Managing Flares
Content Warning: Discussion of severe pain which may be triggering for some readers.
A dark image of Emma laying in bed during a flare holding her water bottle and covered with blankets. Her blinds are all closed which is making the lighting dark.
*I am not sponsored by any of the brands of the products mentioned in this article.
Managing flares can be a daunting task because if you don’t know what’s causing your symptoms, you don’t know how long you might remain in the flare, and you don’t know how to avoid triggering one.
As a person who knows some triggers for my own illness, and also has a lot of other triggers that are completely unknown, I have come up with different “protocols” that I follow depending on what type of flare I’m having and how long it’s lasting.
I wanted to share these since they can apply to anyone who has a chronic illness in order to help you feel more comfortable (even if that’s just mentally) as you go through a flare.
DURATION OF FLARES
My flares have two different time durations which I want to clarify here because this does change my protocol slightly.
I have “week-long flares” which can last 1-2 weeks of me being usually mostly immobilized in bed and unable to move but symptoms can vary depending on the type of flare.
I also have “month-long flares” which can last at a minimum 5 ½ months and at the longest (so far) 7 ½ months. These are usually much more severe and have lots of flares inside of the overarching flare. These always come at random and require special attention since they can be really dangerous.
TYPES OF FLARES
I personally have labeled the types of flares that I may have and if I know some of the triggers for it or not. It took a lot of time to figure out some of the triggers for some of these and also, again, some are still unknown.
Abdominal Flare: These are always the ones responsible for the large month-long flares. The cause for the month-long flares is still unknown. These flares can also come in the week-long version and are typically triggered by eating anything.
Nausea Flare: These are typically in tandem with the abdominal flares and one can spur the other (and vice versa). These typically include feeling extremely nauseous with any movement and can result in repetitive dry heaving for days.
Breathing Flare: An unknown cause and trigger for this flare which results in either inflammation of a nearby organ (such as a stomach or liver) or excess fluid pressing against my diaphragm and sometimes lungs which result in painful breathing and shortness of breath. These have not been seen in the month-long form (yet) and are typically 1-2 weeks long.
Esophagus Flare: These can last both in the month-long or week-long form and can be triggered by the abdominal flare but is known TO trigger nausea flares. This is when my esophagus muscles start spasming or a pill or food item is stuck for many hours which results in a lot of pain all the way down the esophagus and usually causes nausea over time.
Inflammation Flare: An unknown cause and trigger for these which results in inflammation in my hands, feet, gums, and usually fluid buildup in my back which links to the breathing flares. These typically are only seen in the week-long form.
Fatigue Flare: Also, typically an unknown cause but sometimes if I am aware that I did an activity two days in a row, it can cause a fatigue flare. These typically only last a week or two and come on their own without any of the other flare types in this form. In the month-long form, this comes months after the abdominal flare.
Tremor Flare: These are very unknown both in the cause and in what they trigger. These typically are in the week-long duration and visually can sometimes look like seizures. We have found that sometimes me staying off of my TPN for too long can cause these.
*Now within this flare category list, I am not including my more “short-term” duration issues like my hypoglycemia and dysautonomia.
SEVERITY LEVEL BREAKDOWN
Based on the type of flare and the severity of the symptoms, I go to one of these protocols in order to try and make myself as comfortable as I can as I wait for the flare to pass.
Both duration types can be a variety of these levels or can remain as one of these levels the whole time.
*I do have some medications but since my primary condition is still undiagnosed, there’s nothing we can really do to shorten the time or make the flares less severe.
LEVEL 1:
Description: This is my base level since my flare from June 2021.
What it means: I can usually do a good majority of the things I need to accomplish in a day, but I need to take lots of breaks and either do tasks while laying down in bed or take breaks resting in bed.
Tips: I try to use disposable silverware and dishes because I don’t have the energy to be able to wash dishes. It is not optimal for the environment, but it becomes necessary when health is like this.
Watch Out for: It is a very thin line to be moved into one of the other levels dependent on how much I do in a day energy-wise or if I accidentally provoke a flare. I try to be very conscious of the signals my body’s giving me and make sure that I am resting enough. (Read more on how I rest in “Learning To Rest-As A Workaholic”)
LEVEL 2:
Description: This is when I am in a “light flare”.
What it means: I am typically not very mobile at this stage, but I can get up to use the restroom freely and can answer the door. If it’s necessary to get groceries I may go across the street or deliver them to my building and head downstairs. This stage allows me to have light conversational chatting.
Tips: I usually can choose to nap, watch some TV, play my Nintendo Switch, or color a little bit in my coloring book. If I feel like talking to someone, I might FaceTime my dad or another family member and converse about topics I’m passionate about or enjoy.
Watch Out for: This can very easily be a transitional stage to move into one of the higher levels of flares without much warning. I try to remain resting and get as much sleep as I can during this level.
LEVEL 3:
Description: This is the “middle of the road” stage that my flares can sometimes start at.
What it means: I am in a more severe state, so mobility is more limited. I would not be able to leave my apartment and trips to the bathroom would be calculated with how absolutely necessary they are. I am able to do light mental tasks, but conversation is limited to solely necessary phrases and is not conversational.
Tips: I remain in bed and only watch comfort shows on TV (like Friends) because I need something that I don’t really need to follow. If I have some more energy I might do a couple pages from a sticker-by-number book (which you can get from Amazon).
LEVEL 4:
Description: This is a “high pain” stage is when I am dealing with extreme pain and symptomology that completely immobilizes me. These typically only occur with abdominal flares.
