Can't get out of this flare

First off, I am so sorry you are dealing with a long flare. That's frustrating and painful, to say the least. It sounds like you are doing all you can to take care of your physical and mental health, so kudos on that. Have you talked to your doctor about this flare? You are doing everything on your end to get things under control, but it may be time to call in some reinforcements, if possible.

You are not alone in experiencing a seemingly endless flare. Unfortunately, it *does* happen. There is hope that you can get to the end of this, but I can't offer any guarantees or timelines. Here's some interesting basic information gathered from our community members on flares and remissions -- https://lupus.net/clinical/lupus-remission. Here's a compilation of contributor tips on dealing with a flare (keep in mind, you are already doing a number of the listed suggestions, but there may be some new-to-you tips to try) -- https://lupus.net/living/flares-coping. Here's one more peice on flares that I thought you might find interesting -- https://lupus.net/living/spondylitis-flare-up. I can't tell you anything about your Lupus that you don't already know. And it sounds like you are working hard to manage this flare. Don't hesitate to reach out to others just to talk through your frustrations and pain. And again, talk to your doctor (if you haven't already). Living with chronic pain is very taxing, as you know. He/she may have some suggestions for offering you some relief.

Hang in there, and may this flare take a hike very, very soon!

Best, Erin, Team Member.

Oh goodness, that’s miserable! I know it’s been awhile since you posted this. But I wanted to throw in my experience. There have been many times in the last 12+ years I’ve experienced this. When this happens it’s important to talk to your rheumatologist. They will probably want to see you in person. Which isn’t always handy. But that is what it is!! Usually I would end up on the most dreaded drug among many of us, prednisone. As much as the majority of hate it so much, it really does help! It really sounds like you are doing everything you can. I will share some things that help me when I’m going to be in the sun at all. Bc I know the sun is always going to cause a flare for me. First, sunscreen is a MUST. I don’t necessarily have a favorite body sun screen but I really like a tinted sunscreen for my face. It gives me a little color but also protects my face. I always make sure that I’m covered fully. It looks ridiculous and I get so many looks. But in the end it’s about protecting my body not necessarily how I look. I found that means long sleeve button ups (think “dressy” shirts) work so well. They cover me but also aren’t so thick that causes me to overheat. And a maxi skirt/dress rather then pants. It gives better air flow lol. Anyway, you are probably doing these things and know what I’ve shared. But just wanted to share in case you or someone else might find it helpful!

Amber RN, BSN, Team Member

As a nurse practitioner, I understand the nutrition and self care thing. If that was enough, I wouldn't be on the sight. I had 2 useless rheumatologists who eluded to this is my fault in some way. I have a dermatologist and rheumatologist who has a working differential of paraneoplastic syndrome. I have 1 or 2 specialists who balk at this because it is too rare for me to have. Just like cancer 4 times if rare. I get your desire for patient autonomy and wanted to be "responsible" for your diseas, but this sounds like torture. In my practice, I find it better to treat the disease than to only help the patient deal with the symptoms and accept the worst of it because in some way, it is mental-illness based. Interestingly, this did not seem to be the case as much in Texas as it is on the west coast. The whole blame the victim thing seems to be more regional. I wonder if you are not taking medication because you believe you have to deal with the pain more than have remission from it. I'm sitting here considering the emergency department but I want neurology to assess how much I am suffering. I see them Monday and it's Saturday. I feel like I'm in a 48 hour CT, waiting like at MD Anderson, biding my time, and thinking this too shall pass and then I can take Skipper the Geriatric Chihuahua on a walk. Sheila Smith, FNP-BC, CEo Peoples Community Clinic of Newberg, Oregon.

Megan, I just wanted to check in and see how things are going!?! Have you been able to get some good rest? How is your pain?!? I can relate to so many of your issues. My depression and pain have been really bad lately. hope things are going better. Sending Big hugs!

Amber RN, BSN, Team Member