People living with systemic mastocytosis (SM) often experience chronic pain resulting from excessive mast cell activity in their connective tissue, internal organs, bones and joints.
The symptom burden of SM can be managed with medication and lifestyle modifications, but when symptom flare-ups occur, the effect can be debilitating. Learning to manage chronic pain will contribute to a better quality of life; it requires a muftifaceted approach in collaboration with your health care team.
What is SM?
Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
Understanding your triggers and symptoms
Before you can effectively manage your pain and related symptoms, you will first need to recognize and understand them.
Read more about SM signs and symptoms
Develop a symptom diary or journal in which you log every detail of your experience with your different symptoms, including your pain. For each symptom, track the trigger, onset, severity (on a scale of one to 10), evolution, effect on daily life and duration.
As you become aware of the patterns and know what to expect, you can better avoid the triggers. At times, they will be unavoidable, but you will know what to expect and how to manage their effect.
Managing chronic pain in SM
Common symptoms of SM include the following.
- Skin irritation, itchiness, flushing.
- Nausea, vomiting, abdominal cramps, diarrhea.
- Bone and joint pain.
- Low mood, headaches and brain fog.
Chronic pain can be felt throughout the body, from digestive discomfort to chronic headaches, skin itchiness and bone pain.
In addition to learning to avoid your triggers, you can take proactive steps to manage your pain. Your health care team will collaborate on a treatment plan that may include the following.
- Medication to alleviate symptoms, such as antihistamines and mast cell stabilizers, as well as pain relief.
- A nutritious low-histamine diet.
- A low-impact exercise program that may include swimming, walking or stretching, and relaxation options such as yoga and deep-breathing techniques.
- Getting good sleep and living a stress-free lifestyle.
If you require further support, more advanced options for managing chronic pain in other contexts exist. Cognitive behavioral therapy (CBT) is a psychological intervention that has shown clinical benefit to people living with chronic pain. Support groups of people living with chronic pain can also provide valuable first-hand experiences on how to manage daily pain.
The effect of chronic pain on well-being and mental health
Chronic pain as a result of SM symptoms can lead to lack of sleep, anxiety, depression and feelings of isolation, which in turn have a severe effect on mental health and your overall well-being. Chronic fatigue is also a consequence that can affect your immunity and ability to maintain regular daily activities and responsibilities.
