How can you run when you have ME/CFS??

One of the (many!) questions I did my best to side-step when I had ME/CFS was ‘How can you run when you have ME/CFS?’. I just didn’t want to be asked that question…it felt far too loaded.

It felt like the implication was ‘You can’t have ME/CFS if you run’ whether the question was coming from the ME/CFS community itself or people outside.

So for a long time – even after recovering – I didn’t mention it. (Have a look at My Story for more on how I recovered.)

But then I began to realise that maybe by sharing my experience, other people with mild and stable ME/CFS might be able to run again, so here we are!

First, I’m going to be talking about the reasons I think I was able to run for so much of the time I had ME/CFS, then I give some suggestions about getting back to running. And, finally, I talk about what the benefits were for me of running with ME/CFS. 

For those of you who want to think in detail about how you can manage to run, I’ve put together a worksheet. Click here to download it. Feel free to take my questions and change or add to them!

If you are in the early stages of having ME/CFS, please do not take this blog post as a sign that you can continue to run with ME/CFS…I am not saying that all!

In fact, my suggestion would be that you stop all running or sport (as if you had an injury) until it is clear at what level your ME/CFS is at (ie it is steady) and you have several months – if not a year or two – of learning all the basic ME/CFS skills such as resting, pacing, managing stress. Managing your ME/CFS needs to be your priority. For personal reasons, I wasn’t doing much running (once a week) or exercise or competitions when I developed ME/CFS (and it developed slowly) and that made a huge difference to my experience.

This blog post is all about running, but I think the principles here could also apply to other sports . One day! I’ll talk about why cycling wasn’t so easy for me (clue: I couldn’t find a way to make it relaxing enough).

There isn’t much about running and ME/CFS on the Internet so if you do have experience, please consider adding a comment below to share your experience. Thank you.

As with all my blogs, please take what I say as my opinion rather than fact and decide whether what I say makes sense for you and your body. I’m not trained in any way (though I have been running and orienteering for over 30 years…)🙂

How can you run?

Was it because:

My ME/CFS was mild?

My body is suited to running?

I ran at about a fifth of what I can do now?

I enjoy running and find it pleasurable?

I took a lot of care?

Read on and see what you think.

My level of ME/CFS was mild.

Have you ever tried to work out what level of ME/CFS you’re at? There are quite a few different versions but, all the time I could run, I was functioning at the 70% level, and I was managing my ME/CFS life reasonably well. When my level dropped to 20 or 30% (due to extreme stress, not exercise), I didn’t even consider running: I knew my body couldn’t cope with it. The story of why my ME/CFS deteriorated is here: I would have paid ten thousand pounds.

My body is suited to running.

Whatever sport you choose to do, it’s important that it is in harmony with your body type. My body shape is one of a long-distance runner, not a sprinter or swimmer. My body (when healthy) is naturally good at endurance, I predominantly have slow twitch muscles not fast.

My running was only 20 to 30% of what I can do now I’m healthy.

 I had ME/CFS at a mild level for over 12 years and the amount of running I did varied but at it’s maximum, I was able to run continuously for fifteen minutes, walk for five, run for fifteen, walk for five, run for fifteen. I did this twice a week on my days off.

Unfortunately, so many people do so little exercise these days that that figure can sound impossible to a non-runner. So, let’s compare it to the running I can do now. In one week, I do one long run of 120 minutes; I do a short fast run of 30 minutes and I do an interval session of something like 3 minutes fast, eight times (or I would if I wasn’t injured as I am now). The other days, I often cycle for an hour. 

A big difference.

So although I lived the rest of my life at, say, 70% of a healthy life, I kept my running at about 20 to 30%, well below what might have been possible.

Running is enjoyable and relaxing for me.

I find running very relaxing and even with all the aches and pains, I enjoy it. Enjoyment is key to successfully exercising with ME/CFS as it means the body is so much more relaxed and hence has a chance of functioning so much better. Even when I orienteered I focused on enjoying it rather than the competition, and sometimes would stop in the middle of my course, and enjoy the scenery. 😊

I took a lot of care.

Taking a lot of care will be different for all of us, but this is what it looked like for me:

• I ran well below my top pace (and didn’t do intervals or hills!)

• I was consistent about how much I ran, running for the same time and effort each week.

• I ran on my easier days and had days off in between. In fact, my overall life wasn’t at its limit, so there was space for running. If you don’t know about the spoon theory, have a look here Another spoon? YES, please. Ways to think about your energy that may help you have just a little bit more.

• I listened to my body, switching to walking, resting – even lying down! – if needed. This also meant I learnt to be happy with being different!

• I avoided competitions. The competitive urge is powerful and speaks much louder than the body. Better to not even have the competition.

• I ran by myself. I found it much, much harder to listen to my body if I was with others so I avoided it.

• I looked after my posture. My weekly Pilates studio sessions minimised running injuries and helped my body to move easier.

• I ran as much as possible in nature. I find trees, fields, views incredibly relaxing so nearly always headed to the countryside.

• I didn’t run continuously. Running for fifteen minutes without stopping is very, very different than running for 7/8 minutes, walking for five, running again for 7/8 minutes. To me, it feels twice as hard on my body. Instead, I used a mixture of walking and running and, after slow, steady progress over two years, I was able to get up to fifteen minutes of running three times with a five minute walk in between.

• When I wasn’t up to running, I didn’t run. I managed my life around my ME/CFS, not around my running.

