Any cyclists with ME (Chronic Fatigue Syndrome) out there?

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hambones

Well-Known Member
Location
Waltham Abbey
This thread is of interest to me as my best friend has ME. He has been advised to have up to 30 minutes light exercise a day, and to definitely have some. He's not worked now for 8 years and I can see the life draining out of him as he gets more and more depressed with his condition. At 43 he's seriously wondering what the future holds and that it has to be more than where he's at right now.
 
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bobg

bobg

Über Member
This thread is of interest to me as my best friend has ME. He has been advised to have up to 30 minutes light exercise a day, and to definitely have some. He's not worked now for 8 years and I can see the life draining out of him as he gets more and more depressed with his condition. At 43 he's seriously wondering what the future holds and that it has to be more than where he's at right now.

That's very sad,
I cant speak with much authority ( or I wouldn't be posting for info here ) but during an hour with the ME consultant she confirmed that it can certainly go away on its own and I now know of 2 people who were lucky enough to be rid of it. I can't speak with any confidence yet cos it's the exercise bit that still puzzles me but I get the impression that the illness and its diagnosis and what's best for sufferers is still very little known and even less understood . 30 mins a day of even light exercise is totally the opposite of what I was told but what's on here contradicts that too?
The younger you are the better it seems. State of mind seems to be important too ie the more depressed about it that you get the more likely it is to get worse. However I can fully understand how he feels especially at 43.
 
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bobg

bobg

Über Member
Yes, but al78 says he is only 32, and his doctor hasn't tested him for anything, just saying it is normal. I don't think it is normal at 32...

Sorry Spinney, I misunderstood. Confusion if one of the symptoms :smile: You're quite right, most GP's dont even consider it -
However, FWIW there is nothing to test, if you have the symptoms and nothing else can be diagnosed then its ME ( it seems)
 

al78

Guru
Location
Horsham
al78 - You need to try to see a different doctor. If you used to be able to keep up with faster club runs without this fatigue, then obviously something has changed. It is not normal for you to feel tired.

Yes, what I need is a doctor who also has an active lifestyle :smile:

I think the reason I can't keep up with the fast club riders now is because they have got stronger over the last year or so, and I have not. They used to average 16-18 mph but now they are pushing 19, almost touching 20 mph average on one ride. No way I can keep that up over 45-50 miles.
 

BobWales

Well-Known Member
Thanks for the good wishes Ben. My only obstacle with buying an electric is in my head. I need to get over the fact that its cheating

It's not cheating to ride an electric bike. An electric bike simply prevents over-stressing the body. You get the exercise you want, not what the road dictates. You could say that putting air in the tyres is cheating!

These are getting good reviews: Juicy Bike and I can vouch for them helping me get cycling again.
 
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bobg

bobg

Über Member
It's not cheating to ride an electric bike. An electric bike simply prevents over-stressing the body. You get the exercise you want, not what the road dictates. You could say that putting air in the tyres is cheating!

These are getting good reviews: Juicy Bike and I can vouch for them helping me get cycling again.


Just got an e mail about your last post today Bob, hence the delay in responding. Co- incidentally, I've arranged a visit to Buxton for a test ride in a couple of weeks and I'm impressed with the reviews plus the chap I spoke to was very helpful. I tried one of my "proper" bikes last week but I wasa bit ambitious and spent the following 2 days on the settee.... how depressing but totally my own silly fault.
 

SuziRider

Regular
Location
San Jose, Ca
:smile:
Google 'Dr. Sarah Myhill CFS' to learn more about the cures for CFS/ME/FM. She is in the UK.
Dr. Jacob Teitelbaum, MD also has a good book on the treatment.
Dr.Montoya's CFS Center at Stanford Hospital in Palo Alto, Calif. also follows the late virologist Dr. Martin Lerner's protocols, too.
Most Natureopathic or Holistic doctors are also familiar with treating it. Most MD's are not.

The cause of CFS is mitochondrial dysfunction, meaning the Kreb's cycle is not producing enough ATP quick enough to fully power your cells. It is caused by low-grade semi-dormant viral infections and stress. Mine was triggered by a surgery.
Low ATP in muscle cells causes FM aches, or worst case: rigor mortis. Low ATP in the heart muscle causes low 'ejection' output, which is not measured by an EKG. Dizziness when standing up is the main symptom. Low brain ATP affects the hypothalmus and thus sleep, making deep 'recovery' sleep impossible.
Pushing oneself causes flu-like aches and fatigue for days afterwards. The body slows the thyroid to try to get you to take it easy. So a high RT3/Free T3 ratio (>5%) is a symptom of CFS, not a cause. Other thyroid tests come out normal.
Taking D-Ribose 3x/day (a pentose sugar), CoQ10 (Ubiquinol), Magnesium, Acetyl-L-Carnitine, Omega3's, and a good Vit/Min helps restore energy in 1-3 months.
 

