The Hidden Challenge: Extra Manifestation Symptoms in Chronic Illnesses

If you have read any post on this blog, then you have read this statement over and over again, but I am going to say it one more time. Living with chronic illness can be a challenging journey, as it often involves managing various symptoms. One common concern for individuals with chronic illnesses is the development of what is called extra manifestation symptoms (EMSs). What joy.

EMSs are a range of symptoms, from physical to emotional, that occur in a person, that aren’t typical symptoms of the illness(es), but occur because of the chronic illness(es). These symptoms are beyond the commonly known symptoms associated with a certain condition, they are additional (as if we need any more), and can further complicate a person’s health journey. In this blog post, I wanted to shed a bit more light on this topic, explore some possible reasons why they might occur, provide some common examples, and discuss potential strategies to manage them.

While chronic illnesses have their characteristic set of symptoms, extra manifestations refer to additional symptoms that arise alongside or separate from the primary symptoms of the condition. These extra symptoms can vary widely and stem from various factors, including the underlying disease process, the impact of medications, or comorbidities associated with the chronic illness.

It might be more helpful to provide some examples to get a clear picture of what I am talking about. Take for instance Irritable Bowel Disease, such as Crohn’s or Ulcerative Colitis. With that diagnosis, you would expect symptoms associated with the GI tract; however, individuals who have IBD may also experience symptoms outside of the GI tract such as joint pain and swelling, eye issues, skin issues, lower than average bone density, kidney issues, liver issues, and anemia. For me, not only do I have certain GI symptoms, but I also experience skin issues such as weird random skin rashes for no reason whatsoever and bad acne that requires additional medication to manage. Other extra manifestations may be mental health symptoms such as depression, anxiety, cognitive difficulties, and trauma and many chronic illnesses are associated with persistent fatigue and sleep disturbances, including insomnia or excessive daytime sleepiness. These extra symptoms can intensify feelings of exhaustion and contribute to a reduced ability to engage in daily activities. In addition, many diagnoses not associated with the GI tract may cause digestive problems like nausea, vomiting, abdominal pain, or bowel irregularities. Like, why, just why? Isn’t it bad enough that we already have the symptoms of whatever chronic illness but we also have to have extra symptoms? Not cool.

It’s not entirely clear why these extra manifestations…well….manifest, but there could be a few reasons. One reason is that it could be because of disease progression. As chronic illnesses progress, they can affect different systems or organs in the body, giving rise to new symptoms. For example, in autoimmune diseases like rheumatoid arthritis, joint pain and inflammation may be accompanied by skin rashes or eye inflammation because the progression of the disease and inflammation begins to affect not only the joints but also other organs like skin and eyes. Another reason might be medication side effects because the medications used to manage chronic illnesses can sometimes lead to additional symptoms. For instance, certain chemotherapy drugs may cause hair loss or nausea, while corticosteroids can result in weight gain (moon face anyone?) or mood changes. A third reason might be comorbidities. Chronic illnesses often coexist with other health conditions, known as comorbidities. These comorbidities can introduce their own set of symptoms, further complicating the overall health picture. For example, someone with diabetes and hypertension may also experience fatigue, dizziness, or kidney problems.

Unfortunately, there is no cure for any of this so much of what we can do is manage any symptoms that come our way, even the extra ones. One way to help manage these extra manifestations is through open communication with your healthcare providers. It is crucial to discuss any additional symptoms or changes in symptoms with healthcare professionals. They can help identify any underlying causes, or even if they can’t, they can explore suitable management options. A second way to cope is to develop a comprehensive treatment approach. Developing a holistic treatment plan that addresses both the primary symptoms and the extra manifestations is, I believe, essential. This may involve medication adjustments, lifestyle modifications, therapy, or alternative and complementary therapies, depending on individual needs. Also, make sure you are getting support and engaging in self-care. Practicing self-care, adopting stress-reduction techniques, and seeking emotional support through counseling or support groups can contribute to overall well-being and help individuals navigate the challenges posed by extra manifestations. Lastly, make sure you are educated about disease management. Understanding the chronic illness and its potential extra manifestations can empower individuals to better manage their health. Educating oneself about the condition, treatment options, and available resources can lead to improved self-advocacy and informed decision-making.

Dealing with extra manifestations of symptoms of chronic illnesses can add complexity to an already challenging health journey. Seeking support from healthcare professionals, fostering self-care practices, and staying informed are crucial steps in navigating the diverse array of symptoms that may arise. By recognizing potential reasons behind these additional symptoms and implementing appropriate management strategies, individuals can work towards mitigating their impact and improving their overall well-being.