Chronic illnesses are not necessarily linear, as in Monday is better than Friday [or worse], or 2003 was better than 2013, an up, or down, progression with logical stopping points and an endpoint. Autoimmune diseases especially are prone to fluctuations that may have nothing to do with one’s general health, self-care routines, assistive devices, medications, diet, prayer, exercise or rest. Flares happen. Period. All we chronics can do is make our way through them and try to explain to those who need to know why we are down, down, down.
But of course, when you’re in a flare, it’s hard to do anything but cope and get the very basics done. If you can. I don’t mean grocery shopping but showering, standing long enough to microwave soup and sit long enough to eat it, answering the phone, getting dressed or, fuck!, combing your damn hair.
So what is a flare? For example, ankylosing spondylitis/AS:
Data show that the main symptoms of flare are pain (100% of groups), immobility (90%), fatigue (80%), and emotional symptoms (depression, withdrawal, anger) (75%). There are 2 types of flare: (1) localized: during which the symptoms affect one area; and (2) generalized: this is a severe event including all the above symptoms and a flu-like illness (fever, sweating) with hot, burning joints, muscle spasm, and increased sensitivity. All patients experience between one and 5 localized flares per year. Fifty-five percent of groups contained patients (n = 85) who experienced a generalized flare. The main perceived triggers of flare were stress (80%) and “overdoing it” (50%). Patients reported that a flare may last anywhere from a few days to a few weeks and relief from flare can be gained by analgesic injections (including opiates) from a doctor, relaxation, sleep, and cannabis (3 individuals) [Brophy and Calin].
This exacerbation of usual chronic symptoms and/or recurrence of intermittent symptoms can be mild or extreme, having fatigue at about a level 6, dragging but still able to function some of the time, or fatigue at 10, where you cannot lift your arms off the bed, opening your eyes at all may hurt, you’re too tired to eat even if food were brought to you, and, if pain is part of your chronic condition/illness, your pain feels like…well, you know you won’t die but really, really wish you would, or at least pass out for a few minutes of oblivion, which feels like relief if you look at it slant.
“Minor” flares may not feel so “minor”–a “minor” IBD flare, for example, may mean days of nausea, diarrhea and/or constipation, bloating, and/or vomiting and feels anything but “minor.” A “major,” “generalized,” or “systemic” flare can involve every single system in your body. No food agrees with any part of your digestive tract, no position is comfortable, no pain med or amount of heat/cold gives relief, walking is painful for 3, 4 or 5+ reasons, every move hurts because of a muscle or tendon or inflammation or joint tenderness or headaches. “Minor” is a spectrum. “Major” is beyond the spectrum and is, therefore, more brutal. And they can play tag-team:
One hundred and thirty-four people were followed up for 1216 person follow-up weeks and there were 71.4 flares per 100 person-weeks. Of these, 12 were major/generalized flares and 59.4 were minor/localized flares. People who experienced at least one major/generalized flare during the study period had worse disease during flare-free periods in terms of disease activity, impaired function, self-reported night pain and iritis compared with those who did not experience any major/generalized flares during the study. Major/generalized flares lasted for an average of 2.4 weeks (S.D. 2.7), and were preceded by and followed by a minor/localized flare in 92% (55/60) of cases [Cooksey et al].
I have what I call “localized” flares. Either the costochondritis acts up or the “IBS” or my spine and SI joints or plantar fascitiis and Achilles tendonitis. And/or my wrists. Maybe the localized flare will include 2 things, but usually no more than that. It can take a few days or a week to pull out of it. Which doesn’t mean I’m free of pain/symptoms, just some of the extra pain/inconvenience eases. Maybe I’ll go to the doctor for a steroid shot or a 3-day pack of steroids, especially if it’s the costochondritis–the inflammation and swelling can make productive coughing difficult so I’m at risk for pneumonia, and it’s hard to sleep when I feel like I can’t breathe.
