ME/CFS and cycling

[Philk]

Last year I was doing ok with the cycling, then after a chest infection which i never seemed to recover from, I went to the GP (several times) and eventually, after seeing a specialist, I was diagnosed with CFS.

Im finding after 10 miles, im done, cant turn another pedal.
Then for a few days after I have no energy at all.

Does anyone on this site suffer from the same and how do you cope?

I am loving getting out on the bike and loving the modern cycling technology.

 

[mchunt]

Usually turns up after an infection I had a throat infection when I was 17 (just before A Level mocks - luckily had enough ucas points already with course work alone) and I was wacked for a couple of months, now every few years CFS re-occurs and there isn't much that can be done.

St Johns Wart and Vitamins can help a bit but best thing is to enjoy life whilst you can and don't push it too much when you are suffering.

Was starting to feel the first signs of CFS a couple of weeks back but eased off, extra vitamins, some reflexology and a holiday - now I am starting to feel quite a bit better. Must take care this winter.

Buying a new bike for my b-day in March so have to be well by then.

 

[BrumJim]

My wife had ME. Commiserations.
Problem is that ME is diagnosed by exlusion, i.e. you are tired, and we haven't got a clue why. Hence all suggestions on treatment when judged against objective criteria fail, as there is no objective way of measuring success.

Join the ME association, get some reading in, and find out what is known.

Pacing, as a treatment method, would suggest using your bike ride, and steadily increasing distance by no more than 10% each time. If you feel tired afterwards, reduce the distance until you can complete it without feeling tired the next day, and start again. Recent government studies suggest that Pacing has no real effect on symptoms.

Graded Exercise Therapy would suggest doing the 10 miles, regardless of how you are feeling. NICE supports GET as the best treatment. ME Association research shows that it makes a significant number of people worse, and given what worse can mean, isn't worth the risk. The disparity is possibly explained by self-selecting groups, i.e. those that are not very badly affected are more likely to keep in contact with their GP, and will benefit from GET. Those badly affected and that get worse under GET are unlikely to be able to, or willing to visit the GP, and therefore are not counted by the NHS, but will be in contact with the ME Association.

With ME, never, ever push until you are tired. Stop before then, and enjoy the success.

Finally, please PM me after Christmas. Would love to chat through with you and your experiences.

 

[byegad]

Been there, done that, got over it.

Do what you can but to never push beyond absolute comfort is a good idea. BUT it takes time to go, I was off work for 7 months after pushing on at work for a couple of months, it would have been shorter had I given in earlier. It took me another five years before I got back to 95% of my old self and now, some 25 years later, I'm at 99%. I can still have bad days and on those I do nothing, but they are few and far between and I pretty much forget about it for most of the time.

The absolute worst thing you can do is work to exhaustion, that's what I was doing and I paid for it.

 

[SuziRider]

Google 'Dr. Myhill CFS' for more information on the causes and treatment of CFS. She is located in the UK and has treated over 5000 people with it.

The 'ATP Profile' blood test by Acumen Labs in the UK (Wales) is the only blood test I know of for CFS and the mitochondrial dysfunction that causes it. It shows which of the 5 or 6 components of the Kreb's cycle is lacking. It is not yet licensed in the U.S.

Taking magnesium, Acetyl-L-Carnitine, CoQ10, & a 5gm scoop D-Ribose in your coffee, food, or drink 3x/day helps a lot, per Dr. Jacob Teitelbaum, MD and Dr. Sarah Myhill.
I also have found that +200mcg Selenium and "Iodoral" iodine has helped my heart and energy levels a lot, but it took a few months.

Fibromyalgia muscle pain is a symptom of CFS, and it is from lack of enough ATP and magnesium in the muscles. An extreme case is called Rigor Mortis, but where there is still blood flow, knotty muscles are a mild case.