So let’s just go over the five reasons I could run again:

My ME/CFS was at the high-end of functioning.

I have a runner’s body.

I ran well below my maximum.

Running is enjoyable and relaxing.

I took a lot of care.

If you’re ready to, here’s the worksheet with a list of questions to ask yourself. 

But what if you’ve had a long break from running, what do you need to do then? 

Now, this isn’t something I experienced as I went from having ME/CFS at 20/ 30% to full recovery, but I found this article about How to start running after a long break by James Dunne. (I’m using a couple of James’ programmes at the moment as I come back from a running injury and he seems to know his stuff.)

I’ve taken James’ suggestions, and modified them with a ME/CFS viewpoint but, as it’s not been tried and tested in practice, please take it as a starting point.

Of course, the big question is ‘When should I even think about running?’ 

I don’t feel qualified to make any suggestion here, but if this was my situation, here are the three things I would think about:

What is my level of functionality? And am I steady at that level?

How much other exercise can I do? 

What is the rest of my life like? 

I’ve put these questions in the worksheet. For me, I would be looking for a functionality of over 70%, being able to walk for over an hour (this was the gauge my physio gave me in my present running injury) and I would have a feeling of space in my life.

This could be a good question to ask in one of the supportive, positive Facebook groups. Have a look here for the ones I know about Where can I look for support? Facebook groups and pages to help you on your ME/CFS journey.

Some more things to think about!

Find the easiest training programme you can and make it half as easy again.

When I returned to running after a five-month injury, I realised that because of my ME/CFS, a normal training programme would be too much. Instead, I followed the BUPA Couch to 5k programme BUT took two to three weeks for each stage, ran only twice a a week and walked for five minutes at least between each bit, and didn’t aim for on continuous run. You may want to make it even easier than that if your break from running and exercise has been longer. You may also want to have a look at Raelan Agle’s ratio method: Raelan published a video on running and ME/CFS a month or so after this one!

Keep the pace well, well down.

As James Dunne says, focus on the effort, not the pace. Keep it slow and keep it comfortable. My other half and I have had quite a few discussions as he is convinced that you need effort to get fit (he is also a runner) whilst I am convinced otherwise. My Chi Gong classes had taught me the idea of working to only 70% of your effort when you are well…and if you’re not well, only work at 30 to 40 % of your ability.

Strengthen your core muscles before you even start running.

The better posture you have when you run, the easier it will be on your body – and that’s always a good thing when you have ME/CFS. It’s likely that all the important postural muscles you have such as your glutes will have deteriorated over the years you haven’t run. In fact, Raelan Agle talks in her video about how she spent a year building up her strength training before she even started running.

Reflect regularly how you’re doing.

Learn what works for you and what doesn’t. I found reviewing and reflecting immensely valuable in my recovery from ME/CFS: it meant I became my own detective in working out what helped and what didn’t.

Give yourself days off.

It’s during the days off that you can really hear how your body is coping with running, how well it is recovering. If you follow a training programme, you will automatically have these days off, if you don’t, it’s still worth only running two or three times a week.

Release any traumatic running memories. I think one reason I struggled with cycling was that I had some tough experiences: I was always worried that they might happen again. If you have running memories which make you tense up inside when you think of them, have a look at the latter part of this blog post where I mention some tools that might help: It can be traumatic having a failed treatment. Here’s what to do if you feel this way.

Run for pleasure, not fitness.

Being able to run when I had ME/CFS undoubtedly helped my fitness, but being fit and managing my ME/CFS felt like two incongruent goals. If I focused on fitness, I would have tried to increase my total running time rather than do the run/ walk pattern I did; I would have pushed myself out on a run even when I was struggling. 

But if I focused on running for pleasure, suddenly my desire to run and my desire to manage my ME/CFS well were compatible. If you want to set yourself a running goal, this blog post of mine may help where I talk about holding a goal lightly may be useful: How a simple plan was a game changer for my ME/CFS, and how to create your own.

It seems a lot to think about but as I learnt over the years being cautious – focusing on the details whilst holding the bigger picture – gave me a better chance of success. And the benefits of running for me were great.

Let’s finish with those!

Joy: running slightly downhill through a beech forest is one of my greatest pleasures, and feeling joy helps to switch the stress response off, something that is so important in living well with ME/CFS.

Understanding: my understanding of the running training envelope deeply informed my approach to managing my ME/CFS envelope, and my experience of returning to running after an injury whilst having ME/CFS helped me work out a way to get back to walking when the severity of my ME/CFS increased.

Consistency: being consistent was key to my recovery. My first steps in being consistent, were running regularly and learning to do my posture exercises daily.

Body awareness: running and Pilates got me to learn to listen to my body: the all-important first steps.

Grounding: one of my side symptoms was feeling I was woozy and not in my body. As long as this wasn’t too bad before I started, all that repetitive pounding of the ground seemed to help me feel better.

And, finally, the most obvious one, the fitness one. Being able to run kept me fitter and healthier….was it a factor in my recovery? I’m not sure. The four factors above were probably bigger factors. How bizarre is that!

Perhaps, this is is why when I had a five-month break from running (because of a running injury), my ME/CFS wasn’t any better or any worse. At least after that, I could answer the question ‘Wouldn’t you do better without running and cycling?….’No’

I hope this blog post has given you some pointers, don’t forget to download the worksheet, and share your knowledge below!

Warm wishes

Ali

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