Sleep is critical for managing systemic mastocytosis (SM) and any other rare disease. As a patient living with indolent SM, I know the importance of sleep. The problem is I have insomnia. I average about four hours a night, and the older I get the harder it is for me to function on a daily basis.
Exhausted days, sleepless nights
I am so tired, but I lay down and my brain starts thinking about what I did not get done that day, and what I need to do tomorrow to catch up. Then worry kicks in, followed by anxiety. It is horrible.
Despite how tired I am during the day, if I take a nap, I feel worse for hours. I will go days working with about four hours of sleep, then all at once my body will give out with chronic fatigue. Then I will lay down exhausted and sleep for about 10 hours.
I feel for anyone going through this while working a 9-5 job: I would not be able to function like this if I had to get up daily and go into work.
Blame histamine
Based on what I have read this is a common symptom of SM. It’s due to histamine levels being elevated at night. Mast cells in the brain can promote wakefulness and often trigger nocturnal histamine dumps that lead to itching and restlessness.
Proper sleep can help reduce symptom flares, and poor sleep can worsen mastocytosis symptoms. My main one is brain fog. It is worse on days when I did not sleep well.
Proper sleep supports the immune system and lowers stress. Without it, I am always anxious, worried and at a higher risk for the flu, COVID and viruses that are always going around.
Nothing helps
I have tried all the recommendations: not drinking caffeine in the afternoon, the right bedroom environment, a set sleep schedule, soothing sounds and melatonin. I take an antihistamine before bedtime. The doctor finally prescribed me a sleep medication. But I am still either laying there wide awake, or I go straight to sleep and then I am up at 3 in the morning.
It seems that there is a 3 a.m. cortisol spike that could be causing the early mornings. This is a common disruption of the natural circadian rhythm. Cortisol kicks in early, causing abrupt, anxious awakenings. This could can be caused by chronic stress, PTSD and blood sugar crashes. And I, of course, deal with all these health problems.
With all the research I have done on the subject this must be a common occurrence for SM patients. I have been dealing with this for the last five years. The only recommendation I have found that I have not tried is magnesium. I do remember that my last lab results showed my magnesium was low. So, this will be my final effort it seems. I ordered some magnesium oral supplements, a spray for the bottom of your feet that is supposed to help you relax, and a magnesium Epsom salt for the bath.
Living with a rare disease, I am sure you all will agree, is so frustrating. Your body just does what it wants, when it wants. All of this leads to the result that making plans is hard. You never know if you are going to have a good day or a bad one. On bad days all we can do is do the best we can and hope for a better tomorrow.
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