How did your fibromyalgia journey begin?

I was in my mid 30’s and experiencing chronic pain that couldn’t be explained. After months and months of doing every test under the sun, they finally concluded it was fibromyalgia.

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

Frustrating, expensive, dismissive and time consuming.

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

It was a relief at first until I quickly realized that most doctors instantly dismiss you as soon as you say the word “fibromyalgia “.

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

I strongly suspect it was the result of years of complex trauma that damaged my nervous system.

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

Yes. I also have gastroparesis, severe chronic GERD, MS, degenerative joint disease and am a breast cancer survivor.

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

Severe chronic pain that is not easily managed.

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

Like my joints have concrete hardening in them while simultaneously having electrical shocks shoot through my body randomly. My skin always feels sunburned. Certain clothing hurts. I cant ever get comfortable enough to relax.

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

Even when I manage to sleep through the night, I feel like I’ve been awake for days. Some days im so exhausted that being awake makes me feel like throwing up and I want to crawl out of my skin. Sometimes I cant even move because my body literally refuses to work with me due to the exhaustion.

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

Sometimes. I will be talking and forget basic words that I should easily remember. Sometimes I will forget what I am doing while in the middle of doing it.

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. Touch feels like I have a bruise on top of a sunburn. Bright light hurts. I cant handle being in loud places. Ive stopped going to busy stores, restaurants or even events because I cant handle the overstimulation as it causes me to flare up for days afterwards to a debilitating degree.

How has fibromyalgia affected your sleep and ability to rest?

I dont remember what a full night of quality sleep feels like. Its been years.

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

It amplifies my pain and exhaustion to a level that literally causes me to be bedridden. I can barely move but being still for too long causes extreme pain so im constantly battling not being able to move from pain with having to move because of pain and it becomes hard to breathe because of the overwhelming frustration of it all.

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

They are becoming fewer and further between. On a good day. I might be able to handle a short trip to a not crowded store or a very short visit to a friend or family members house. I still have to rest for a day or two afterwards to recover.

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

Intense noise or brightness. Crowds. Stress. Pushing myself too far. Certain foods. Heat. Cold. Alcohol. Standing too long. Walking too much. Laying down too long. Sitting too long.

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

It has stolen my independence and completely changed all of my plans. I am a shell of the old me. I cant work. I can barely even care for myself. I used to be extremely active and fit. I miss the old me.

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

Yes. I am unable to work and having to wait a year to many years to qualify for disability has also left me unable to maintain health insurance resulting in no medical care and my health worsening daily.

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

I have pretty severe medical trauma from it. I have been so gaslit and dismissed from doctors that even when I should probably be in the emergency room, I refuse to go because I feel like ill just be dismissed again. I have lost all faith in doctors at this point.

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

Terrible. Lost all hope in ever feeling better or getting proper care.

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

Horrible. Most people think im faking it or over exaggerating. I wish they knew the only thing im faking is being more okay than I really am.

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

Constantly.

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

People have distanced themselves from me because they dont want to hear about it.

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

Yes. That is non existent at this point.

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

Caused depression, anger and coldness towards people. I have become a hermit because of it.

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

I dont recognize myself and have no self esteem where I used to have plenty.

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

Not yet. Just being home by myself and left alone is really the only time I feel peaceful.

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 isnt. It is way too stigmatized and needs to be taught more to medical staff.

What would you like more people to understand about fibromyalgia?

That we arent faking it and we deserve compassion too.

How has your relationship with fibromyalgia changed over time?

I hate it. Cancer was kinder.

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 it will keep getting worse and theres no hope for help for it.

Is there anything else you’d like to share?

Doctors need to start treating it seriously because it is. Stop treating us like hypochondriac attention seekers.