How did your fibromyalgia journey begin?
After acquiring mononucleosis.
When were you diagnosed, and what was your journey to getting a diagnosis like?
At age 21.
What did it feel like to finally have a name for what you had been experiencing?
Relief that I wasn’t crazy and that I *was* actually ill despite what many people-even some doctors-thought along with worry for my and my children’s futures.
Do you have any idea what may have contributed to or triggered the onset of your fibromyalgia?
Childhood trauma and/or the mononucleosis.
Do you experience fibromyalgia alongside any other health conditions? If so, how do these experiences affect one another?
Yes, too many to list here. They make each other worse in a vicious cycle.
How does fibromyalgia show up in your body and daily life? What symptoms do you experience?
Constant pain and both muscle and mental tension, constant anxiety about health issues, frequent muscular spasms, digestive disturbances, headaches, extreme exhaustion no matter how much sleep I get…
How would you describe the pain and physical sensations you experience with fibromyalgia?
Electric tingles, spasms, burning sensations like hot rods poking my extremities.
How would you describe the fatigue you experience with fibromyalgia, and what impact does it have on your life?
Extreme and complete. Instead of having any energy each day, I wake up already in debt.
Do you experience brain fog or difficulties with memory, concentration, or finding words? If so, what is that like?
Constantly. It feels like going from being a fairly intelligent person with a good education and high IQ to being two- or three-years old again in knowledge, common seanse, and emotional understanding, capacity, and capabilities.
Do you experience any sensitivities, such as to temperature, touch, light, noise, smell, or other things? If so, what is that like for you?
Yes-all the above. Excruciatingly difficult. I’m too «extra» or «dramatic» according to most of the rest of the world.
How has fibromyalgia affected your sleep and ability to rest?
It’s difficult to fall asleep and to stay asleep, and I frequently wake up due to pain and must change positions. Thus the cycle begins anew
What is a fibromyalgia flare like for you, and how is it different from your usual experience?
Pain, spasms, brain fog, etc., are increased exponentially. Everything goes from worse to worse to «kill me now, please.»
Do you have “good days,” and if so, what do they look like?
Not anymore.
Have you noticed anything that seems to trigger or worsen your fibromyalgia symptoms?
Spicy odors, little sleep, skipping meals, lack of protein, stress, overdoing any activity whether I wanted to do it or not.
How has fibromyalgia affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
I can’t work, I rarely schedule any activities or appointments, and I still have to cancel over half the plans I make.
Has fibromyalgia had an impact on your finances or access to care?
Yes.
What has your experience been like with doctors, specialists, and the healthcare system?
Decent when I lived in the U.S. Terrible since I moved to Norway over six years ago.
What has your experience been with treatments, medications, therapies, lifestyle changes, or other approaches to managing fibromyalgia?
Because I also have RA, very little focus has been on treating my Fibromyalgia.
What has it been like to live with a condition that others can’t see or may not fully understand?
Lonely. Miserable. Painful.
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
Most of the time.
How has fibromyalgia affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
Some people some of the time. Not everyone always remembers…
Has fibromyalgia had an impact on intimacy or your sexual life?
No.
What has the emotional or mental side of living with fibromyalgia been like for you?
Mental health has declined considerably.
How has fibromyalgia affected your relationship with your body, identity, or sense of self over time?
I lost who I was and the things, activities, and personality that defined me. Now I’m just a lost, lonely nobody.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
No.
Have you connected with others who have fibromyalgia, either online or in person? What has that experience been like?
No.
How do you feel fibromyalgia is understood by the medical community, society, and the media? What do you think needs to change?
It isn’t understood at all. It is under-represented in care.
What would you like more people to understand about fibromyalgia?
How all-encompassing it can be.
How has your relationship with fibromyalgia changed over time?
It’s just gotten worse.
Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with fibromyalgia?
No.
When you think about the future, what fears, concerns, or hopes do you have?
That I will live like this for a long time more and that I will die in this much pain and agony.
Is there anything else you’d like to share?
No, thank you.