Flare ups?

Welcome @ladybug623, Sorry to hear you haven't found any answers yet. You mentioned you have been diagnosed with Lupus but you are not sure you agree. From what I've read, it can be difficult to diagnose. Mayo Clinic has some information on Lupus that explains the diagnosis and symptoms - https://www.mayoclinic.org/diseases-conditions/lupus/symptoms-causes/syc-20365789.

There are quite a few member discussions and comments on flare ups that you might want to scan through while you wait for members to respond. Here is a link to the discussions and comments - https://connect.mayoclinic.org/search/?search=autoimmune+%2Bflare+ups. I also found an article on the Global Autoimmune Institute site that talks about your question.
-- Outbursts in Autoimmunity: Disease Flare-ups: https://www.autoimmuneinstitute.org/articles/outbursts-in-autoimmunity-disease-flare-ups/

How long have you been dealing with the flare ups?

Dear John,
thanks for the in depth reply!
I'm not sure I agree with the lupus diagnosis because I don't have the typical symptoms, but rather symptoms from other auto immune diseases.
I've had flare ups for between 6 to 8 years now, I'm not sure because at first I didn't know what a flare up was.
There's a new rheumatologist clinic that just opened up in my town, so I'm thinking about going there for their opinion.
I came here hoping to see where I fit in the spectrum.
My latest flare up involved a lymph node under my jaw swelling up and hurting. After three weeks of pain, an ultrasound, a CT and a biopsy, it was determined that there's no malignancy. In fact it's starting to shrink and resolve itself (verified by ENT Dr). After researching online, I see that autoimmune can cause this.
Now I have lots of questions and am hoping to hear other people's stories.
Thanks for answering me!

"Flare ups" can mean a lot of different things. They are, for example, a bit messier with colitis. It would be good to keep a journal your symptoms/food/stress/etc to see if there are any possible triggers. I have a few autoimmune diseases. I had skin rashes, reflux, and enlarged lymph nodes in my armpits for many years; they went away a few months after I went gluten free (celiac was undiagnosed). I have kept a food log for 15 years so when colitis started 8 years ago I saw that legumes and NSAIDs caused flares. One issue with autoimmune diseases is that symptoms vary a lot from one person to the next. It would likely be good to get a second opinion from another rheumatologist.

The only consistency with my flareups is their constant inconsistency. Right now flareups are particularly diminishing my vision —-and my cornea specialist can find nothing wrong. i just emailed him this am to ask if more testing can be done

Vision
flare ups really frustrated me today. For hours today i couldn’t see and was very sensitive to light. By the end of the afternoon, i contacted my neuro-optjamologist to arrange some followup up care

Hi,
I'm done with flare ups and life is one big never ending flare up now! Some features are now permanent while others come and go at random. Very rarely I might have a few hours when they all decide to take a rest and life for a fleeting moment returns to "normal". Happened twice this year and it makes you hope it might happen again sometime soon. Three hours isn't many but they do beat none and those 3 hours get packed with everything I can stuff into them. It proveded just how much interferance it has on my blood pressure. It dropped from 186/114 to 126/86 then started building again as time ticked by and the symptoms returned. I have tried to replicate this with no joy. No amount of will power makes the slightest bit of difference. I'm resigned to being just along for the ride.
Cheers

I have never associated my orthostatic b/p as being a fibromyalgia problem? I have been taking my b/p morning and night sitting and standing just to see how much med to take. My diastolic has gone up recently. My b/p has dropped as much as 50 points. I can't keep my stolic normal or its to low upon standing.