How do I know if I’m having ET symptoms or menopause symptoms, i.e. night sweats, foggy brain etc.?
There is no one answer for this – and many of the symptoms of essential thrombocythemia may be confused with “normal” symptoms of menopause. However, there are some tell-tale signs that ET is the root cause. For example, night sweats are different than hot flashes. Night sweats typically occur while sleeping and characteristically cause soaking sweats – like you have to change your pajamas or the bedding. Night sweats are not subtle. In contrast, most women describe hot flashes as a flush that comes on at any time of the day (or night) and while uncomfortable, doesn’t typically cause profuse sweating. If you are having migraine headaches, visual auras, painful rash of the extremities — called “erythromelalgia,” these are more common with ET and warrant a discussion with your physician.
Sex is difficult since my diagnosis. My husband is cautious and doesn’t want to impose himself on me, and I cannot get my head into it. I’m consumed with thoughts of the disease and possible progression. Can you offer an insights?
Many individuals, when faced with a life changing diagnosis, find that anxiety and depression about the diagnosis can affect the normal activities of life, whether or not it’s sexual activities or libido, work, sleep or other relationships. It is very, very common for people to experience grief reactions or event depression with diagnosis. Depression and anxiety are very treatable conditions.
In your situation, I would strongly recommend seeking out a psychotherapist or psychiatrist and discussing that your worries about your disease are impeding your normal function. You might also have your husband join you at some of these sessions. Finally, don’t forget to mention this to your hematologist as well, who might be able to give some advice with regard to a medical approach. The most stressful things in life: death, divorce, illness often cause humans to experience grief, which can also take the form of anxiety or depression. There is excellent treatment for this in the form of therapy and medication. Please talk to a professional.
I know intimacy is many things unrelated to sex but sometimes the fatigue overtakes me and I simply don’t care if I ever have sex. I also fall asleep when we try to be close.
Fatigue is a very common symptom of the MPNs, including the “lower-risk” MPNs including polycythemia vera and essential thrombocythemia. This can impede normal sexual activity and libido. One option is to try creative, non-medical, interventions. Think about what times of the day you are at your best. Perhaps timing your intimate encounters to be at a time of day when you feel more energized? Experiment with alterations in your diet – are there some foods that make you sleepy? If so, you can avoid those when you want to remain energized. Certainly, avoiding alcohol might help to prevent fatigue on “date nights.” A lack of libido can also be a sign of depression and certain antidepressants can help with this. I recommend discussing this all with your physician.