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 life.
I am new to systemic lupus.. just diagnosed in February 2020. My flares can come and go, and some flares are like “mini flares” where I get only 2-3 symptoms for a few days. Fatigue, achy joints and headaches. Or, I can get mouth sores, depression, and body aches.. it can be all so random. This disease is so unpredictable. I feel that my doctor really did not fully prepare me for what I would be living with. She prescribed injections and medications, and then sent me on my way. I don’t know sometimes if what I am feeling is a flare, or is it the Sojgrens’s that I have been diagnosed with as well? I would love to get my life back.
Flares are usually abrupt and severe pain. W severe fatigue, mouth sores, etc. They are very debilitating. You will have to modify your life and schedule according to your abilities. It is life changing. If you don’t see improvement maybe adjusting the dose of medication may be necessary. ALWAYS be firm with your doctor about how you feel… do not allow them to dismiss you and see you infrequently if you are uncontrolled.
Same sor me. I have both and though I did a lot of research I was not expecting such a roller coaster on the symptoms. Mine do seem to get very much effected by barometer pressure changes in the weather – which is a well accepted in the medical community as a nenvironmental causal.
I tested positive for the lupus antibody and am waiting to see a doctor. Both of my knees have hurt to the point that a cannot get up if I bend at the knees it has been like that since July. Both of my hands are also numb a good portion of the day. My grandma had lupus. Does this sound like lupus?
You need more tests to make a diagnosis
As I get older I have more flare ups…weather changes increase chances of flare up
Absolutely – any barometeric pressure change can bring on symtoms. I was never told this by doctor, but when I asked she confirmed and I have found lots of reserach to confirm, by well respected medical facilities.
I hate this! I don’t know what I did to make my body hurt it’s own cells so bad! I can’t make it better or “will” it to stop. During these flares, I just wish I would die at times. I’m in fear when I feel healthy that another one is right around the corner.
It was therapeutic to read the entries from other lupus sufferers. I have constant mouth issues and now my teeth are becoming affected. I have fatigue and feel guilty when I take a nap during the day.
I deal with mouth sores a lot as well. I can have one and then it’s gone by morning and maybe another in a different spot? They don’t hurt like canker sores and are strangely different. Is this common or even sound right?
This sounds sooo like my mouth sores interesting to read.
These comments are very helpful realizing, I am not alone.
I have lupus.
Just coming off of a flare. Mine seem to last about five days to a week. I’ve been struggling with low oxygen – sometimes. After a battery of pulmonary test that have been inclusive, I started connecting the dots with my flares. It is during my flares that my O2 levels fall to between the mid-70s and mid-80s. When the flare is over, my O2 levels are back up over 90%. During my flares, I also have hair loss, joint pain, nasal and mouth sores, fatigue and headaches. The good thing about figuring out my O2 is that I only need to use my supplemental oxygen when I’m having a flare rather than all the time like I was before, not knowing when my oxygen was going to be low.
Has anyone considered tick or other insect-borne bacterial infections??! I have not been diagnosed with anything other than Seronegative Arthritis. Despite not having a Lupus diagnosis I have had all the symptoms discussed above for over 20 years. My illness is advanced and although I am 45, it has almost killed me 3 times. I have been on antibiotics for over a year and just started to clear a number of infections in a number of my different systems- respiratory, inner ear, stomach, g.I tract, skin….I was unaware symptomatically that I had any latent infections!? My dr and I just had a hunch that there was an underlying infection causing the debilitating pain and arthritis. As the infections leave my system, I can see the spirochetes leaving my skin, and I now know for certain it is Lyme disease…. But now I’m now considering that perhaps Lupus is not genetic but acquired through ticks or other biting insects and could be curable? Has anyone theorized about this?!
omg I’m glad I read this. I’ve had some symptoms of this for year I e tiredness but been able to shrugg it off.
however may I had what looked like a tick bite. I had treatment for it and ever since my symptoms have got worse and worse.
my current tests have shown weakly positive which doesn’t rule lupus out or in. currently awaiting further tests
omg I’m glad I read this. I’ve had some symptoms of this for year I e tiredness but been able to shrugg it off.
however may I had what looked like a tick bite. I had treatment for it and ever since my symptoms have got worse and worse.
my current tests have shown weakly positive which doesn’t rule lupus out or in. currently awaiting further tests
omg I’m glad I read this. I’ve had some symptoms of this for year I e tiredness but been able to shrugg it off.
however may I had what looked like a tick bite. I had treatment for it and ever since my symptoms have got worse and worse.
my current tests have shown weakly positive which doesn’t rule lupus out or in. currently awaiting further tests
omg I’m glad I read this. I’ve had some symptoms of this for year I e tiredness but been able to shrugg it off.
however may I had what looked like a tick bite. I had treatment for it and ever since my symptoms have got worse and worse.
my current tests have shown weakly positive which doesn’t rule lupus out or in. currently awaiting further tests
omg I’m glad I read this. I’ve had some symptoms of this for year I e tiredness but been able to shrugg it off.
however may I had what looked like a tick bite. I had treatment for it and ever since my symptoms have got worse and worse.
my current tests have shown weakly positive which doesn’t rule lupus out or in. currently awaiting further tests
I’m only 3 weeks into a horrible rash – late 70’s & didn’t expect this. Blood tests show Lupus and Sjogren’s Syndrom. Started taking Hydroxychloraquin and using a cream. My doctor put me on Prednisone for 30 days – I had to QUIT taking it after only 4 days, horrible gut problems. Seeing a rheumatologist in a few days, probably more blood tests. I don’t have pain, just look like a walking burn victim who ITCHES. I really don’t know what to expect except that I’ve ordered SPF shirts (TEXAS SUN!) and wear hats or carry an umbrelle outside. Basically gardening only at night.
I’m only 3 weeks into a horrible rash – late 70’s & didn’t expect this. Blood tests show Lupus and Sjogren’s Syndrom. Started taking Hydroxychloraquin and using a cream. My doctor put me on Prednisone for 30 days – I had to QUIT taking it after only 4 days, horrible gut problems. Seeing a rheumatologist in a few days, probably more blood tests. I don’t have pain, just look like a walking burn victim who ITCHES. I really don’t know what to expect except that I’ve ordered SPF shirts (TEXAS SUN!) and wear hats or carry an umbrelle outside. Basically gardening only at night.
I’m recovering from a 3-week flare. One of the worst I’ve had. But I always do recover. I got Lupus in May 2001. As I was unable to take any medication for it, the odds were that I’d be dead within 5 years. So much for odds! Sometimes I say, “Lord, get me out of here,” but I guess it’s not my time yet!