Poor cardiac output due to the low ATP (="cardiomyopathy" =weak heart muscle) and thus low blood pressure when standing is another symptom in people with advanced CFS. The EKG test is usually normal, since electrically the heart is fine. So is blood flow (no blockages).
Dizziness upon standing is the main symptom, and risk of injury from falling or a heart attack skyrockets. This is the most worrysome part of advanced CFS, since it is much more likely that the person will have a heart attack in the next 3 years. Cardiologists miss ATP malfunction unless they do an ejection rate 'Q-factor' test, but then they do not know how to cure it.
Beta blockers (which slow the heart) make it worse. The mineral Selenium (200-400 mcg/day) helps the heart function, including arrythmias. People who sweat a lot are usually low on selenium, since the minimum RDA is not enough, and few electrolyte mixes contain it.
Note : Known side effects of extra selenium are age spots disappearing and eye sight improving.(!)


Most MD's are unfamiliar with CFS.

Most ND's are quite familiar with it, since it (& hormone issues, which are a common symptom of CFS) are their bread and butter. Unfortunately, most insurance doesn't cover holistic doctors that actually try to optimize health and cure people. That pisses me off!

 

[SuziRider]

Excercise 'as tolerated' every 2-3 days. Do about 80% of what you think is easy, and keep the heart rate below 60-65% of VO2 max or HRmax at first, slowly adding time or distance, then start adding very small bursts to 80% and 90% (overpasses and small hills?) after 6 weeks. Keep a log of how you feel before/after, & adjust it as needed.
Weight lifting and bicycling work well for those with CFS/ME, since amount done is quantifiable (unlike a zumba class!).

A scoop of D-ribose (a special sugar that helps create more ATP) in coffee will help. If you are diabetic, be careful since it can *lower* blood sugar (by making your body work better!).
Three days after starting d-ribose (3 scoops a day), I started sleeping better. My guess it was from the improved ATP going to the hypothalmus, which controls sleep and hormones.

 

[Dave7]

I had it some 20 years ago and it lasted for maybe 12 years in total. For some reason it seemed to strike in the afternoon. I could be fine one minute then suddenly just had to lie down and sleep. The symptoms got less and less as the years went on. I could play golf and go walking etc. with no problem for weeks but when it came on I was wiped out for a few days.
I had a friend with it but she was far worse than me...........I think there must be many degrees of severity and you,my friend, can only do what you personally can achieve.
I wish you a speedy recovery.

 

[SuziRider]

Yes, there are different degrees of CFS, and many different (but related) symptoms, all a result of systemwide inflammation and low cellular ATP, including in the muscles and brain.
Main common CFS symptom is the inability to get a good night's sleep and wake up refreshed. Another is exercise making them feel tired and achy all over for 2-3 days, much like the flu, instead of energizing them.
Otherwise, CFS varies person to person, and goes by many different names due to this variability, and according to what type of doctor diagnosed it.

A common and recognizable mild case of CFS in women 40+ is also known as 'Menopause Symptoms', in men it is called 'Night Sweats', since CFS (low ATP) starves the energy-hungry hypothalmus in the brain, thus affecting temperature regulation, sleep, and hormone levels.
Someone who has had chemo run down their immune sustem calls CFS 'Chemo Fog'.

There is a 0-10 CFS Energy Scale that elaborates on the different degrees of CFS. Google it to get the details. Briefly:
0 = bedridden
1= 'up' 1 hr/day (Up= in a chair)
4= unable to make it thru an 8 hr workday
5=barely make it thru a workday
10= normal work, play, sleep.

By definition, for CFS the various symptoms continue for 6+ months, though they will vary in severity during that time.

I retired from work so I could rest more. At the time I didnt know why I was so tired all the time; All my medical tests were normal.
After a lumpectomy (which healed up in weeks), for months I could only sleep 3.5 hrs/nt, was too tired to get out of bed, except for using the bathroom. I had too much brain fog to read.

After googling Brain Fog & Fatigue, I learned about CFS.

