familiar. It actually thought I was reading one of my own posts on the subject. The only difference for me was that I started with chronic insomnia that isn’t still a problem nearly 6 years later. In my case, I have still not been able to return to any kind of training. I have flown to several states to talk to a couple of experts in this field and although they recognized all the tell tale signs in my blood work, neither has been able to corrrect the problem for me.
I have tried about every supplement that has ever been suggested for Adrenal Fatigue/Chronic fatigue etc, to no avail. If I even try to elevate my HR above about 115, I am guaranteed a night of no sleep. Two different lactate tests have shown that I know may large quantities of lactate at HR as low as 120 bpm. Walking is fine and that’s how I get my exercise nowadays.
Feel free to ask more questions or pm me for details
Best of luck

Have you tried or thought about Intermittent Fasting? What's your diet like?

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http://www.sfuelsgolonger.com

So I took an entire month off, not even so much as going for a walk, and there's not even a hint of recovery. HR avout two full zones higher than it should be, no power/endurance, and my legs are on fire after 20 miles at a slow pace.

Is there a possibility that this is long term and/or permanent? Besides the fact that I love cycling and exercise, I have a fortune invested in it and really don't want to go sell all of it.

Yes, it can be much longer. I had a serious case of overtraining that took 2-3 years to recover from. But in my case, my recovery heart rate was about 40 bpm higher than when I was healthy whereas my max heart rate in training was about 70 bpm lower than healthy (so the range within which my heart operated was very narrow). Also at my worst, I could barely ride a mile. There's a 2% false flat uphill road near my house and I couldn't ride half a mile of it uphill before my legs were dead. Before this mess started I was dreaming of becoming a pro cyclist but this overtraining killed it. (It also took a long time to get a proper diagnosis which I eventually got from a leading university professor in exercise science & chronic fatigue in Brussels).

Are you saying 2-3 years of no exercise?

2-3 years to make a full recovery. I did very little for about 6 months; then gradually started riding my bike again but only short distances and no high intensity. I was told beforehand I could have needed a 3-4 year recovery, but it was more like 2-3 years instead.

Did you seriously run 20 miles out of the blue and expect it to not be a terrible experience?!

Bike, not run. I couldn't run 20 miles with someone else's legs on my best day.

Doh - that makes sense! Hope you recover well!

Hey folks,

I see I last replied Feb 12th in 2015.

I can hear the tone of expected recovery in my post. I could not have been more wrong.

I got much worse shortly thereafter, sliding into housebound by March 2015 and heading quickly toward bed bound. It was very frightening to deteriorate so quickly, triggered by a what felt like a simple head cold.

I can currently walk slowly up to 15 minutes on flat ground if I'm not carrying anything. I cannot use my arms for anything (like snow shovelling, carrying groceries). On a good day (today is not one of those), I can walk up 2 flights of stairs in a row.


You may find the 'metabolic trap' hypothesis of this researcher (Dr Phair) interesting as it provides explanation why some folks get 'stuck' in this state (and would fit with why I twice totally recovered):

...figuring out answers to complex biological questions is what he does for a living. Phair is an engineer and biologist who’s made a career out of understanding the functioning of complex systems. Phair’s company – Integrative Bioinformatics – uses a process called mechanistic kinetic modeling, which allows researchers to test complex hypotheses against experimental biomedical data. The mathematical descriptions of those systems that kinetic modeling creates allows researchers to assess the dynamics of those systems; i.e. to describe how they work and how they can be changed.

As Phair dug deeper into the possible causes of the weird data, a “metabolic trap” – a kind of biological sinkhole – opened up before his eyes. Once the process – which involved amino acid oxidation – started, he saw no way for an ME/CFS patient to get out of it without outside help (e.g. a treatment). Looking further, he and Davis realized it could conceivably explain some fundamental symptoms in ME/CFS.
Since then, he’s been creating model simulations to test his hypothesis. Thus far, he’s created kinetic models of the central metabolic systems in the body (mitochondrial electron transport chain, TCA cycle, fatty acid beta oxidation, amino acid oxidation, glycolysis and pentose phosphate pathway, purine synthesis and degradation, and NAD synthesis).
Dr Phair is engaging with patients on this thread if you're interested.

I have heard good things from quite a few friends about the doctors at this clinic, but have not been there myself.

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Advocating for research & treatment for Myalgic Encephalomyelitis (ME).
http://www.meaction.net/about/what-is-me/

"Suck it up, Buttercup"
(me, to myself, every day)

Did you see a normal doctor for your symptoms? Sounds really serious.

 

Unfortunately you can count the number of ME specialists on two hands. It is probably the most widespread (occurs in sporadic and epidemic forms) disease few have heard of - and the research funding is dismal so there are no treatments (but symptom treatment can improve quality of life).

I'm doing a bit better on a medication they give to folks that have had organ transplants...that's why I can walk for 15 minutes.

And I'm doing better than a lot of others that can neither walk nor talk, require a dark, silent room, and need a feeding tube to survive.

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Advocating for research & treatment for Myalgic Encephalomyelitis (ME).
http://www.meaction.net/about/what-is-me/

"Suck it up, Buttercup"
(me, to myself, every day)

Still didn't get your answer - did you see a NORMAL doctor for this? Or are you seeing a non-MD exclusively?

No, I only see MDs.

I have a ME specialist and my regular GP.

