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Castleman disease: tips for improving your daily life with the disease!

Published May 7, 2022 • By Léo Benita

Castleman disease is characterized by inflammation of the lymph nodes and lymphatic tissue and the appearance of benign tumors. It is said to be lymphoproliferative, i.e. there is a proliferation of so-called lymphoid cells, which causes an immune system disorder. 

While some forms of the disease are benign, others can be more severe and require aggressive treatment.

How to live well with Castleman disease? How can you manage your daily life with Castleman disease and cope with your symptoms better?

We explain it all in our article!

Castleman disease: tips for improving your daily life with the disease!

Eat well to prevent weight loss!

Castleman disease can cause abdominal pain, nausea and vomiting, and even loss of appetite, which can lead to weight loss. It is important to maintain a sufficient and healthy diet to provide the body with all the resources it needs to prevent cachexia (extreme weight loss with loss of muscle mass).

To be able to continue eating despite the recurring nausea, it is recommended to eat dry foods (biscuits, toast, cereal, breadsticks, pretzels, etc.) which provide energy and nutrients and at the same time reduce nausea

It is recommended to eat them first thing in the morning, and then regularly throughout the day, since nausea is more severe when the stomach is empty. In addition, eating small amounts of food several times causes less nausea than a single very rich meal.

Cold or lukewarm foods and dishes tend to be better tolerated than hot and spicy ones. It is also advisable to avoid foods that are fried, too sweet or too fatty, as well as foods with a strong odor, as they provoke more nausea.

In order to maintain adequate intake of nutrients despite nausea, it is recommended to include in your daily diet such foods as bananas, avocados, mashed potatoes, rice, pasta and hard-boiled eggs. Finally, it is advisable not to lie down immediately after a meal, as this can also lead to nausea.

It is also important to stay hydrated, which can be particularly difficult when vomiting occurs. It is recommended that you drink small amounts of water throughout the day. Iced teas can be a good addition, but avoid drinks with too much sugar or milk, as both can make nausea worse.

Vegetable or chicken broths are recommended as they provide good hydration and contain a lot of nutrients and electrolytes.  

Sleep well to reduce fatigue!

Castleman disease can cause a lot of fatigue. In order to reduce it, it is important to get a good, restful sleep. This allows for a more fulfilling day, and provides the body with the rest it needs to fight the disease. Here are some tips your can use to improve sleep quality.

Regularity is the first essential point. Sleeping at fixed times makes it easier to fall asleep and improves sleep. To adopt a regular rhythm, start by choosing a wake-up time, and stick to it as much as possible. Your bedtime will then gradually adjust according to your need for sleep. 

Another important factor is exposure to light. Light strongly disturbs sleep and sleep onset. Avoid exposure to bright, clear light sources in the evening, preferring a dark atmosphere with warm lights, which will help you fall asleep. The use of screens is not recommended. If you must use them, choose a dark display and low brightness.

If you wake up in the middle of the night, it is important not to look at the clock, as it makes you preoccupied with the number of hours you have left to sleep, which makes it difficult for you to fall back asleep.

Finally, although certain substances such as alcohol can make it easier to fall asleep, it is important to know that they greatly deteriorate the quality of sleep. You wake up more tired, even if you have slept longer. 

Stay positive!

Having Castleman disease, and particularly its severe forms, can have a heavy impact on your morale. The resulting sense of hopelessness and isolation can become a real burden.

It is important to know that there are sources of support that can give hope and help make sense of the ordeal.

While friends and family can be an important source of comfort, they are not the only solution. Carenity provides access to testimonials from Castleman disease patients, who share their advice and experiences with the disease. These testimonials can be a real source of inspiration, allowing you to regain confidence in your fight against the disease. Carenity also allows you to talk directly with patients who are like you, so that you feel less alone in the face of the illness.

Keeping a positive attitude also means keeping up with social activities that suit you, whether it's having a drink with friends or joining a local club. Conversations and activities with other people add to your sense of fulfillment and are an important source of satisfaction!   

Conclusion

Castleman disease can be very difficult to manage, both physically and mentally. Maintaining a sufficient and healthy diet, as well as having a regular and restful sleep provides your body with the resources it needs to fight the disease. Keeping your spirits up during these difficult times is a real challenge, but there are a number of resources and tips that can help you stay positive and find the strength to continue the fight.



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avatar Léo Benita

Author: Léo Benita, Pharmacy student

Léo is currently finishing his Doctorate in Pharmacy, as well as his Master’s degree in neurosciences at the university of Toulouse. His scientific background allows him to be involved in the elaboration of Carenity... >> Learn more

Who reviewed it: Alizé Vives, Pharmacist, Data Scientist

Alizé holds a PharmD and a master's degree in strategy and international business from ESSEC Business School in France. She has several years of experience working with patients and members, conducting surveys for... >> Learn more

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