Thursday, December 29, 2011

Fatigue VS Flare

T-cell image found here. 

I received an email from Vivian yesterday, in which she asked this excellent question:

Julia,  How do you tell a real Flare from just feeling rotten for several days?

Wow. That's a really good one. And I'm still mulling over my answer. Here's how the Lupus Foundation of America defines the term flare:

“A flare is a measurable increase in disease activity in one or more organ systems involving new or worse clinical signs and symptoms and/or laboratory measurements. It must be considered clinically significant by the assessor and usually there would be at least consideration of a change or an increase in treatment.”

For most of us, as we gain more experiences with our body's reaction to Sjogren's syndrome and other autoimmune diseases, we become more proficient in reading the signals that our bodies are sending to us. Unfortunately, this means that we have to actually experience several flares vs. other illnesses vs. exceeding our energy limits before we can tell the differences.

I think that in my particular case, what I am experiencing right now is a direct consequence of just stretching my energy reserves too far. I know this only because it happens to me repeatedly and I am a very slow learner.....

When my energy levels are depleted, the only thing that can restore them is two or three days in which I do the bare minimum things: I dress. I eat. I sleep. I sleep some more. And sleep some more. And each day I try to objectively gauge my response to slowly increased activity. If I feel my face go ice-cold and my skin becomes clammy and sweaty, I head back to bed pronto. If not - then I try to slowly increase what I do each day until I reach the activity level that is mostly normal for me. Today, I am able to do more than I have been able to do over the last two days, which tells me that I am successfully replenishing my energy stores.

So how is this different than a flare? I suspect that for each of us, the answer is unique to our own disease experience.

For me, a flare is accompanied by more symptoms than just the need for rest, exercise intolerance, and increased brain fog. I usually run a low-grade fever (100 degrees f. or thereabouts) and experience malaise - that shivery, achey, "coming-down-with-the-flu" feeling that doesn't respond to tylenol or ibuprofen. My joints hurt more than usual. It's one of those rare occasions when my appetite goes away. If I look at John and tell him that I'm too tired to eat, he knows that I'm heading into a flare. I may have more swelling in my finger joints and may develop more skin lesions.

My flares last longer than just a couple of days, and when I'm fairly certain that I'm in a flare, I contact my rheumatologist, who usually has me come in for an appointment which includes an exam and possibly lab work or other diagnostic tests to measure my disease activity.

In the past, my doctors have instructed me to increase and then decrease my prednisone dosage to ease some of my flare symptoms. This is commonly referred to as a "burst and taper" treatment, and has been helpful for me.

What answers would you have for Vivian? How can you tell the differences in your disease activity? And how do you ease yourself back into normalcy?

Hang in there, Vivian. We all know how you feel, having been there and done that.

Keep us posted.


Anita Rowe Stafford said...

I think you have described the differences very well Julia!

Connie said...

Thank you Julia, that described it very well for me too. Hope you feel better soon.

annie said...

You've perfectly described what a flare feels like to me, personally. Lack of energy, aching muscles and joints, migraine-like headaches, low-grade fever, and that brain fog! I usually do absolutely nothing while feeling this sick, and this does help with recouping health and energy.Sometimes this happens because we overdo, or it happens maybe because our bodies have a certain limit and we've surpassed it. Hope everyone will be better soon.

ShEiLa said...

Your insight is most useful for me. I relate to your experience. I do the fever thing... I am totally trying to get back on top after Christmas Eve, Christmas, Mount Charleston with the kids the day after... and a birthday party the day after that. 4 days in a row at a steady pace means yesterday and today with a headache that won't quit and being overly exhausted. I knew I would pay for it in the long run.