How did your fibromyalgia journey begin?

I went through a severe trauma resulting in my father committing suicide by burning down my childhood home, then was stuck being raised by my narcissistic mother who terribly abused me and furthered my trauma.

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

I was diagnosed April 2025, my diagnosis journey was absolutely horrible. The pain was unbearable, my mother was still abusing me and she ordered me to pay my hospital bills immediately so I had to try to continue working full time so I could pay my many many medical bills for all sorts of tests and multiple hospitalizations. Every day was a nightmare for me.

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

At first it was a relief to get a diagnosis but then when I found out more about fibromyalgia and how it’s lifelong and very complicated to treat, I was horrified and hoping that it was something else.

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

Daily abuse from my mother and family, and also from overworking myself and having horrible mental health issues that were never properly treated.

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

Yes, I have Fibromyalgia along with Epilepsy, CPTSD, OCD, Anorexia, the list could go on honestly.

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

I have constant pain, that I feel mostly in my back, neck, shoulders and head. I also experience severe dissociation because of the CPTSD and feel like I literally have to drag myself out of bed. Every choice I make has an impact on my body and if I don’t do everything correctly, I will fall apart. Also any stressful situation causes me to fall apart. When I’m flared up severely, I can’t eat, I can’t move, I can’t talk. I get completely debilitated and require my husband to help care for me.

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

It feels like the most intense horrible burning pain shooting throughout my body like high pressurized water shooting through a pipe. My body feels completely weak, as if I can’t lift a finger. My brain fog is so intense I can’t form simple sentences. It feels like my whole body is panicking terribly all the time. It’s so hard to keep control of my body and my emotions. Just the daily struggle.

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

It feels like I’m being completely weighed down and every step I take gets harder and harder. It feels completely impossible to force myself to do things when the fatigue is at its worst.

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

Yes, all the time. It just feels like my brain stops working. No matter how hard I try, I can’t think. I can’t talk right. My mental abilities are dissolved for the time being

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, to all of those things. Bright lights burn my eyes so badly, it feels like acid is being placed into my cornea. Loud noises trigger me into a PTSD episode. Cold tempteratures cause horrible pain in the bones and joints, making activity much harder. The heat causes me to sweat uncontrollably and can make me start having brain fog. When I’m touched it feels like I’m a ragdoll and the slightest touch can cause sudden pain. Bad smells will completely get rid of my appetite, which is a struggle for me anyway.

How has fibromyalgia affected your sleep and ability to rest?

Yes, sleep can be very challenging. Good quality sleep is the most healing thing, but it’s hard to achieve. Currently I have horrible nightmares every night because I’m processing many years of trauma.

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

A flare is when my pain and mental symptoms become absolutely unbearable, and I’m debilitated. Flares will last at least 2 days but can last up to weeks.

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

Yes, when I work hard for them. The good days are when I focus on healthy hobbies and stay around positive people in a safe atmosphere. I can feel completely happy on my good days despite what I have to go through every day.

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

Stress in the number one trigger.

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, so I’m awaiting unemployment. I stay inside most of the day and just set small goals for myself to stay busy and keep myself healthy. It’s very hard to feel well enough to go out to do social get togethers.

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

Yes, I can’t make money for myself so I’m in a lot of debt, can’t pay my bills. My husband tries to help as much as possible, but I feel helpless.

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

Ranges from nightmarish to wonderful

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

It’s been very overwhelming and stressful but worth it to find the right providers.

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

It’s extremely hard, I feel that no one will ever understand how much pain I have to carry.

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

All 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?

My friends all abandoned me, so only my husband was left to care for me

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

Yes it’s very hard to feel well enough to be intimate

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

Emotional nightmare

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

It actually helped me build a relationship with my body and led to me loving myself and learning to properly care for myself

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

Marijuana

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’s very misunderstood because it’s very different for different people and doctors assume people with fibro aren’t suffering, I had to break down crying and begging for doctors to listen to me.

What would you like more people to understand about fibromyalgia?

That people with fibromyalgia have all been through trauma and have all suffered plenty, so people with fibromyalgia should be treated with kindness and consideration.

How has your relationship with fibromyalgia changed over time?

At first I thought there was no way I could live with it, but once I found out what was causing me to stay sick, I now see fibromyalgia as a positive turn in my life because it helped me love myself and see the dark truths in my life. It helped me become my true self again. So it’s worth it.

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

Fibromyalgia is a result of CPTSD. Years of ongoing trauma damages the brain and causes all of that internal pain to become physical. I learned that my family was treating me with abuse and that I was never going to get better until I cut off contact with them. As hard as that was, it was the only way for me to truly live my life after everything I have been through. I deserve it.

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

I am excited and optimistic about my future

Is there anything else you’d like to share?

Fibromyalgia helps you realize how strong you truly are.