When were you diagnosed, and what was your journey to getting a diagnosis like?

I was diagnosed in 2012, I had to see every doctor u could think of. Until I finally saw a rheumatologist

What did it feel like to finally have a name for what you had been experiencing?

Scary

Do you have any idea what may have contributed to or triggered the onset of your fibromyalgia?

I literally have no clue what could have started it

Do you experience fibromyalgia alongside any other health conditions? If so, how do these experiences affect one another?

Honestly everytime I go to the doctor for something im getting a new diagnoses. Having fibromyalgia has made my life hell

How does fibromyalgia show up in your body and daily life? What symptoms do you experience?

So for a while it seemed to be gone honestly I was working doing good and then the last 4 years different things have been happen, like my neck and and shoulders right now I cant work because I cant drive or sit up longer than a couple hrs. It has caused me stomach issues, I get constant headaches. Ive gotten to the point where its hard to do anything

How would you describe the pain and physical sensations you experience with fibromyalgia?

Its horrible. When i started having neck pain i couldn’t even lay down or touch the back of my neck to sleep because it hurt so bad.

How would you describe the fatigue you experience with fibromyalgia, and what impact does it have on your life?

I literally barely sleep which is why my dr says im probably having more flare ups than usual. Even if I do sleep I need lots of naps im always exhausted

Do you experience brain fog or difficulties with memory, concentration, or finding words? If so, what is that like?

I have a hard time staying focused and I also have issues with my memory at times. Its frustrating

Do you experience any sensitivities, such as to temperature, touch, light, noise, smell, or other things? If so, what is that like for you?

I cant be in heat it literally causes my pulse to go really high, light really bothers me at times. Its hard to do anything outside of my house because of it being so hot im afraid im going to pass out. I always have to have ice packs around just incase I also bring a portable fan .

How has fibromyalgia affected your sleep and ability to rest?

I get maybe 3 or 4 hrs a night. So I dont rest much

What is a fibromyalgia flare like for you, and how is it different from your usual experience?

So when I have a fibro flare sometimes they last months

Do you have “good days,” and if so, what do they look like?

Good days what are those. I guess good days are when I can take a shower and not have to take a nap after

Have you noticed anything that seems to trigger or worsen your fibromyalgia symptoms?

Stress is a big factor, foods that I eat

How has fibromyalgia affected your daily life, including your education, work, routines, plans, or the activities you are able to do?

Im not able to work full time, I can barely do things around the house. Right now I cant drive. I try making plans and either have to cancel or suffer during it.

Has fibromyalgia had an impact on your finances or access to care?

Yes it has because I cant work full time anymore I barely have money coming in. Im trying to get disability now because it just seems like its getting worse honestly. I have really good doctors

What has your experience been like with doctors, specialists, and the healthcare system?

When I first started this lovely journey it sucked Dr’s didnt really believe anything I said. The last couple doctors I have had have been wonderful. It is hard sometimes to gets certain meds approved so that has sucked

What has your experience been with treatments, medications, therapies, lifestyle changes, or other approaches to managing fibromyalgia?

I feel like a guinea pig I’ve been on so many different meds and I have a hard time because I always have the worst side effects. For a while I just figured dr was wrong so I didnt make any changes but now all I do is research fibromyalgia trying to find a way to get my life back

What has it been like to live with a condition that others can’t see or may not fully understand?

Alot of people in my life dont understand think im being lazy or being dramatic so it has been hard.

Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?

Yes when I first started seeing dr.s about it

How has fibromyalgia affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?

That is one thing I can say for sure is my husband goes to all my appointments with me and tries to help keep my stress level down as much as he can. He is great

Has fibromyalgia had an impact on intimacy or your sexual life?

Yes i dont have one which sucks for my husband

What has the emotional or mental side of living with fibromyalgia been like for you?

Some days I wonder why am I still here. Its so stressful and emotionally draining

How has fibromyalgia affected your relationship with your body, identity, or sense of self over time?

All the time

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

Honestly im still trying to figure this out but im learning that I need to change the things I put in my body and the activity I do try not to do everything at once

Have you connected with others who have fibromyalgia, either online or in person? What has that experience been like?

I have a friend that is going thru same thing so we share what works for us and just having someone that understands makes a difference

How do you feel fibromyalgia is understood by the medical community, society, and the media? What do you think needs to change?

I think we needs to find better ways to treat it and stop trying to throw every other med at it

What would you like more people to understand about fibromyalgia?

That we aren’t lazy or being antisocial we are suffering yet trying to have a normal life as best as we can.

How has your relationship with fibromyalgia changed over time?

Im just basically trying to understand it a bit more now when before I dismissed it

Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with fibromyalgia?

I guess learning more about my body

When you think about the future, what fears, concerns, or hopes do you have?

I hope that they can find a way to help us get our lives back before all the flare ups and stuff