Do you have any tips for coping with lupus?

It is our intention to write a booklet on tips for coping with lupus from actual patients so we would be most grateful for any that you can provide. These can be anything from how to manage flares/get a good nights sleep/which exercise is good for lupus patients to how you cope with telling people you have lupus/explaining to your children what lupus is or even how you relax or what you do to try and take your mind of lupus (hobbies etc). Literally anything at all that helps.

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  • Keeping to a very regular routine - bedtime, getting up, housework, resting, eating; not rushing around and not trying to do too much in a day. Learning and practising relaxation/hypnotherapy. It's a bit dull but it really cuts down on those days when you can't get out of bed with exhaustion/pain.

  • I have a couple of simple ones ..

    Having a hot shower or bath before bed is a must for me as it seems to help ease of some of my night pain while sleeping. If I don't have one I really notice the difference.

    Sleep eludes me a lot but I've found recently that if I eat a banana and a chocolate biscuit an hour before bed it seems to help me get off to sleep easier .. I read it in a health magazine once No idea why it works but it but it does :)

    I'm very reactive to the sunlight so I've invested in chiffon and linen clothes and pretty woman style big hats for when the suns out. I never use anything less than factor 50 cream and that seems to help too.

    When my malar rash is out in full swing I use a face cream with sun factor in, followed by a liquid foundation and then a compressed powder on top. It doesn't fully hide it but makes me feel better to not see people staring as much :)

  • I have a couple of simple ones ..

    Having a hot shower or bath before bed is a must for me as it seems to help ease of some of my night pain while sleeping. If I don't have one I really notice the difference.

    Sleep eludes me a lot but I've found recently that if I eat a banana and a chocolate biscuit an hour before bed it seems to help me get off to sleep easier .. I read it in a health magazine once No idea why it works but it but it does :)

    I'm very reactive to the sunlight so I've invested in chiffon and linen clothes and pretty woman style big hats for when the suns out. I never use anything less than factor 50 cream and that seems to help too.

    When my malar rash is out in full swing I use a face cream with sun factor in, followed by a liquid foundation and then a compressed powder on top. It doesn't fully hide it but makes me feel better to not see people staring as much :)

  • Factor 50 is a must if you're sun sensitive, regardless of the weather.

    I eat a healthy, balanced diet, and try to eat oily fish twice a week.

    I exercise when I feel I have the energy. For me swimming (open water is great!), cycling and Pilates work well. When I have less energy or am in a flare I don't feel guilty about not exercising. I'm never going to win the Olympics so doing what I can, when I can, and enjoying it and feeling the benefit is what's important. I have a dog so always walk, even if I have to drag myself!

    A wee nap in the afternoon (or late morning!) is great if I feel the need. Again, I don't feel guilty about doing that. Sometimes I'll have a wee power nap and then go for a cycle! It works!

    I work part time now. I found full time too much, and working part time allows me the time and energy to do other things; exercise, cook (I have coeliac disease so cook everything from scratch), spend time with friends, rest! I find that working gives me a sense of purpose each day. It takes my mind off my illness and any niggles I might have.

  • I have found acupuncture to be beneficial helps with pain and I find I feel very relaxed after a session. It's also available on the NHS which I'm not sure many people know?

  • Thanks Ruby-j! Which areas do they concentrate on?

  • Sometimes localised where pain is worse, generally all main points are used to feel overall benefit' it works for me can't explain why I just know it offers me relief all be it temporary and gives my body a break from pain!

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