Narcolepsy and Comorbidities
It has been said that people with narcolepsy often have comorbidities, which means someone has the presence of one or more additional chronic conditions. I have both fibromyalgia and migraines in addition to narcolepsy.
My history of narcolepsy and comorbidities
For me, I was first diagnosed with migraines at around the age of 14. Then I was diagnosed with fibromyalgia at the age of 19. Finally, I was diagnosed with narcolepsy at the age of 22.
I have had narcolepsy since I was younger but never got diagnosed. Some people with narcolepsy get diagnosed with narcolepsy and then other comorbidities.
The symptom puzzle
I have found living with narcolepsy alone to be pretty difficult some days. Having multiple conditions can be really tough most days. At least one condition gets in the way of things every single day. Some days I have a hard time differentiating the 3 conditions from each other.
Which doctor do I see?
For example, if I don’t sleep well one night, is it from my pain caused by fibromyalgia, or is it just that my narcolepsy medications didn’t work as well that night? This makes it hard to know which doctor to talk to about it because it could easily be either 1 of the 2 conditions.
Symptoms are more intense
Both narcolepsy and fibromyalgia can cause brain fog, so my brain fog seems to be pretty intense most days because I have both of these.
Cause or effect?
It is also hard to tell the difference between my migraines and both narcolepsy and fibromyalgia because sometimes, if I don’t sleep well one night, I get a migraine the next day. Sometimes when I experience migraines, it is because of the muscle and nerve pain in my neck from my fibromyalgia.
Medication interactions and other challenges
Another thing about having these 3 conditions is that a lot of medications for each of these conditions interact with each other, and it makes my medication selection pretty limited. I remember being on certain medications for my fibromyalgia before my narcolepsy diagnosis that I had to stop when I started medications to manage my narcolepsy.
Having multiple conditions also makes it hard to know if I experience a new symptom, is it from one of my health conditions, or is it something new?
Having multiple conditions means I am sleepy, in pain, and have frequent migraines every day. This makes it hard to do a lot of things I like to do, such as working a full-time job in person, exercising, hanging out with friends, etc.
Another thing that is difficult to do because of my multiple conditions is maintaining relationships. Whether it is family, friends, or dating. I have to explain to a lot of people why I can’t do something or why I have to change plans, and most of the time, these people just don’t get it.
I have lost so many relationships with people because of this. The relationships I have been able to maintain are with people who do get it, have a chronic condition themselves, or are willing to learn about my conditions.
Do you have any comorbidities? How do you manage each of your chronic conditions?
Do you feel that your doctor understands narcolepsy?