How did your fibromyalgia journey begin?
It began in 2011 when I was rushed to the hospital thinking it was a heart attack.
When were you diagnosed, and what was your journey to getting a diagnosis like?
2011..it was frustrating, going to doctor who kept saying that I had bursitis,or tennis elbow issues, kept getting hydrocortisone shots and still the pain was getting worse.
What did it feel like to finally have a name for what you had been experiencing?
Confused..
Do you have any idea what may have contributed to or triggered the onset of your fibromyalgia?
No idea
Do you experience fibromyalgia alongside any other health conditions? If so, how do these experiences affect one another?
Since getting diagnosed, started getting other health issues, lots of inflammation,which I believe is the whole issue with fibromyalgia
How does fibromyalgia show up in your body and daily life? What symptoms do you experience?
Body aches, especially in the back.. spasms and exhaustion
How would you describe the pain and physical sensations you experience with fibromyalgia?
Like having contractions.
How would you describe the fatigue you experience with fibromyalgia, and what impact does it have on your life?
You feel like you’re running on empty
Do you experience brain fog or difficulties with memory, concentration, or finding words? If so, what is that like?
Definitely
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
How has fibromyalgia affected your sleep and ability to rest?
Yes it has
What is a fibromyalgia flare like for you, and how is it different from your usual experience?
It’s like having the flu..I can treat other health issues but fibromyalgia is hard to treat
Do you have “good days,” and if so, what do they look like?
I used to have good days,but the older I’m getting the more the flare up
Have you noticed anything that seems to trigger or worsen your fibromyalgia symptoms?
Stress
How has fibromyalgia affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
Yes
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?
Frustrating
What has your experience been with treatments, medications, therapies, lifestyle changes, or other approaches to managing fibromyalgia?
Rollercoaster ride you can’t get off
What has it been like to live with a condition that others can’t see or may not fully understand?
Exhausting
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
Yes
How has fibromyalgia affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
No..I’m done trying to explain my illness
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?
Exhausting
How has fibromyalgia affected your relationship with your body, identity, or sense of self over time?
I don’t recognize my self anymore
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Listening to my body,rest when I’m tired and learn to say no.
Have you connected with others who have fibromyalgia, either online or in person? What has that experience been like?
Same as mine
How do you feel fibromyalgia is understood by the medical community, society, and the media? What do you think needs to change?
Some doctors don’t go into the field of medicine to help patients,they do it for their paychecks..the oath do no harm, goes out the door.. compassion and empathy should be their motto..stop judging and putting titles of drug seeking on patients
What would you like more people to understand about fibromyalgia?
It’s painful and we need more empathy than doubt
How has your relationship with fibromyalgia changed over time?
It’s like being forced into a relationship you don’t want but can’t seem to escape from.
Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with fibromyalgia?
It has taught me not to take my health for granted.. Advocate more for your well-being