If you have systemic mastocytosis, you probably have a personalized treatment plan. You know how important it is to take medications as prescribed.
But managing this condition takes more than medication. Living with mastocytosis means being on alert for potential triggers and taking steps to avoid them.
Although triggers vary from person to person, some basic healthy habits may help as you navigate life with systemic mastocytosis.
Stress is the most common trigger of mastocytosis. Of course, stress is part of life, and it’s impossible to completely eliminate it. But there are ways to minimize the effects of stress:
- Identify modifiable stressors: Can you avoid certain stressors? If not, can you handle them in such a way that they’re less stressful? Try keeping a stress journal to help highlight stressful situations that you might be able to avoid or change.
- Pace yourself: If you don’t have the energy, it’s OK to say no rather than add to your to-do list. Set limits and be open to changing your plans when necessary.
- Prioritize hobbies: Whether it’s art, music, books, or playing with your pets, incorporate favorite pastimes into your routine. Even a daily walk around the block may help clear your mind and put things in perspective.
- Nurture mind and body: There are many meditation, mindful breathing, and deep breathing exercises you can try. You might also find mind-body practices such as yoga or tai chi are a good fit.
- Be prepared: Having a medic alert I.D. and an emergency response plan can give you peace of mind.
- pre-made and processed foods
- packaged, processed, and pre-frozen meats (fresh is best)
- spicy foods
- cheese and other fermented foods and beverages
- certain fruits
- leftovers or food that may have spoiled
In some cases, a low histamine diet can leave you deficient in certain nutrients. And some supplements can interact with foods, medications, or other supplements. It’s a good idea to go over your diet with a doctor or dietitian to make sure it’s safe.
Two triggers that often go together are exercise and temperature changes.
Since exercise affects body temperature, you may want to avoid strenuous exercise outside when it’s very cold, hot, or humid. You’ll also want to avoid jumping into cold water for a swim.
When exercising inside, use fans and keep a spray bottle handy in case you start to overheat. When possible, dress in layers, so it’s easy to adjust to big swings in weather.
Other non-food triggers to consider avoiding are:
- medications such as nonsteroidal anti-inflammatories (NSAIDs) and opioids
- insect bites, such as bees, wasps, sawflies, and ants
- heavily scented products such as air fresheners, cleaning products, perfumes, and cologne
In a small study of people with mastocytosis, about
- Set a sleep schedule: Aim for the same bedtime and wake time every day.
- Create a good sleep environment: Ensure the bedroom is quiet and dark. Remove electronic devices that emit light. Think about room darkening shades and closing the door if necessary.
- Exercise: Get some physical activity every day.
- Wind down: Don’t be too active just before bed. Use the hour before bedtime to do relaxing activities, such as reading, meditating, or taking a soothing bath. Avoid large meals, alcohol, and caffeine.
If you often have trouble sleeping or still feel sleepy during the day, it’s worth discussing with your doctor.
If you tend to have skin symptoms, such as rash, hives, or itching, give your skin a little extra care by:
- keeping skin well moisturized
- protecting your skin from too much sun exposure
- avoiding environmental and chemical skin irritants
- avoiding rough clothing that rubs against the skin or otherwise causes irritation
- seeking prompt treatment for any sign of skin infection
Speak with your doctor about which daily moisturizers are safest.
Living with a chronic condition can be challenging. In addition to physical symptoms, mastocytosis is
- mood shifts
If you’re experiencing any of these symptoms or are having trouble coping, you’re not alone. And these symptoms are treatable. Speak with your doctor and, if needed, ask for a referral to a therapist or other mental health professional.
Systemic mastocytosis is rare, so you may not find a dedicated support group in your area. But you can seek support and information from The Mast Cell Disease Society’s online community.
There’s no cure for systemic mastocytosis. But treatment can reduce the effects of the disease and control symptoms. Avoiding triggers is key to living well with mastocytosis.
The outlook depends on which type you have and how severe your symptoms get. Life expectancy for indolent systemic mastocytosis, for example, is comparable to the general population. There’s a 3% to 5% risk of progression to a more advanced form. People with systemic smoldering mastocytosis are more likely to progress to advanced disease.
Advanced systemic mastocytosis is more aggressive. Some research suggests that advanced disease has a median survival rate of 2 months to 41 months, depending on the specifics of the condition.
Your healthcare team can give you a better idea of what to expect based on your circumstances.
Systemic mastocytosis is a lifelong condition that can present many challenges. In addition to following your treatment plan, following these six healthy habits can help you avoid potential triggers and better manage life with systemic mastocytosis.