What my myelofibrosis symptoms actually feel like
Before my diagnosis, I didn't understand having symptoms that never go away
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Until my myelofibrosis diagnosis, I didn’t really understand invisible illness.
I understood pain that comes and goes, the kind most people experience. You pull a muscle, bang your head walking into a door, or hurt your back in the gym, and your body reacts, then eventually settles down again. I wasn’t prepared for symptoms that never fully leave.
Constant and unpredictable
For me, myelofibrosis feels physical all of the time. Even on better days, something usually reminds me that my body no longer functions normally.
My legs ache constantly. It’s a dull pain more than a sharp one. Some days, my muscles burn for no obvious reason. Other days, I lie in bed, and it feels like my body is vibrating internally. It is difficult to explain properly because there is rarely one big, obvious symptom. It’s more like a collection of physical sensations that slowly wear me down throughout the day.
Fatigue has probably been the hardest symptom for me to explain to others. Before this, I thought fatigue just meant being tired. What I experience now feels completely different. Sometimes I wake up feeling like I have been poisoned. Other days, it feels like I was drinking alcohol all night; I wake up dizzy, dehydrated, and “hungover” despite not touching a drink.
That shocked me in the beginning because, before my diagnosis, I trusted my body completely. I could work long hours, train hard, travel constantly, and still function normally the next day. I never really thought about physical energy because I always had it.
Now, I wake up and assess how my body feels before I even get out of bed. Some mornings, I know I can probably have a decent day. Other mornings, I know I’ll struggle physically before the day has even started. That unpredictability is one of the hardest parts of living with symptoms every day.
People often see only the moments where I appear functional. They see me working, replying to messages, going out for dinner, or posting online, and naturally assume I must be doing OK.
What they don’t see is what happens underneath all of that: the calculations I’m constantly making. How much energy do I actually have today? If I push through this now, what will it cost me tomorrow? Is this manageable discomfort, or is my body warning me to slow down? Those calculations never really stop.
In the beginning, I kept trying to operate like the person I was before my diagnosis, because mentally, I still felt the same. I thought if I pushed hard enough, my body would keep up.
Over time, though, I realized my body was forcing me to live differently, whether I accepted it or not. Rest stopped being optional. Recovery stopped being quick. Symptoms stopped being temporary interruptions and instead became part of the structure of everyday life.
I still miss the simplicity of feeling physically normal without constantly thinking about how my body feels. I miss trusting my own energy levels. I miss waking up without immediately trying to work out what kind of physical day I’m about to have.
But I have also become more understanding of my body over time. Some days are good. Some days are difficult. Most days sit somewhere in the middle.
That is the most honest way I can describe what it’s like to live with myelofibrosis symptoms every day.
Note: Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.
