Stress and Flares

To start off I just found out my very dear and close friend lost her dad last night. So I’m just heart broken and I can feel my body tensing up and “flaring”. And on top of all that I’m so behind in class work from being sick, doctors appointments, and tests. Don’t know how to keep the stress down.

They finally think the reason I haven’t been able to eat was because I am constipated even though I’m taking stuff for it! SIGH! So now I’m dealing with all that. I also have a question when you have “flares” what are they like? Do your labs change, low grade temps, more facial rash etc??? My labs are fine and show no sign of inflammation yet I feel like a Crum bum everday! No low grade temp either but I can hardly do anything I’m lucky to have a day to clean my place up or go shopping with friends. On my really “bad” days my whole body doesn’t want to work and I can’t even get out of bed. So confused at what a flare really is…

Flares are swelling…malaise…deep ache…massive pain…immobile…sadness…anxiety…snappy…mean…cant shower…cant eat…crying…call your rheumatoid dr…and your primary…beg them for support…thats what I do…I get prednisone and pain meds…good luck…

Hi Louters
I am sorry to hear you are not feeling well. I think everyone experiences flares differently. I have no energy and my thinking gets weird. I may have more anxiety which is different from “worry anxiety”. I do get more pain in my muscles my legs feel swollen. I think when ever our symptoms are getting stronger or more pronounced we might be heading for a flare. At that time I stop and rest a lot. So far this has helped I am in my flare time of year so I am paying close attention to my body .

Pain and being so tired I feel I just cannot deal with one more day of this life.

Ahhh.... The enigmatic, notorious, nagging, sucky flare.... They are different for everyone. That is part of what makes them so exasperating. My mind goes between... am I being lazy, (which is ludicrous) or am I having a flare... my body hurts, my mind hurts, and I feel very guilty and blame myself. this is not a good way to deal with a flare, by the way. In turn, I should love myself, give myself a warm bath, watch a tv program that makes me smile, and get lots of extra rest. Remember, they don't call this the invisible illness for nothing.

I'm glad you brought this up, Louters. I've been mulling on this myself. In November I had an excellent month, things seemed sooo much better, and I had such hope that perhaps this would be the new norm. But since then, I don't think I've had more than one decent week at a time, between two and three week spans of feeling off or wrong. Interestingly, now that I think about it, the end of November was about the time I remember starting to notice my malar rash too (what I now know is a malar rash... didn't know back then).

But I'm still confused on what would constitute a flare for me. How long would it last? Does two weeks of yuck count? One week? Or are my improvements just breathers during a long, drawn-out flare? Could a flare be why trying to walk me off my prednisone isn't working? How would my doctor know?

So many unanswerable questions, it's maddening. ::sighs::

Even when my pain was controlled by prednisone, I considered it a flare when I couldn’t get out of bed and slept all day. I’ve also had low grade temps and noticed the rash on face become more pronounced. I’ve had my hands swell up like balloons around the joints. I think all of those are flares, basically any time any of the symptoms get worse.
After one particularly nasty call from my mother (she told me I wasn’t trying hard enough) it upset me so much It set off a flare that lasted a week.
It’s easy to try to avoid stress …but almost impossible to do .

As everyone has said, each persons flares are different. I have been feeling somewhat better receiving the Benlysta infusions. But yesterday, I had been cleaning a little too much, and boom....instant flare. Mine, 'this time' hit me with pain all over, and my IBS kick up. Today we were going to my husbands family reunion, but I will not be able to go. I'm very disappointed that he will have to go by himself. I'm going to 'try' not to be too bumbed out by this, and stay home and take care of myself. That's all we can do. I liked the idea of a nice bath, and watching TV...maybe I can find a good movie.

Have a good week-end, if you can.

Thanks everyone! It feels good I am not "going crazy", everyday is a FLC day, and then there are days I cant even get out of bed. Its amazing how much you can hide behind a smile, makeup, and nice outfit! I am thankful for school and how it keeps my mind a going! I also started piano again and am enjoying letting go and just putting my feelings into my music!

Thanks so much for those words!! :) I will have to share them with my teacher I really love it!

Ann A. - I so related to your FLC message! According to my Dr my lupus is always “active”. I know everyday is a struggle. I have to work and since I am in healthcare I am on my feet 9-10 hours a day. No lunch. Don’t ask. It’s quite common in healthcare. I didn’t understand what a flare was. I too find it so very hard to get out of bed. Hips, knees and ankles kill me and I still have that heaviness in my chest even though on Colcrys twice a day. Crazy fatigue. Wake up with headache everyday. Wake in middle of night with nausea. I am thankful when it is a headache and not a migraine. I am thankful when I can breath without pain. I am thankful when I don’t feel a knife in my chest. I am thankful when I don’t have to go to ER. Ever since my 10 days in hospital last year I pray for my “regular” FLC days!

Thanks Ann A. I have seen it long ago, but will check it out again. I love funny movies that make me laugh really hard. It takes my mind off the 'pain', and PAIN.... Hope you have a good day. Thanks for the response

Ann A. said:

Dear bak

Having lived with lupus for so long, I have a list of movies that I use for the really sucky days. One of my favorites, for example, is Apollo 13. For some reason that I cannot explain that movie helps me to feel as though things will get better if I just hang on.

One of my favorite lines in the film is when they are interviewing James Lovell's mother in the nursing home and she says, "If they could put wings on a washing machine, my Jimmy could fly it."

It makes my mind go beyond what they show in the film and I imagine what it was like to grow up having a mom with so much confidence in you and your abilities. And it helps me to understand how he remains so calm and in charge in the face of such a crisis. I shed lots of tears watching this movie.

It encourages me to stay calm. Stay calm and hang on.

There are others. But I have a stack - now all digital - that I can turn to on a sucky day.

Good luck to everyone.