What it means: I am in my very severe form and have taken my oxycodone at this point. The oxycodone unfortunately can sometimes bring my pain level down a level but everything else still remains. I am not able to answer my apartment door and will use my phone to unlock it if my nurse is coming by. I will not be talking at all at this point and will not be moving. My TPN will be changed in bed and bathroom visits will usually result in a lot of discomfort to get there. I am likely unable to stand up so movement might involve crawling or hunching over and sitting every few feet.
Tips: For trips to the bathroom, I place my TPN bag on my rolling med cart so I do not have to bear the weight of the bag which can cause more fatigue and pain. The backpack comes into bed with me and is not hung on my IV pole, so I have closer access to it to retrieve medications and reach my TPN. A trash can may also be in the bed with me to vomit inside of without having to get up. For TV, I usually put on my phone a thriller movie or something really gripping because this can help get me to focus on the film and draw my attention away a bit from my symptoms (until they get too bad to ignore which results in me dealing with the wave and then going back to the movie when it calms back down to this level). My med cart also remains by my bedside, and I have all of my medical equipment to check my temperature, blood pressure, glucose, heart rate, and oxygenation to make sure I am remaining safe.
Watch Out for: I’m keeping an extremely close eye on my symptoms to make sure if anything gets too dangerous or if it’s something I’m not comfortable handling on my own, I can call 911. My phone never leaves my side so I can call for help.
LEVEL 5:
Description: This is my flare’s most severe form. It can be highly uncomfortable and sometimes 911 may be called. These typically only occur with abdominal flares.
What it means: I am in my most severe state and this state can fluctuate between level 4 and spike here at level 5. However, it can remain here- I’ve had weeks to months where it has. At this stage I’ve taken all of my medications to help ease my symptoms as best as I can and handle whatever else comes at me. The house is prepped the same as in stage 4. I am not talking at this stage, and I have spurts of movement due to pain symptoms and adrenaline.
Tips: This stage is when my body is in fight-or-flight which means I cannot distract myself in this stage. It is completely the body taking over and I’m inside to just deal with it and watch. To try and make myself as comfortable as I can, I have my TPN in bed and plenty of trash can liners for vomiting. My bedroom door is left open along with the door to get to my bathroom (left open preemptively in an earlier stage if possible) so emergency services can easily find me and so I can get to the bathroom quickly. I do deep breathing techniques to try and help calm my body down since I usually get hives at this point wherever the pain is located. This is not a stage in which you can sleep so I do a lot of self-soothing gestures like rocking back and forth sitting upright. I usually know I might not be sleeping for a couple days in a row so if I do get a chance to sleep (even if it’s during the day) I take it. I typically move around a lot in this stage because of the discomfort and adrenaline and my body tends to make a lot of sounds that I have no control over-such as screaming or groaning.
Watch Out for: My body sometimes can get vasovagal at this stage and sometimes I almost pass out from the pain so if I feel this coming on, I call my dad on the phone so he can call 911 if he doesn’t hear me respond on the other end of the phone. My dad is used to communicating with me when I’m in this stage so he’ll usually lead a breathing exercise either in person or on the phone and will help move me (again if he's in person with me at the time). Similarly, to level 4, I’m keeping an extremely close eye on my symptoms to make sure if anything gets too dangerous or if it’s something I’m not comfortable handling on my own, I can call 911. My phone never leaves my side so I can call for help.
THE IMPORTANCE OF A CELLPHONE
My cellphone comes with me everywhere because ultimately it is and has been a life saving device. Even if it’s a regular day and I’m heading from one room to another, I make sure to go back and grab my phone because I’ve been in situations before where a level 5 flare attack strikes out of nowhere and I have trouble being able to reach my phone to call for help.
iPhone has a feature on its ‘contacts’ app which allows you to add in a medical ID which you can opt for it to be sent to the 911 operator when you call. I like having all of my information on my phone either in the medical ID or on a note in my phone because there’ve been scenarios when I am unable to talk when the EMTs arrive or when I go to the ER. The medical ID feature can also be selected to notify your emergency contact when you call 911 which I find helpful since I live in another state from my parents.
I ALWAYS have either my phone charger or a backup portable charger (that is charged) to bring with me when I go to the ER because I can’t tell you the number of times my phone has died in an emergency.
There are also a lot of apps that I use that are helpful in tracking other things relative to my conditions since living with a chronic illness means years of symptoms. This makes it easy to reference back to in order to find patterns or potential causes that can lead to better awareness of your symptoms and condition.
APPS: (*I am not sponsored by any of these apps and my opinions of them are solely my own.)
-Notes App: I have been keeping a daily journal of symptomology and potential causes for 2 years now and this has been extremely helpful in my doctors and I finding patterns and triggers for some of my illnesses.
-Medisafe: This app keeps track of when to take your medications and can give you reminders for them. Another feature that I use a lot is it can give you estimated drug interactions with other medications you are taking. This is helpful for me to know which medications I should not take close together to each other since they could interact badly.
-PCal: This is an app to log your bowel movements which is extremely helpful for my medical team and I to be able to see the irregularities that might happen while on TPN or during flares.
-Eve: Most people have period apps to track their menstrual cycles but if you do not, I highly recommend some form to track it. We found out that while on TPN I’ve begun missing cycles so this wouldn’t have been noticed if I hadn’t tracked it. (Also, I just use the free version of this app)
FINAL THOUGHTS
Managing flares can be a scary task at first but once you get into the routine of it, you know how to accommodate your surroundings to best support your needs during these times.
I hope that with these breakdowns you might’ve been able to find an activity or something that can better prepare you when handling and dealing with a flare.