How ice baths help my indolent systemic mastocytosis symptoms

Photo shows a portable plastic bath tub in a garden ready for an ice bath/Getty Images
Portable plastic bath tub in a garden ready for an ice bath/Getty Images
I have lived with extreme pain for the last 24 years because of indolent systemic mastocytosis (ISM), but ice baths help me find relief.
To keep the pain from my ISM at bay, I start every morning with deep breathing exercises followed by a cold shower, and sometimes, I'll add in an invigorating ice bath.

I have lived with extreme pain for the last 24 years because of indolent systemic mastocytosis (ISM). The pain in my arms and legs has always been the symptom I have experienced most.

I have never taken any medication other than Tylenol for the pain. I was so young when I was diagnosed in 2000, and after years of living undiagnosed, I did not want to risk  becoming addicted to any more potent pain medication. This has caused me to have a high tolerance for pain. 

Holistic methods that work for me

Over the years, I have used many different methods for coping with the pain, always searching for new ways to combat the symptoms. I always start my morning off in prayer, thanking God for giving me the strength to cope daily with this disease. I meditate, and on good days, I practice gentle yoga. I also use deep breathing exercises and cold therapy.

Learn more about SM signs and symptoms

In 2019, I came across the Wim Hof method, which includes a combination of breathing exercises and cold therapy. Before attempting this or any other new method to combat symptoms, always check with your doctor first. 

That first cold shower was tough, and it took  months before I even thought about attempting an ice bath. Surprisingly, the ice bath was awesome. I felt that if I could do this, I could do anything.

Today, I do my deep breathing exercises followed by  a cold shower in the mornings. Once or twice a month, I take an ice bath. I submerge myself in the water and stay under for about four minutes. It is invigorating. 

In the wintertime, I use my pool for cold therapy. This all mentally prepares me to cope with the pain, anxiety and depression I face daily. ISM takes a toll not only on your body but your mental health as well. 

Of course, there have been days that the pain has gotten so severe that the only way I can cope is to take the hottest bath I can stand. The hot water alleviates the pain quickly. I must take Benadryl, an antihistamine, before getting into the tub because I have a heat intolerance. Heat causes extreme itching, since I also have cutaneous mastocytosis. It often feels like trading one symptom for another! 

Finding relief through pharmaceutical intervention

I try my best to keep a positive attitude, and for years,I pray every morning for help with this disease. In 2020, I was given a number to call about a clinical drug trial, and in January of 2021, my prayers were answered. 

I entered Blueprint Medicine’s Pioneer clinical trial, and since beginning  treatment with Avapritnib, my symptoms have become tolerable. My quality of life has gotten better. I do still have allergic reactions and always carry my EpiPen with me everywhere I go. I also still practice deep breathing and cold therapy.

I still have bad days, but even on the worst days, I always try to find joy in my life. If you are also living with this disease, hope you do too.