How did your fibromyalgia journey begin?

I had Rheumatoid Arthritis at first then Fibromyalgia came, its very painful but I have other health issues as well.

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

I was diagnosed in 2019 and given Amitriplene for the pain.

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

A sign of relief

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

My marriage isn’t so great, the stress of this is almost all of my life.

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

Its very draining i have Rheumatoid Arthritis, Lung disease, diabetes type 2 , Mysteenis Gravis and Fibromyalgia the 3 put together RA , MG and Fibromyalgia are the worst combination you can get …they’re all muscle related and joint pain its lethal very draining and very painful and also I have a deformed left lower leg due to catching depis and the Strep A bug abroad.

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

Sharp pain, i can’t pick up my upper arms very sore.

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

Thrombin pain and lasts throughout the day.

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

Can’t seem to get out of bed as often as I would like to.

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

Yes I have brain fog, can’t remember things due to the overwhelming pain, sometimes staying quiet is the best option.

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

Don’t like light, sensitive to fabric

How has fibromyalgia affected your sleep and ability to rest?

Sleep is screwed up, some nights am awake the pain doesn’t let me sleep.

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

More painful can’t get out of bed, feel cold

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

Most days am ok I can manage, then the days am not ok I like to stay warm near my bed 

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

Not really on a personal level like my marriage it goes sky high.

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

I always need someone with me in the kitchen to help me, due to other health issues I need help during the day, I have carers that come in and help

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

No not really.

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

Its been ok, am currently not on any specific medication for my fibromyalgia only Amitriplene

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

I have my grown up children help me do daily tasks around the house, we have a cleaner who comes, my children do most of the cooking I just tell them how to do it

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

They don’t understand at all, they just seem to think it’ll go away .

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

Yes definitely many times

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

Supported by my children yes, but with life partner no

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

We don’t have a sex life. I think mutual respect and understanding is first and my other half doesn’t have this .

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

Draining sometimes frustrating

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

You have to accept it and move on, no other way around it.

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

A massage helps if regularly required.

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

Yes not much, I have found that ppl don’t really talk

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

More clinics that ppl can go to for help or just a talk

What would you like more people to understand about fibromyalgia?

That it is a non visible disability that affects the body 24hrs a day and that there’s no time off from it

How has your relationship with fibromyalgia changed over time?

Learn to accept the change

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

Understanding more of yourself in a better format

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

Fears yes alot but I try not to think of them

Is there anything else you’d like to share?

I with there were groups where we could meet up with and go out with who share the same outlook of life on health issues.