With lupus flares, atypical is the norm
In looking at our survey results, it’s hard for people to tell how long a flare will last. Part of that difficulty comes from understanding exactly what a lupus flare is. There are infographics on the internet and top 10 lists of lupus flare signs, many of which are aspects of measurable disease activity scales. But, as Dr. Jamal Mikdashi and Dr. Ola Nived wrote in their 2015 article:
Measuring lupus disease activity accurately remains a challenging and demanding task given the complex multi-system nature of lupus, an illness known for its variability between patients and within the same patient over time.
Researchers work to find truly equatable measures of disease activity to help make comparisons of treatment effectiveness. And, these measures can then be defined as “end points” for clinical trials – which are clearly defined clinical goals.
Clearly, lupus flares are complicated and diverse in nature and per person. For insights from top lupus bloggers into some effective strategies for coping with flares, see our article on Managing Lupus Flares.
I have also been diagnosed with Rheumatoid Arthritis, so it is often hard to distinguish between the two.
I’m interested in what they told you for with having multiple autoimmune diseases. Did they ever consider Ankylosing Spondylitis?
Find it frustrating when you doctor presents you with this diagnosis but does not provide information as to what to expect or what to look for when dealing with this disease. You are left to your own devices to figure out what is going on in your body or what is associated with Lupus or nothing to be concerned about.
I agree. I have just been diagnosed and I am not sure where to start. I feel I should research what it is and what to expect but I am not sure of reliable resources
The hardest part is that it seems everyone’s symptoms and flares have some common elements, but also many individual symptoms
Some of the time my brain become psychotic when entering a flare-up. Also I have trouble with my vision and my body aches over. I might have a temperature. Chronic fatigue. Very tired. Depression. And then about a week into it, the flair vaporizes. It’s creepy, yet I listen to my body and rest, eat right, drink a lot of water and talk with family or close friends about it.
You sound like me. I felt like I wrote this. Its like your mind is in the Twilight zone. It makes me sad. My body hurts and I try not to limp in front of people.
Your lupus sounds uncontrolled. It might be that your medication needs adjustment
2 weeks sounds about right … but every month ( 1/2 the time) . When not flaring, I’m catching up with everything I put on the back burner when ‘flaring’
Exactly!!! It’s a vicious circl!! And I take care of my aging parents. With this situation my flares are constant. I have about 1 good day a week.
I have lupus and Raynaud’s I have so much pain it’s hard to do anything in this much pain help me please
Ask your doctor to refer you to pain management. You might need steroids for awhile as well
I have pain and fatigue everyday due to fibromyalgia, but when I have a lupus flare up, oh boy… I don’t get out of bed. I sleep all day and night, and if I’m lucky I eat or bathe. This last one lasted 3 days. I know when they are over, it’s when I feel like getting out of bed and doing a little something. Luckily, my family have seen my struggles and I have a great support system, I have no clue what I’d do otherwise. I wouldn’t wish this disease on my worse enemy.
Make sure they check your vitamin d level. When low it can cause muscle aches. I’ve found muscle relaxers help for fibro. Rest
THis was helpful, I wasn’t expecting the short term flares. Gotten very concerend that something else was seriously wrong with me and even went in to Urgent Care. Only to feel back to near normal the next day, hopping out of bed and ready to resume normal l