With a localized flare, I can still drive myself to the doctor. A systemic flare? The fatigue is so bad, my thinking so clouded, my limbs so heavy and slow, I’m afraid to drive at all, so I have to be taken to the doctor. A shot of steroids, a 5-day pack of more steroids, shot of extra anti-inflammatory, extra muscle relaxants, a few days [or longer] sticking close to bed except for restorative yoga, bathroom breaks, water, food, entertainment/distraction that I bring back to bed with me. And it will take 1, 2, 4 weeks to, not get better, but get out of the deep systemic flare and back to my usual level of misery and rotating localized flares.
The results suggest that there are differences between the people who experience major flares compared with those who do not. Patients who reported major flares had significantly higher levels of disease activity during flare-free periods than those who did not report any major flares during the study period. The average duration of major/generalized flares was 2.4 weeks….Furthermore, it is possible that those who experience major flares already have more severe underlying disease or are at risk of developing more severe disease in the future. Our study format did not allow us to comment on the pattern of these participants’ disease flares or activity in the years preceding the study period. [Cooksey et al].
My first recognizable AS flare, the one that helped get me diagnosed, went on for months. My GP says she doesn’t think I’ve pulled out of these recurring localized and systemic flares since November 2014. 13 months now.
So I’m always in some kind or degree of flare.
Oh, I tried to forget the fibromyalgia/FM flares. Yes, those are different. A “deep systemic” flare in my definition is usually an AS + FM flare—problems above + blurry vision and/or light sensitivity [squinting behind dark sunglasses even on cloudy days], brain fog [difficulty thinking, making connections, remembering, etc.], headaches, depression [deep, dark, hard-to-move-against-gravity kind of depression], irritability [well duh], IBS, strange nervy pains and pokes and burning sensations all over, even more problems sleeping, a deeper throbbing in the pain. If my normal life feels like 6 on the 0-10 I-want-to-die scale, a localized flare pushes me to 7, 7.5, maybe 8 for a few hours or days, and a systemic flare, especially a “deep” one, starts at 9.5 and peaks at 11. Maybe 12. But if it’s that bad, I take anything I have that helps me sleep or zone out and just…wait. It’s all I can do. It’s what I do a lot of now.
Often a long-enough [whatever that means] AS flare sparks a concurrent FM flare. Or I push myself intellectually, socially, mentally and a FM flare stops me like death. And that flare sets off some localized AS flare(s).
It’s a full-time job.
Brophy, Sinead, and Andrei Calin. “Definition of disease flare in ankylosing spondylitis: the patients’ perspective.” [Abstract] The Journal of Rheumatology, 29.5 (2002): Web. Dec 2 2015. http://www.jrheum.org/content/29/5/954.abstract?ijkey=2dbf76e9ddc9639eb58ec5006eb4efe0fc861d76&keytype2=tf_ipsecsha.
Cooksey, Roxanne, Sinead Brophy, Mike B. Gravenor, Caroline J. Brooks, Claire L. Burrows, and Stefan Siebert. “Frequency and characteristics of disease flares in ankylosing spondylitis. Rheumatology, 49.5 (2009): Web. Dec 2 2015. http://rheumatology.oxfordjournals.org/content/49/5/929.full.
Stone, M. A., E. Pomeroy, A. Keat, R. Sengupta, S. Hickey, P. Dieppe, R. Gooberman-Hill, R. Mogg, J. Richardson, and R. D. Inman. “Assessment of the impact of flares in ankylosing spondylitis disease activity using the Flare Illustration.” Rheumatology, 47.8 (2008): Web. Dec 2 2015. http://rheumatology.oxfordjournals.org/content/47/8/1213.abstract?ijkey=1e1617a250c44b7d33b6d8e5b5c8b2bfbee55689&keytype2=tf_ipsecsha.
“Flare ups and burn out.” National Ankylosing Spondylitis Society (NASS) [UK]. December 2015: Web. Dec. 2, 2015. http://nass.co.uk/about-as/just-diagnosed/flare-ups-and-burn-out/.