Any ME/CFS sufferers?

[Tatty_ead]

Hi I want to start getting fit and was looking for advise on a starting point as I suffer with ME. I can have some days when the fatigue and pain keep me in bed but I still want to improve my overall fitness. I’m hoping this will help with some of my symptoms. Thanks in advance.

[IannodaTruffe Mentor]

Welcome to the forum.

This guide to the plan is essential reading healthunlocked.com/couchto5...

You and the medics who are familiar with your condition know what you can do better than we can.

You might find another community more closely associated with your condition helpful.........click on the nine white circles next to My Hub at the top of the page.

Enjoy your journey.

[Tatty_ead in reply to IannodaTruffe]

Thanks 😊 I’ve found the active 10 app and I think that might be more suitable for me at the moment. I’ll start with that as I actually have 11 months to get to the 5k mark. I want to do the Santa dash in early December 🎅🏻🏃🏻‍♀️.

[GoogleMe Graduate in reply to IannodaTruffe]

Hahahha, medics familiar with the condition... that's a good one!

[Jell6 Graduate in reply to GoogleMe]

?

[GoGo_JoJo Graduate]

Do what you can when you can, hopefully in time you'll see some benefits and it will start to become easier.

Ultimately doing something is always better than doing nothing.

Best of luck 👍🏻😁🤞🏻

[Tatty_ead]

Thanks everyone I managed 9 minutes yesterday 🙁 but it’s better than none so I’m taking it as a good start 😊. And since it’s 12:30 and I’m still in bed in pain I’ll take what I can get 🙃

[GoogleMe Graduate]

Whilst most health conditions are going to be improved by a gentle programme like C25K, there is a genuine possibility if you are a person with ME of permanently and severely disabling yourself and burdening yourself with unbearable symptoms. Which does add a wee frisson of excitement to the whole thing, haha... and sometimes nothing *is* better than something.

However, in a cruel twist of fate, having ME does not grant you exemption from all the risks involved in being inactive and/or overweight.

Think carefully about why you are attracted to the programme - there can be plenty of unhelpful, selfpunishing deluded reasons. I'm faintly concerned by the time of year you are thinking of starting (although I am somewhat better in winter than Summer so I am not saying that seasonally it is a bad time, just that it can be a mistake to get caught up in New Year atmospheres) You can't outrun this condition, literally or metaphorically, you can only look after yourself and seek the best quality of life possible whilst it does its thing.

For me, it was free, I could do it by myself at times of my own choosing with no special equipment (and I really mean that, my first C25K run was in walking boots), it didn't ask for any warm up or down beyond the walk at the beginning and end and the non-running day minimum between sessions is excellent. For PwME it's not just about the normal physiological recovery but allowing us to better assess impact, giving time for the symptoms to develop, rather than piling on damage. It provides a tremendous sense of achievement and a massive digit to those people who have made a career out of saying we only feel ill because we're exercise phobic. If, just like many people who don't have ME, you have a boom and bust sort of personality (I don't), then the framework can be helpful in reigning in enthusiasm.

I started... well, first and foremost because I'd had an unexpected degree of improvement in symptoms post menopause but also because I needed to lose weight. I tried brisk walking and it is just too painful to sustain... so personally I would beware of the notion that it is a gentler form of exercise and some sort of essential stepping stone. I'm almost 8 years into running now and I can run continuously for two hours, but brisk walking, whilst easier than it was if I need to do it for some other life reason, remains a problem (I did not get on with Active 10, the basic premise of every day is probably all wrong for PwME). Sometimes going for a run is pain relieving for me... going for a walk almost never is (although has obvious other merits). I used to have a lot of shin pain and it disappeared. I avoid hard surfaces - almost never run on pavements and tarmac and avoid running on harder surfaces like our local trails more than a couple of times in a row. I wear minimalist shoes not shoes with a thick cushioning sole because I need to feel the ground - helps me stay upright (always good!) and keeps my pace safe. I've suffered much more when I have not observed these restrictions. I do not stretch just before or after the session (interestingly the only time I have felt the urge to stretch after a session is when the 5 minute walk is skipped or skimped and pain levels are certainly grim if you skip the walk. (I do have a yoga practice now which I find very beneficial, but I do that completely separately)

Running has not improved my underlying illness (I guess if it had, it would imply misdiagnosis). I have had to reduce/cut out other activities in order to work on physical fitness so that's a tricky balance. It also seems to mean that others struggle more to understand limitations and to make reasonable adjustments. There is also the issue that whereas running (or other activity) can have a direct positive effect on mental health for most people, for PwME it can produce a very down mood (obviously knowing that's all that is going on helps)

We've had a number of people through here but given the variety of descriptions/diagnoses and of course the different symptoms/severity, and the very different personalities and mental health of individuals, it's difficult to draw overall conclusions.

[Tatty_ead]

Thanks for your information I will definitely reread a few times to take in what you have said.

I did nothing yesterday as I was exhausted and in too much pain. I’m currently sitting in the doctor’s waiting room with my daughter, and having done a brisk 6 minute walk to get here, in agony and my legs are shaking. I will try this out for a bit on alternate days to see how I get on. Even if I just walk around the block a few times throughout the day to make up my 10 mins, I’m not stressing I’ll just go at my own pace. I think my motivation is more about getting off the couch than doing the 5k 🤣. I will speak to my husband as well he tends to notice when I’m trying to push through more than I do. It’s interesting that in your experience running is less painful, I will probably do each week twice to make sure I’m not pushing myself too hard. And I know I can always go backwards if I do start struggling, it’s just nice to have a basic schedule to work from that doesn’t cost the earth in subscription fees.

[GoogleMe Graduate in reply to Tatty_ead]

It sounds as though you may not yet have read the FAQs on the forum about the programme, or listened to the first session as both of those clarify the actual aim of the programme. ****It's not about 5K for any of us!****

(Obviously some, probably most, eventually do go on to run a full 5K because we want to but for many, again probably most, that won't be in 30 minutes and it will happen some time after completing the C25K programme)

Remember the programme is at least as much about 'learning to run' ie acquiring a skill as about physical fitness. It's not a linear thing so repeating weeks for the sake of it may not tell you anything at all. For example, after graduating (so being able to run continuously for 30 minutes) I thought I'd give week 1 a go again. It was still really tough and I didn't manage it.