How did your fibromyalgia journey begin?

Swollen feet and hands,widespread pain and insomnia

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

Diagnosed in 2024 and the journey was very frustrating. Doctors sending me to different types of clinics when they didn’t really have a clue what was wrong with me as according to me my symptoms was too varied to diagnose.

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

It was such a relief to finally come across a doctor who told me I think I know what is wrong with you

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

The many traumas that I have have gone through in my daily life

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

Yes. I have osteoarthritis that also impacts my routine

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

When I wake up in the morning I first lay and catalogue all my pain points

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

Widespread that sometimes hop around with restless legs and sleep apnea happens at night

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

It feels like you have all this energy one minute and look like someone who hadn’t slept in days the next minute

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

Some times it is so frustrating when you have known what a certain word is, in your home language but all of a sudden you have no clue how to pronounce it or do a certain task

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

Sensitivity to sound, cold and smell but in order to relax or clear your mind you need to have background noise

How has fibromyalgia affected your sleep and ability to rest?

Restless legs is really painful and sometimes nothing you do helps

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

A flare means I do not get out of bed. Have no interaction with people and I sleep the whole time

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

Yes I do have good days. I use those to catch up with family and friends which triggers a flare

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

The cold and total inactivity

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

I have to stop working,decrease my interactions with people and activities that I enjoyed

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

Yes. I do not receive an income that would allow me to buy all the supplements that the doctors believe I need

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

Very few doctors even know what Fibromyalgia is and still believe it is a imagined illness

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

As I do not have access to proper therapies I only have medicated management that does not actually help.

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

Very frustrating as they have no idea how your own body is betraying you.

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

Every single time I have to see a new doctor which is every 6 months

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

Even when they cannot imagine what I am going through they support me and I am so glad for that

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

I had to end my relationship as it was difficult maintaining a sexual relationship

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

Isolated as I cannot do what I was used to. Mentally I had to remind myself it is not my fault.

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

I feel like a captive trapped in my own body

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

Not really

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

Yes but it made me feel very isolated as the group only posted about articles about cures for Fibromyalgia

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

It is not really understood and until a medical professional goes through the journey they will never understand

What would you like more people to understand about fibromyalgia?

Stop thinking we enjoy laying in bed the whole day, feeling unlike yourself as you cannot do what you would normally do. It is a vicious cycle that leads to depression and feeling of hatred towards yourself

How has your relationship with fibromyalgia changed over time?

Become worse because I would overdo the days I feel productive and pay for it days later

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

Yes. It has taught me to pace myself sometimes

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

I fear the time that I would not be able to help myself and may need assistance from someone outside my family as I do not want to be a burden to my family