POTS Flare-up Support

Flare-ups refer to periods of time where individuals in our community experience increased symptoms, that are usually preceded by a trigger or number of triggers. Flare-ups are temporary but can be very debilitating and make navigating illnesses like POTS painful, frustrating, and more challenging. Individuals with POTS may have periods of time where they experience minimal or reduced symptoms, and then after a known trigger such as an illness, overdoing it physically, or spending time in hot weather, may experience worsening symptoms. Flare-ups can be harsh reminders of POTS for those living with this chronic illness.

Please Do Not Question Their Flare-up

• Flare-ups are one of the most painful parts of this journey with POTS. Individuals with POTS may notice they have more symptom relief, begin to feel hopeful that this is their new baseline and “norm,” begin doing more and going out, and then experience a flare-up that involves severe symptoms quickly returning.

• It may be confusing to see them seem much better one day and then hours later or a day later see them unable to get out of bed, but this is part of what flare-ups with POTS can involve. Please do not question the symptom severity, as we’ve found our community is most likely going to minimize how they feel. If they don’t feel well, they really don’t feel well.

• Their 2/10 is often someone else’s 10/10, if not worse.

• What causes symptoms to flare-up can vary from person to person, but some of the most common POTS triggers based on a recent poll include illnesses (like viral infections), heat, menstrual cycles, physical activity (amount varies), certain foods (varies), poor sleep, and stress. Sometimes when we tell individuals that stress causes flare-ups, they immediately jump to assuming it is because POTS is caused by anxiety or another psychological cause, but this is not the case. Instead, stress is quite hard on our bodies, our immune system, nervous system, and can increase inflammation. Stress contributes towards many diseases, disease processes, and is a common trigger for individuals with autoimmune conditions. Click here to learn more about some proposed causes of POTS. For these reasons, it is extremely important for individuals in our community to reduce stress.

• Because of the varied flare-up triggers, and the importance of pacing, it is possible for individuals in our community to have a low symptom day, overdo it physically, and then experience a flare-up the next day where their condition may temporarily worsen; they can experience very difficult symptoms. As you can probably imagine, this is very hard for individuals in our community. Imagine that with each activity you engage in, you have to balance how much you can do, knowing that if you overdo it, stay out in the heat for too long, or eat certain triggering foods, you will feel very sick the next day or perhaps days later if there is a gradual cumulative effect.

• What is even harder is that as POTSies often navigate a great deal of grief when this happens, family and friends can become frustrated, upset, and even begin to question if they are faking their symptoms. Please know how painful this is for the POTS community and, honestly, the chronic illness community as a whole. We can assure you that the last thing anyone in our community wants to do is miss out on events, spend more time on the couch or in bed, or be unable to attend events they were looking forward to. It brings up a great deal of added grief for many. Your understanding, patience, and compassion can go quite a long way! To learn more about flare-ups, click here.

Supportive Ways To Help During A Flare-up