SuziRider

Regular
Location
San Jose, Ca
I used to train at the gym 1.5 hrs 4-5x/week in my late 20's and was a nationally ranked lifter and bodybuilder. In 2001, I got hit by a car and after a bunch of surgeries, was tired, achy, & bedridden for a long time, but was back in the gym for rehab in 2007.
I figured out I had CFS when working out at the gym for an hour a 2-3 times a week always made my fatigue worse instead of better. I quit right after getting a national Masters (50+) Bench Press record and elbow surgery in 2011, but then started back once a week a year later. I retired from my job in 2014 when my fatigue was so bad I had a hard time making it through an 8-hour day.
I then I took up bicycle riding last year (2015) 3 months after another surgery (& thus flare up of CFS, again). I somehow also gained 25 lbs in 6 months, while eating only 1600 cal/day, low-carb. My heart rate would jump to 165 after going over an overpass on my 3 mile route, and not come down for 30 minutes. EKG, T-wave, chest Xray, etc were all normal. I started to ride the Lifecycle at the gym, keeping my heart rate low (110-120), and building up the miles for a few months, then eventually built up the miles outside. Now I can do 25-32 flat miles at 12 mph average with my morning riding club (a bunch of retirees 55-87 years old) 2x/wk, but doing more lays me up for a week instead of 2-3 days. I am just totally fatigued head to toe, but the legs don't ache at all since the riding itself is so easy for me, strength-wise.
I can not seem to progress past that level after 9 months of trying; My heart just goes too fast (165-178 bpm) on even minor 2% grades, leaving nothing for the hills. :whistle:
My cardio training books say it is normal to progress about 10% a week when starting out, so if you can ride 20 miles, then you should be able to do 22 the next week, and so on, which sounds reasonable. It worked for one month, then stopped. My 290 lb non-CFS friend was able to lose 30 lbs and ride 100 miles in 3 or 4 months, at age 63.
Nothing in my cardio training or CFS books addresses mid- or advanced level cardio training with CFS/ME, once PAST the Don't-Want-to-Get-Out-of Bed phase.

Good News is that in the month since I started on the D-Ribose in my coffee, etc., I am now sleeping 5.5 to 6 hrs a night instead of 3.5 to 5, and need only 2-3 days to recover between flat rides instead of 3-4. My cardio fitness goals are to do 1) hills with names, 2) a century and 3) multi-day ride someday.
With CFS, I have no idea if it is possible for me.

An electric bike, or a motorcycle, is one solution, but plenty of low HR (60-70% VO2 max) training 'as tolerated' with 1-3 days in between and frequent breaks is the better solution, per my research so far.
 

albion

Guru
Location
South Tyneside
I was diagnosed with ME and FMS about 10 years ago. I received absolutely the opposite advice. Well. I received a bunch of absolutely worthless advice.......The specialists will give you the best advice they can, but it's still your body and you're the one who has to live with it. They don't have a magical connection to see exactly how various activities make you feel. Only you know how you feel. They may offer drugs or cognitive behavioural therapy. They may tell you that some things are advisable and some things aren't. They may tell you some things will help and some things will make it worse. But only you can find out for sure if they're right or not........
Do what's right for you.

Sam
As said, do what is right for you. I am sad to say the specialist will often follow a very limited 'call centre' type script that simply does not cover your reality. More so now with ever more limited finances available.

They are happy to spend millions mis-diagnosing because they are safe and secure sticking to what their limited computer says.
Theres 25% of the population out there with a gene type which means they react to household moulds in the air, dusts and pollens yet they have zero interest in if or what this causes.

Mould will certainly cause most of these fatigue symtoms for some. No doubt other stuff does too and it is a massive shame that only those suffering are really looking for answers.
 

albion

Guru
Location
South Tyneside
BTW I can confirm the comments about building up exercise tolerance. 3 miles cycling at the beginning was far far harder that 80 mile rides months and months later.
 

albion

Guru
Location
South Tyneside
:smile:
..The cause of CFS is mitochondrial dysfunction, meaning the Kreb's cycle is not producing enough ATP quick enough to fully power your cells. It is caused by low-grade semi-dormant viral infections and stress...

