Joined for my daughter

I don't have lupus myself but my learning-disabled daughter does. It's difficult sometimes for me to judge what is important or just a fleeting pain, and to know when I should worry or just go with the flow. On the whole she's fairly healthy though. Just before diagnosis she had a DVT in her thigh and the consultant recommended she walk a minimum 5,000 steps a day. We have done this ever since (about five years) and funnily enough her fatigue gets a bit better the more she manages to walk.

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  • I find that exercise helps me and my fatigue has improved since doing some gentle regular exercise ... I like aqua as the water supports your joints. As with all things lupus you have to pace how much exercise you do, and listen to your own body (also build up slowly if you are just starting out)

    This site is great for asking questions and getting advise if anything worries you, or if you just need to vent, feel free to get involved

  • A lot of people find some exercise helps with a lot of autoimmune disorders - I suspect it is because the problem often lies in the mitochondria, the "powerhouses" of the cells and exercise helps them work better. That is the reason the scientists make such a big deal about exercise preventing so many diseases.

    Hugs to a mum who is obviously doing a great job! xxxxx

  • Hi Lambassador,

    It is great that the walking seems to help your daughter's fatigue. Regular gentle exercise is recommended with lupus because it has a number of benefits, including helping to manage fatigue. You can read more about lupus and exercise in our blog article here - lupusuk.org.uk/lupus-and-ex...

    Was your daughter also diagnosed with antiphospholipid syndrome (APS, Hughes syndrome, 'sticky blood')? This often overlaps with lupus and can cause clotting issues. You can learn more about it at aps-support.org.uk/

    If you need more information about lupus you can request or download or request one of our free packs from our website at lupusuk.org.uk/request-info...

    We also have our full range of publications available to read or download at lupusuk.org.uk/publications/

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