I was a Energy level 4 when I left my job, and a 1 for months after my surgery.

Eventually I progressed to also going to Church (1 hr) on Sundays, which would be Energy Level 2 (up 2 hrs total).
I started bicycling twice a week. Just to the nearby park at first, but kept adding a little more each week. It would put me in bed for 2-3 days recovery each time, but I had nothing better to do with my time. The house stayed a mess.

Two years later, after a setback from a Flu shot, I am (once again) a Energy Level 4, and can bike 30 miles 3x/wk.

Recovery is slow. But possible. The body can heal itself if it has the right nutrient ' tools'.
Rebuilding the immune system and eliminating stressors is the key.

So is education, so you know when your doctor is clueless about the underlying cause (i.e. a virus, which may or may not show up in a test, depending on the Lab) and cure (BUILD the immune system!).
Side effect is that the cure for CFS is also the preventative for Cancer. :-)

 

[Hill Wimp]

I was diagnosed with CFS in January this year. The diagnoses took 2 years of tests and it's cause has finally been nailed down to a combination of a bad respiratory virus I caught in India in December 2012 and my stressful work life.

I spent the best part of 2016 off work. At my worst I couldn't remember how to make a cup of tea, had to sleep for 3 hours after a shower and was unable to remember a sentence I had read almost immediately afterwards.

I went back to work full time in early November but have already dropped one day to work from home. I am a million times better than I was a year ago but after seeing the consultant a few weeks ago he explained that work was impeeding a full recovery. I am lucky I have 409 working days left until I retire so it is a case of managing that without damaging further the great work I have done in the last year.

For me I used meditation , acupuncture, osteopathy, healthy diet and a gradual increase in exercise from walking to the post box to 40 miles rides.I also take anti depressants because they regulate my sleeping pattern and take the edge off of the frustration of the illness and it's symptoms. I have learnt that there are pay offs. If I want to do a 40 miles bike ride then the few days beforehand need to be days of almost complete rest and that the two days afterwards will be painful. So my 40 mile rides are special occasions such as the CC rides in the summer.

My biggest issue currently is my memory and brain fog. I have got used to how bad it is but it can be really quite upsetting on occasions such as yesterday. I had a fantastic day with @Fab Foodie and all was going well until my brain decided to pull the plug mid afternoon and I couldn't remember stuff that we had done that day. I was utterly mentally exhausted and there was no obvious trigger.

My consultant describes me as a high functioning patient which basically means i was a duracell bunny that only gave up when the batteries ran out. Not one that rested well in between periods of high stress. I am now very different. I have come to accept many of my limitations as I know I will get better and I am a lot better at identifying triggers and changing things to stop them spiralling downhill. I am also a lot better at living in the moment and accepting that because a particular job at home may not get done it does not mean I am a failure and the world won't end.

In a lot of ways CFS has done me a favour. I'm 48 and it's forced me to slow down and value what I have rather than keep chasing what I think I need.

 

[Ajax Bay]

See also:
https://www.cyclechat.net/threads/any-cyclists-with-me-chronic-fatigue-syndrome-out-there.61040/

 

[Dave 123]

Mrs Dave had it 7-8 years ago. She'd been battered with cold,flu,virus all winter then in early spring went on a girls walking weekend in the peaks (whilst having a cold)

About the same time she had a totally unjustified bollocking from her (then) boss in front of others which knocked her for 6.

She was out of it for a good 12 months, zero energy, hair like straw, death like skin.

After about a year I kind of got a bit frustrated and asked when she might get better.... it didn't go down too well! But, a few weeks later she asked herself the same question, then the doctor used the letters MS.

She decided that she wasn't having this. She slowly, slowly did a bit more each day when she could (some days she couldn't).
Her approach was on a day that she felt crap, she'd do a bit. On days she felt ok she wouldn't push it.

From here on in it took a couple of years for her to be over it.

Now when she has lurgy she is very careful not to do too much.

Listen to your body!