If you are asking what a lupus flare is chances are you have Lupus or you know someone who does! Maybe you are wondering about the ebbs and flow of Lupus and why one day you or that person can do this or that and another day it is out of the question!
What is a lupus flare? A Lupus flare is an increase in disease activity. This is measurable and will show in blood tests and/or in an increase in the severity of symptoms. Lupus tends to go in cycles of remission, little or no disease activity and flares, increased symptoms.
Having a flare-up will look different for everyone because it depends on your symptoms and type of Lupus. If you have been in a good long remission it will be disappointing and alarming to be in a flare, if this is the case it is good to check in with your doctor to see if you need a meds review. It might also be a good time to see if you can work out why you are flaring, often we just flare for no good reason and it can feel like we have absolutely no control.
Later in this article, I would like to look at possible triggers for Lupus flares, can we stop them? And how long will they last! But us Lupies know there is not always a reason or a solution and sometimes we need to just be patient and let ourselves off the hook!
Flares are difficult to explain as if you go in and out of flares fairly quickly it can seem to others that you are faking or dramatizing. At the moment my flares last a few days at a time but I have them often, so I just started running and then went into a week-long flare and was woman down, having to rest, taking painkillers, struggling to sleep, itching like mad, hot/cold, etc but then a few days later I was up and back running again. I work from home, for myself so I didn’t have colleagues wandering what was going on but even my bestie was asking how come I told her I was really poorly last week and now I’m back running again?
It’s a tough one to explain, I have learned to listen to my body and to know when to push through and when to rest, sometimes I have a massive surge of energy before a flare and my hubby is like ‘uh oh are you gonna get ill?’ But I feel great if a little manic then bang in a flare and all the plans I enthusiastically made are left undone!
I’m developing a thick skin, I don’t have to prove I’m poorly or well, I don’t need others approval to rest, up my meds, cry with the pain, I don’t need to show that I’m better for now and full of energy! I am grateful I am not ill all the time I know some of you just drag on with symptoms non-stop and I really feel for you.
I also know that if you don’t have good support around you and people who have taken the time to understand the up and down and unpredictability of Lupus is hard to deal with! Check out this article for some practical suggestions for living well with Lupus. I hope that some of the suggestions might help you and that you will feel supported in your journey even just a little bit.
What does a Lupus flare feel like?
It will feel different to different people and also might be different from one flare to another! Helpful huh!! So you could get an arthritis flare-up, breathless, low-grade fever but no infection, mouth ulcers or sores, nose sores, rashes, swollen extremities and eyes, your organs could become involved causing kidney problems, heart or lung problems.
You might get some neurological problems and mood problems since Lupus can affect the brain. Of course, you will probably feel exhausted the saying ‘there’s no tired like Lupus tired’ is so apt!
Your hair might get thinner and just raggy, actually know as ‘Lupus hair’. Nails might get brittle or even fall off!
Intense itching might be one of your symptoms or digestive problems or how about intense muscle pain! It really feels like the list is endless!
Since I got Hydroxychlorinique and changed my diet my flares last a week instead of months and the severity is a lot less still hard to deal with but definitely better.
How long does a lupus flare last?
Ahhh how long is a piece of string? It depends before I got diagnosed and on meds and changed my diet I could flare uncontrollably for months at a time. When I first starting having symptoms I would flare but then be without symptoms for years!
I think it also depends on what triggered it and what you can do about it. So if you lost a loved one, for instance, this would probably bring on a flare and you might have all sorts of arrangements to deal with and whatnot, so this we could expect to be a challenging flare and it might not start until things calm down a bit, you can still try to manage it though even in this awful scenario. Trying to get rest, meditation, working with your doctor, eating well, all of those things will help to some degree and it can also help you to feel more in control at a time when so much is out of your control.
I sometimes get a flare after an enjoyable event, like a wedding or a party, it’s like I have had fun so Lupus pops by to remind me not to have too much fun! If I have something coming up I try to make sure I am rested for it and not stressed (trouble is I always get super excited and to the body that can feel like stress!) I avoid triggers, for me, wheat, sunlight, stress, etc and I make sure that afterward, I don’t arrange anything so I can rest. I do believe it limits the length of the flare and possibly the severity. It definitely helps me to feel more in control of my illness and that helps my mental health for sure.
How can I stop a Lupus flare?
Keeping on working with your doctor and taking your meds is a good start. Meds like Hydroxychlorinque build up what’s known as a ‘toxic load’ in the blood so it takes time for it to start to work and time for it to work fully. So taking your meds regularly can help keep the levels up so they work on your system.
Rest is vital so trying to not be overcommitted or get really tired can help, however, if you are like me insomnia will come before a flare, and it’s hard to get enough sleep when your body and brain just won’t let you! If I find I am starting to struggle to sleep I will practice good sleep hygiene, regular bedtime, off screens for an hour before bed, less caffeine, etc and I feel like sometimes I do calm my body down enough and I will have only a little flare but other times I do it all ‘right’ and the flare just comes anyway!
Keeping a good routine, a good diet, some exercise, tending to your mental health, and generally looking after yourself will keep you on a smoother path but sometimes you will flare and it’s not your fault if you do!
What triggers a Lupus flare?
So many triggers! And they will be different for each of us and different things will set you off at different times!
I have discovered that wheat is a trigger, I get digestive problems, my eyes sometimes swell and my joints rage! If I eat wheat it is usually a few days after that it hits me, the digestive stuff starts quickly but the joint pain and muscle pain will come a couple of days later and it lasts a while! You might also have a food trigger, I kept a diary and then did an elimination diet to see.
Sugar and artificial sweeteners seem to bring on intense muscle pain and spasms which in turn means I can’t rest and hey ho Lupus flare here I come!
Sunlight and fluorescent lighting, even winter sun would trigger a flare, I would turn red wherever the sun hit me and get rashes, my whole face would swell then the pain and fatigue would come BUT I have seen an improvement this year with that! If I went out in the sun during summertime I would need a UV parasol, sunblock and even then I would start to feel dizzy and nauseous! Sun coming through a window would do the same!
Stress, stress is a massive trigger for most people, we can’t always avoid it though but finding some ways to manage our stress is key.
Lack of sleep, another big trigger.
Illness, its so unfair you get hit with a bug or virus, and that’s bad enough but then ‘hello Lupus’ flare! I guess good hygiene and maybe vitamins will help and also getting flu shots if you can tolerate them, for some people the shots can cause a flare!
Remember I am not a doctor and your Lupus is unique to you so always try to work with your doctor to keep yourself well. Also, spend time working out your triggers and what helps you. I have given you some ideas but you are the best person to discover your triggers and it’s well worth the effort! You are worth the effort!
It might seem indulgent and a bit precious to be ensuring you get enough rest, or you eat a certain way, or you need a time out to meditate BUT the better you look after yourself the better you can function in your home and at work, the investment into your health is worth it.
You are likely to still have flares, of course, but maybe they will be less intense or less frequent.
Remember having lupus isn’t your fault and it is a difficult illness to deal with and often we don’t look sick! But sometimes we are sick, sometimes we can be very sick, but also sometimes we can be well, keep trying to understand your illness, knowledge is power! Keep trying to tame the beast and most of all keep looking after you, you are so worth it! xx