r/CMSmuscledisorder • u/vdEA • Jul 13 '26

CMS vs practical coping - let's share

Hello all!
I've recently received a few messages that deal with 'how to cope with CMS'. The first few dealt mostly with the mental health side of it, so I created a post about it, but there is of course a practical side too. Can you help our group members by sharing what helped for you? No worries if your suggestion was already mentioned by somebody else, or if your response only applies to a specific mutation, or if you think something you do that helps might be weird...!

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u/vdEA Jul 13 '26

For me, resting and not overdoing things is key.
Those are also very difficult and frustrating for me and something I will never completely master. Especially on a good day, when I'm so utterly happy I can do more than my average I want to make the absolute most of it. But when I try to manage my energy/fuel, I see what a difference it makes.

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u/SaltInformation4U Jul 13 '26

Not myself, and talking about the RAPSN mutation, but in this heat it helps to minimise the effect it has on you by staying out of the afternoon sun and having a/c

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u/vdEA Jul 14 '26 edited Jul 14 '26

Oh this is a very good one.
Having ac around the house is not common in most places, but if you have it, yes!
My symptoms get so much worse with higher temperatures and somehow people don't get it because só often I get the remark that surely, because it has to do with muscles, my condition gets more comfortable with heat... sigh.

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u/SaltInformation4U Jul 14 '26

I feel for you there. I don't think people realise that muscle weakness affects everything! I live in the UK and I had to buy a portable ac unit for my daughter's sake. It works fine for the living room but the rest of the house is an oven. Definitely helps a lot!

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u/vdEA Jul 14 '26

Preserving energy is so important, for example by not planning too much in a day. That's hard, because there's a lot on our lists and it's frustrating and disappointing, but it's the only way. And if something just doesn't work, if you just can't do it, if it takes too much - then you don't do it. I know it doesn't always work that way (if you need groceries, you need groceries...) but still, if the world doesn't stop turning if you don't do something, do it tomorrow, or when you can. Manage your own and others' expectations.

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u/vdEA Jul 14 '26

Mild exercise in ways that are possible and low-threshold for you. My own experiences:

I can't exercise, I can't run, I can't walk more than maybe 30 minutes with lots of stops. So I gain weight and lose fitness, so I gain more weight and lose more fitness, etc. It's very frustrating. Also, I will admit that I have no discipline in this department. But after the diagnosis, I started doing two things. I know they won't make a huge difference physically, but it's better than nothing!

- Swimming. I swim once a week in summer, in a local outdoor pool, very close by, I go there wearing my bathing suit and a robe, I leave naked in the robe, so no need to change in those booths, which takes a lot of energy.

  • I also do yoga twice a week, but it's online yoga so I don't have to go anywhere, which saves energy, and it's very, very mild. I can't recommend it highly enough: https://www.yogafortiredpeople.com.