How did your fibromyalgia journey begin?

I’m unsure really as I did have a symptom that was being investigated during COVID

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

A trip to the doctors with my stroller and was asked why I was using it and they said that wasnt to my arthritis then said I think you have fibromyalgia

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

Well the name doesn’t really do much as there is no cure or answers which would be nice

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

Absolutely no idea whatsoever

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

Yes just effects of the meds I take and more pain tiredness etc

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

Pain fatigue anxiety depression

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

Exhausting

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

I suffer with fatigue alot due to everything you do seems to take a lot more energy even things like showering or just walking can take so much effort cause pain and it’s so tiring

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

I do suffer with brain fog it affects memory and also if having conversation can forget word or what you was talking about and get words mixed up like put the fridge in the milk for example it is frustrating and sometimes embarrassing too

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

The slightest Touch can hurt and temperature causes flare ups noise can be overpowering at times just like I can’t del with it

How has fibromyalgia affected your sleep and ability to rest?

I’m always tired but find it difficult to sleep due to the pain

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

Everything 10x worse

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

I do have some good days but even then in pain

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

If I have done a lot one day I tend to suffer for days after

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

I have had to stop work most of my independence gone as have to rely on people and I don’t make plans as I never know how I’m going to feel

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

It’s had impact to my finance as I rely on taxis which is costly and extra AIDS I need to help me

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

I have got to a point where they have basically told me they can’t give me anything else for the pain and I been pain management and was told it’s all we are learning this

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

Very minimum

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

It is frustrating as each day looks different so people that haven’t seen me using my stick or wheelchair and they say oh what happened and if I’m not in the wheel chair how are you? Oh at least your out of the chair

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

Yes there are times the worse one is not being beloved or misunderstood as it is hard to explain

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

I do have a good and understanding friendship group but struggle to get out so don’t always get to see them and my husband tries to support and has been there before so understand some

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

Well yes being in pain you cant even when you want to or your partner wants and you know you just cant because of the pain without making it worse but my husband understand

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

Horrendous it really does get you down not being able to do things you could do before or want to and the brain fog also

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

I get angry with myself upset I feel as though i am a different person and grieve for the person I used to be

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

Sometimes if emotionally drained I try and go out somewhere with people and like enjoy myself other than that nothing

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

I have a very good friend who has it and it’s nice to be able to talk about something and feel as your not on your own or it isn’t just you

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

I don’t think it really is as all I’ve been told is we are learning this learning that

What would you like more people to understand about fibromyalgia?

How it affects the people who have it and where you can get support

How has your relationship with fibromyalgia changed over time?

Got worse

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

Nope

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

I don’t like to think of the future I try to have positive look on life but it is difficult my only fear is death