M.E. As a runner & HR findings.

Hi All... new poster here!

Bit of background about me:
I'm male and 32 years old. I've suffered from M.E. since I was 18, after getting glandular fever and mumps in the same week at college. I was pretty bad until about 27 when my condition seemed to improve and I could start exercising again.

I would now say that I am relatively okay. I go through periods of being fine and then set-backs (usually triggered by a virus).

I started running again at age 28 and have since become fairly proficient. I can do 5k in 17 minutes and 10k in 36 minutes. In all the time I've been running I've always had a Garmin watch with built in Heart rate logging, or worn a HR strap if i want to ensure higher accuracy particularly on fast track sessions.

Its amazing the amount of data you can amass just from the beat of your heart. I'm so familiar with it that I could probably look at a trace and tell you exactly when I'd had caffeine, climbed steps, had a cold, when it was a hot day etc..

Now, over this time I've also started seeing patterns and strange things happen when I have bad M.E. days. (Just to add: I do exercise on my bad days too, fighting fire with fire seems to work for me in getting over relapses)

Here's some examples of weirdness:

My HR on a half marathon race. This is very normal... HR rises steadily as the race goes on. I felt great this day and ran very well.
Screenshot_20190511-125954.png

Here's a few weeks ago on an 8km run when I felt terrible. Look at all the crazy spikes and troughs... pretty much mirrors how i feel with a very fluttery and jumpy heart.
Screenshot_20190509-030334~4.png

This is my HR taken just after i wake up. This is me feeling good... very flat and steady in my sleep with the odd spike (probably when i move in my sleep)
Rest Normal.jpg

Here is after I wake up on a bad day. Notice how spiky my HR is in my sleep and how it gets way higher even before the point i just wake up. I've correlated this enough with bad days to know it is related.
Rest ME.jpg

There was one time i had terrible Dyspnea, but I decided to go to track training anyway. We did fast intervals of 400m and 800m. I literally could not grab any air and started to get seriously light headed.. honestly thought i was going to pass out. Normally in such a session, My HR during those hard efforts should be pretty high - getting up to 170 or 175. Look at the trace from this session - its almost like i've maxed out at like 135 and i cant get any higher. FYI my heart was really really sore for weeks after this, like I had strained it
Dys.png


That's just some of the oddities i've found anyway, maybe someone can use this data or use it to verify their own findings. Please feel free to ask any more questions!

 

Hi Trish,

Thanks for the welcome!

I should clarify that my symptoms are now not serious enough that I have the option of trying to fight through it. I'm usually slow, out of breath and in pain but I can get out there with some willpower. Contrast that from any point between 18-27 years old in my life and doing any hard exercise would result in me being completely wiped out for weeks and weeks.

When things flare up again, I do get more post-exertional malaise. I usually need to take a day or two off exercise after... but it seems to speed along the process of my recovery. Just resting alone does not help me get through it.

I also get some post-exertional malaise even when things are good, I know that my recovery times are definitely longer than a normal person. I guess i just know where my threshold is and try not to go OTT.

As for general well-being, here's some things I do:

- Avoid alcohol
- Avoid caffeine
- Drink buckets of water
- Try and eat well (Although I haven't seen any major effect of good diet)
- Perrin technique / lymphatic drainage techniques.

I guess the frustration for me at the moment is that people see me with this high level of fitness (higher than many without M.E.) and can't understand how there is a problem. I think everyone here remembers what it felt like to be *normal* and i know that things aren't the same as before. I still have bad brain fog, muscle twitching, that feeling of heaviness in my blood... all the strange things. I guess the only thing that has changed over time is my threshold of what i can achieve with the condition.

 

Thanks! I appreciate your concerns. I've had two ECG's in the past few years and all i've got back was that 'your heart is extremely healthy and normal'

I mean there's clearly a problem in my eyes, probably something external that is having a knock-on effect with cardiac issues. But.. what can i do?!

 

Be prepared for a bunch of people to criticize you and say, "You don't have ME/CFS."

 

That sounds an interesting study. Have you suggested it to the NZ research group? Might be considered unethical!!??

 

Hi @philw44, welcome.