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Advocating for research & treatment for Myalgic Encephalomyelitis (ME).
http://www.meaction.net/about/what-is-me/

"Suck it up, Buttercup"
(me, to myself, every day)

Whew! Sounds good then! Just checking - you can go wayyy wrong if a normal MD isn't managing your main condition which sounds pretty debilitating. Does your main MD agree with that rare diagnosis?

Yep - though it is not rare, there are more than half a million diagnosed in Canada, but we have the highest rates in the world, just like with MS rates.

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Advocating for research & treatment for Myalgic Encephalomyelitis (ME).
http://www.meaction.net/about/what-is-me/

"Suck it up, Buttercup"
(me, to myself, every day)

Has anyone fully recovered but had their heart rate parameters (resting and max) permanently changed?

Recovery is rare, and I'm not aware if any of those folks had permanent damage or not.

I returned to full time training / racing during 2 remissions and didn't notice any permanent damage in performance. But those 2 first bouts were mild compared to what I've experienced since '14.

(Just fyi about heart rate - before I got ill I was enrolled in a long term cognitive study, but they would also take basic physiological measurements like weight, waist size, blood pressure etc and heart rate. When taking my heart rate the nurse stopped asked me to walk around the room, and then took it again, then asked me if I felt light headed - I didn't - she said my heart rate was 42 - and I had cycled 15 mins to get to the appointment. Shortly after that I became ill and basically house bound and the following year at the appointment my resting heart rate was 78.)

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Advocating for research & treatment for Myalgic Encephalomyelitis (ME).
http://www.meaction.net/about/what-is-me/

"Suck it up, Buttercup"
(me, to myself, every day)

Concerned I may be falling into that "never recover" group.

The more I completely rest, the more fatigued I become, and my libido has suddenly fallen off the map. For the first 10 months of this battle, I felt great in my daily life, I just couldn't exercise for the life of me. Now I'm finding myself unable to get out of bed and needing naps mid-day just to function. Had a sedimentation test run and it all came out normal, then had my T level re-checked, and it's still 300 points below average and 500 low for my age. Anyone else monitored their T while battling OTS and seen it drop significantly and eventually rebound?

Any updates Drew?

Unfortunately I've been getting progressively worse. I can generally ride a mile or two nice and slow before fatigue sets in and every pedal-stroke feels like the worst bonk you could ever imagine. Muscle soreness from even a short, slow ride is painful and long-lasting.

That being said, I believe I may be on to something....

Very detailed blood panels have shown no health abnormalities, other than testosterone being a couple hundred points low for my age range. Two months ago I was prescribed Wellbutrin; the third and fourth week in, I suddenly began to ride better, my heart rate began retreating to normal. I unfortunately had to stop taking it due to side effects and, at the time, wasn't connecting the dots. Further research has shown a wide number of cases of OTS being treated with anti-depressants; to that end, seratonin and other brain neurotransmitters are directly linked to mitochondria dysfunction and chronic fatigue. Having endured considerable life stress and even the death of a parent during these 14 months of OTS, plus life-long anxiety disorders, things are beginning to make sense. So I'm taking steps to address this as a mental thing, rather than purely physical. I'm hopeful there's light at the end of the tunnel, and if I can find a solution, I'll be certain to report back in the hopes my findings can help someone in the future that's in the same position.

I can relate. Coming off Zoloft, while good, presented other physical health issues. Besides helping with mental stress the Zoloft may have allowed physical ailments to occur/develop without my awareness OR the physical might have been latent/triggered by withdrawal of Zoloft. I say this because some of the physical ailments that I am dealing with now or dealt with could be treated with a Zoloft prescription today. Yet, I choose not to.

In retrospect, the Zoloft was needed to help me go to work to support my family during some years of stress. Years after the stress was gone, when I came off the Zoloft, physical symptoms appeared that are treatable by Zoloft. Kind of damned if you don't and damned if you do.

Hoping for better health for you. I'm about two years out since stopping.

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Indoor Triathlete - I thought I was right, until I realized I was wrong.

I definitely agree on the whole neurotransmitter thing. Several athletes inc Salazar have used them to help recover. A pro triathlete on this forum helped me with advice in my early days of attempted recovery. He was taking citalopram a SSRI, and it allowed him to function and do light exercise. I went on it for about 18 months. It allowed me to exercise by suppressing my HR during rides so I didn’t get really bad insomnia. Unfortunately, I hated the sexual side effects and stopped taking it. Once off it, all my symptoms returned and HR while riding was back high again. For me it seemed to be a band aid and not a permanent recovery solution.

I'm hopeful medication combined with help from a mental health professional will net long-term results. If not, I'll retire from cycling and take up fishing, I suppose.

Hi, this is such a great thread, one of the best I’ve seen online. Many people don’t want to share their story so hats off to you all. It took me 2 years to stop feeling ashamed and start talking about my situation. I ended up retiring because I trained through what I though was a simple tummy bug illness but my health got worse and worse. I eventually was diagnosed with underactive thyroid which may have been there all along, or as a result of several years of tough training. I’ll never know, but my experience has made me a strong advocate that we should not be ashamed to speak out because I suspect there are many many people out there struggling. I decided to set up a FB group especially for ill, injured, overtrained athletes to share experiences so if you see this post at the end of this very long thread, please hop over to ‘Bounce Back into Sport’ to carry on the conversation