There is likely many a cause, it also being quite hard to fully describe symptoms as a cause.
 

ray-s

Regular
Location
Carlisle UK
Reading this with interest. Diagnosed with stomach cancer last June and since then had 6 chemo and 15 radiotherapy sessions. Last radio was 8 weeks ago and been very tired and lethargic since then. Forcing myself to get out for walks but 3 days of walks in a row and I am knackered for about 4 days. Also been doing 1/2 hour sessions on the turbo, nice and easy which are ok but tried a harder session last weekend and still feel the effect of that 7 days later. Also since doing that the skin on my thighs and lower back has been tender for some reason. Spoke to my radio consultant who basically said I was wasting my time trying to get fit as it will take 3 months to get the radio out of my system and until then I was doing more harm than good. Might phone my GP on Tuesday about the tender skin.
Driving me nuts sitting around not being able to do anything and I have already considered an electric bike if I can't get back to enjoying a 50 or 60 mile ride so you have my sympathy.
 
Suzirider thanks for the info

I was affected two years ago!
By chance I took Magnesium, liquid iron and Vit/B's supplement.
And a new diet rich in Omega3's (fish 4 times a week) and a much better Vit/Min,s diet.
My stamina levels are now back to high, but now I eat just for Vitamins Minerals balance.
 

SuziRider

Regular
Location
San Jose, Ca
Reading this with interest. Diagnosed with stomach cancer last June and since then had 6 chemo and 15 radiotherapy sessions. Last radio was 8 weeks ago and been very tired and lethargic since then. Forcing myself to get out for walks but 3 days of walks in a row and I am knackered for about 4 days. Also been doing 1/2 hour sessions on the turbo, nice and easy which are ok but tried a harder session last weekend and still feel the effect of that 7 days later. Also since doing that the skin on my thighs and lower back has been tender for some reason. Spoke to my radio consultant who basically said I was wasting my time trying to get fit as it will take 3 months to get the radio out of my system and until then I was doing more harm than good. Might phone my GP on Tuesday about the tender skin.
Driving me nuts sitting around not being able to do anything and I have already considered an electric bike if I can't get back to enjoying a 50 or 60 mile ride so you have my sympathy.

Chemo has about a 2.1% 5 year success rate for stomach cancer, or a 98% failure rate. It destroys the immune system, which is the exact opposite of what the body needs. Radiation and Chemo do NOT destroy cancerous stem cells, which is why cancers travel elsewhere.
'Chemo Fog' is CFS. Chemo lowers the immune system, so all those dormant viruses from all those sore throats, vaccines, Mono as a teen, etc. start acting up and inflamming your whole system. They aren't bad enough to trigger the immune system or be contagious, but are no longer fully dormant. Viruses act on the cellular DNA and the mitochondria in the cells. This affects the Kreb cycle and ATP production systemwide. Everybody reacts to low ATP production differently, and so CFS is diagnosed differently by every doctor, depending on their specialty. Holistic doctors usually see the underlying cause of all these half-dozen weird symptoms. Since the hypothalmus uses the most ATP (energy), main symptoms are the inability to get a good nights sleep and wake refreshed, and fatigue that last for months. Muscle aches & knots (FM), chills and hot sweats (poor temperature regulation) and Brain Fog are other common symptoms. Advanced cases where it affects the heart result in dizziness when standing up.

Follow virologist Dr. Martin Lerner's protocol of supplements to boost ATP production and get some energy back!
 
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SuziRider

Regular
Location
San Jose, Ca
Measuring Heart Rate Variation (HRV) is helpful for athletes with CFS. Triathletes often use it for training, since it is easy for them to overtrain. Cardiologists use HRV to monitor their patients.
The Apps (like EliteHRV) are free, and a compatible bluetooth 4.0 heart rate chest strap monitor is about $40-$50. The more responsive the Vagus nerve and the heart to the needs of the body, the better your heart health. A low average score usually means you have previously had a heart attack, or will have one within 3 years.
The App scores your heart's responsiveness over 2.5 minutes in the morning, on a scale of 0-100. It also gives you a 'Readiness' (to train) score of 1-10. Average HRV for a normal person is around 60, and 70 to 80 for a rested athlete.
HRV will dip to the 30's after a hard or long workout, but bounce up again to the 60-100 range when the body has recovered in a couple days.
If your daily average score over a month is in the 30s or 40s (or worse!) and not 60+, it means you should see a cardiologist. Tell him you suspect low cellular ATP causing cardiomyopathy, since an EKG (electrical activity) and blood flow tests will usually be normal in people with CFS (as with every other standard medical test!)

Studies show people with a low HRV live to an average of 58.7 years, while the controls lived to 85. I am 56 with CFS, a low-ish HRV, and a heart that tends to race easily when I bike up the slightest incline, so this worries me!

Google 'Ben Greenfield HRV' to find out more about using this as a training tool.
 
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