Your readings and description of symptoms are a very good fit for POTS, which seems to overlap with ME/CFS and is a very common misdiagnosis.

The fact that you don't seem to deteriorate despite further exercise on a PEM day makes me wonder if you lean more towards classic POTS than ME/CFS as a defining characteristic - but we don't understand either very well, so that's debatable.

Either way, you might find looking into POTS is useful to you in terms of meds/behavioural changes that you can make to smooth out the bumps.

Cheers,
Ryan

 

It's an interesting question at what point do you consider someone no longer meets the diagnostic criteria, is the correct diagnosis now mild ME/CFS, in remission, recovered with the odd flare up...

If you can manage a 10k run do you still meet the 'Postexertional neuroimmune exhaustion' requirement of the ICC, can you have SEID if you are no longer intolerant to exertion.

I don't know where the right place to draw the line is but for research purposes at least I feel it needs to be somewhere.

 

I didn't experience PEM until I started running again 7 yrs into the illness when I felt almost 'recovered'.

 

Remissions aren't surprising. They happen. I've had a few. Every relapse led to a lower overall level but during remissions I was able to be pretty active, even if I was not in any way back to normal health. Which was likely the biggest mistake but then I was not even aware of this disease and so did not have adequate advice.

I never improved by exercise, though, only by extended rest which eventually allowed me to be more active, which inevitably brought me back down to a crash. The only people who seem to maintain a remission are those who follow the right advice: essentially the exact opposite of what is advised by the psychosocial ideological model.

 

In 1992 the ME doc I saw told me "do nothing, even when you feel recovered", but I didn't listen because he didn't explain why

 

Hi All,

Appreciate your responses - all very interesting!

Hi Ryan,

Thanks for the advice.

I've never really looked into POTS... but i'm not sure it quite fits. Its not as simple as me standing up and things going haywire.

Most of the time it is a virus. Other times it has been because i've had too much alcohol / caffeine / not slept... but i've been disciplined enough to not let that happen for a while.

My last big flare up occurred from a stomach bug. The bug lasted a couple of days, but after that I had all the classic M.E. Symptoms for two weeks... fatigue, brain fog, aching, feeling 'heavy'. The only thing that has changed from ten years ago is that I am just less great, rather than being completely knocked for six.

 

POTS is a simplified/lazy way of talking about wider autonomic dysfunction and is absolutely not limited to having simple issues that only occur upon standing. It tends to be defined that way because that is the easiest thing to test.

Increasingly research is showing there is underlying small fibre neuropathy at play in POTS patients. This is thought to play havoc with all sorts of functions: circulation, sweat response, vision, gastric motility etc. When things get particularly bad you tend to see some endocrine manifestations too and the effects can be pretty significant.

The cardiac response, chest pain, shortness of breath, worsening after viral illness, positive response to repeat exercise etc. is all very much textbook POTS. It would be interesting if you were to use a program to analyse your Heart Rate Variability and see how that changes the day after exercise too (last time I checked you needed a chest strap and not a simple watch-based HR monitor), as well as conduct CPET and tilt table tests.

I would encourage you to have a read as most of what you describe fits POTS very well, and in some parts, better than CFS - there is overlap though so its not to say you don't have both in some form like myself.

http://www.potsuk.org/symptoms

Cheers,
Ryan

 

Thanks Ryan, i'll look more into it.

I could get a CPET test, at least if nothing abnormal was found i'd get my V02 max and lactate threshold measurements! Do you know a place in London that would do this test?

I do have a chest strap HR monitor, but wouldn't be sure exactly what i'm looking for!

 

Hi @philw44,

Your data looks very similar to mine. I was a long-distance cyclist before I developed M.E. and I noticed the same patterns in my training data. I also see from your data that your heart rate doesn't get as high on your bad day, and I found pretty much the same thing during training (back when I was still forcing myself through it) - I would push myself to exhaustion, and that would happen fairly quickly, but I just wasn't able to get anywhere close to my max heart rate, in spite of the very high RPE.

Your sleep patterns are also virtually identical to mine - a nice, flat line on good days, and a spiky nightmare with significantly higher bpm on bad days.

 

@philw44 and @feeb have either of you tracked your HRV with your training?