Lupus is a lifelong chronic illness, so expect to treat it as a marathon and not a sprint. There is no cure or quick fix for lupus, no matter what people may promise you on social media or the internet!
Every single lupus patient is different so there isn’t a ‘one size fits all’ medication to treat lupus as there is with other conditions. It will take time, possibly a long time, to find a medication or combination of medications that work for you. Even when you do that your lupus will change over time and your specialist may have to change the medication or adjust the dose and this may happen more than once. You should be seeing a Rheumatologist at least once a year even if you appear to have your lupus under control and/or are not taking medication as lupus can change suddenly so you need to be regularly monitored.
Diet and exercise are known to help lupus (see links at the bottom of the blog). Had I not had lupus to concentrate my mind on diet and exercise I might not have been as focused on them as I am now. Hopefully in the long term, this will also give me a better quality of life into old age. I have severe issues with osteoarthritis and my rheumatologist said the fact I’m ‘sporty’ (always makes me chuckle when she calls me that as I’m really not, but I do some exercise most days), is the reason I’m not in extreme pain.
Lupus patients often have intolerances to some things including certain foods, you may not realise that at first, and may have to try to discover what causes your lupus to react by trial and error. Some groups of foods cause inflammation and they are the foods that may well be causing issues. It might be worthwhile checking on the internet for foods that cause inflammation and removing them from your diet to see if you feel any better.
For me an excess of sugar (a well known inflammatory food) causes my body to react very badly, a fact I seem to forget every Christmas! It then occurs to me that my joints/muscles are letting me know that I’ve overdone sugar. After all these years my mind doesn’t immediately go to this cause, even though it’s happened so often I know that’s definitely causes me problems. When I finally do remember and cut back sugar my body stops complaining so much and I go back to what I feel is my ‘normal’ level of pain. I think I need a big sign saying ‘step away from the sugar’ that I can hang up every Christmas as that seems to be when I seem to lose a bit of control.
Exercise is a contentious issue, doctors will recommend it for everyone and some people will immediately react by saying ‘I can’t exercise!’ This is often because they think of exercise as running marathons or going to the gym, when infact what we need to do is keep mobile. This can even be by seated exercises or just a little walk, the worst thing we can do is stop using our muscles as that will lead to more serious problems in the future. Our long term supporter Kelle Bryan was wheelchair bound and started by exercising her muscles with bottles of water whilst in the wheelchair, she’s now a regular exerciser, but to get to this point took her a long time and determination. Check out @kellebryan on Instagram where she often posts her exercise regime.
If it was a choice of watching TV or exercising my mind says go with TV, but I’m getting older and that motivated me to finding an exercise I quite enjoyed, that would keep me mobile and that I could do at any age. I noticed I was having more knee issues/losing muscle mass and the fear of not being able to walk far outweighed having to commit to exercise regularly. Plus it’s a well known scientific fact that levels of chemicals in the brain, such as serotonin, stress hormones and endorphins, change when you exercise elevating your mood. Regular exercise can help you sleep better and heaven knows we all need help with that!
As I keep saying, all lupus patients are different, there are patients that can run marathons, which I couldn’t do even before I had lupus. You just need to know your own limitations and work within them and find what's best for you.
Again exercise is a marathon (not literally!) and a lifelong commitment. I’m happy to commit long term as having a chronic illness and not being mobile would, for me, be the worst thing ever.
The final piece of advice, is to talk to those closest to you. They need to understand that you have a lifelong condition, one which may be very unpredictable and may mean you have to change/cancel plans last minute. This isn’t anything personal, you still love them and it’s equally as frustrating for us as it is for them when this happens, so do take time to explain this to them.
Angie Davidson
Further information:
New research on the link between food and lupus
General advice on diet and lupus.
Can you actually run a marathon for us??
The content on this blog should not be seen as a substitute for medical advice. If you have, or think you may have lupus, always seek advice on a qualified physician. Find out more in our Terms of Use.
