How did your fibromyalgia journey begin?
I fell sick with a very nasty virus and returned to work probably too early as I went sick again after 2 days of work, and that was enough to trigger my fibromyalgia
When were you diagnosed, and what was your journey to getting a diagnosis like?
I was diagnosed mid to late of 2018, the diagnosis was quite simple and my doctor backed everything I had researched and regarding my symptoms and issues, was diagnosed with 3 months
What did it feel like to finally have a name for what you had been experiencing?
I knew really early on what it was likely to be because of self awareness and research, so putting a name to it after only 3 months didn’t have any real impact
Do you have any idea what may have contributed to or triggered the onset of your fibromyalgia?
I’ve recently been diagnosed with combined ADHD and I self diagnosed as AUDHD, so being undiagnosed for more than 4 decades has most definitely caused it in my uneducated opinion
Do you experience fibromyalgia alongside any other health conditions? If so, how do these experiences affect one another?
I have the usual chronic anxiety and depression with AUDHD and they all fight and contradict one another every second of every day
How does fibromyalgia show up in your body and daily life? What symptoms do you experience?
Non restful sleep, poor memory, severe nerve pain, chronic fatigue, peripheral neuropathy, tightening of chest and difficulty breathing, heavy body/limbs like wading neck deep in treacle
How would you describe the pain and physical sensations you experience with fibromyalgia?
Debilitating, life ruining
How would you describe the fatigue you experience with fibromyalgia, and what impact does it have on your life?
I have to have a long nap nearly every single day and then still go to bed around 8pm and still not rested .
I can’t do long tasks of any level, but I do push myself to do small tasks or to walk to try and stay mobile and active
Do you experience brain fog or difficulties with memory, concentration, or finding words? If so, what is that like?
Yes always, I’ve always been a little like that but its getting worse and worse and worse, to the point it’s embarrassing and I feel stupid and I’m not stupid at all lol.
Slurring words and stuttering to clammer to find the word or phrase you need
Do you experience any sensitivities, such as to temperature, touch, light, noise, smell, or other things? If so, what is that like for you?
All of the above.
They cause extreme tiredness probably fatigue, creates a huge amount of head noise and head traffic which in turn becomes tinnitus and or head ache and migraine
How has fibromyalgia affected your sleep and ability to rest?
Even when I look rested or resting I’m not, fatigue is everywhere all the time, it never rests or gives you a break, it niggles like rat all the time
What is a fibromyalgia flare like for you, and how is it different from your usual experience?
Usually it’s mid to mid high pain every day, when I have a flare I am bed bound and can’t even walk, I’ll lay crying a literally writhing in pain on the bed, I’ll eventually fall asleep or pass out and sleep for however long my body needs
Do you have “good days,” and if so, what do they look like?
Very rare good days, it’s like I wake up with just low level pain that doesn’t build throughout the day and I have some energy for a change, but I pay for it for the day or days after.
I may have 1 of these days every few months
Have you noticed anything that seems to trigger or worsen your fibromyalgia symptoms?
Stress stress stress, and I’m unfortunately quite easily stressed
How has fibromyalgia affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
The impact has been awful, reduced working hours down to only 9 per week now due to pain and exhaustion caused from working.
Limited in day to day activities or chores, for a few hours in the morning on a normal if I haven’t been working previously I can do some low impact activities but this will lead to me having a long nap after and being done for the rest of the day
Has fibromyalgia had an impact on your finances or access to care?
Less work means less money, also the missed opportunities through change in health
What has your experience been like with doctors, specialists, and the healthcare system?
Ok but it’s clear they don’t know how to treat us other than try the usual meds and physio, then I feel like we are left to rot after because no one knows how to make things better for us
What has your experience been with treatments, medications, therapies, lifestyle changes, or other approaches to managing fibromyalgia?
I’ve tried so many things and changes over the years and nothing ever works really long term so it’s a game of micromanaging myself and my brain every single second of every single day to try to not spike my pain and fatigue.
It becomes all consuming
What has it been like to live with a condition that others can’t see or may not fully understand?
So frustrating, even after 8 years being diagnosed, closest people around still don’t understand fully
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
Yes, luckily not too often but a few times
How has fibromyalgia affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
Partially understood which in turn means partially supported, but I’m stubborn so some of that is my fault also
Has fibromyalgia had an impact on intimacy or your sexual life?
Yes, I’m too exhausted of an evening to think of doing anything other than lying down and not moving
What has the emotional or mental side of living with fibromyalgia been like for you?
Horrendous, felt suicidal on and off over the years, honestly so tough and I wouldn’t wish this on anybody
How has fibromyalgia affected your relationship with your body, identity, or sense of self over time?
I’ve lost my sense of self completely, he’s gone forever.
I don’t really have a relationship with my body
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Being distracted, gaming is my distraction.
Cannabis helps the nerve pain quite a bit, and trying to keep moving with walks or low impact chores, stopping completely is the worst thing
Have you connected with others who have fibromyalgia, either online or in person? What has that experience been like?
Yes occasionally, I keep it at a single response kind of thing
How do you feel fibromyalgia is understood by the medical community, society, and the media? What do you think needs to change?
It’s not really understood at all, they show they understand to some degree because they are forced to by law or equality act but they don’t actually understand.
People with lived experience of the condition need to be heard and listened to
What would you like more people to understand about fibromyalgia?
Just how debilitating it is
How has your relationship with fibromyalgia changed over time?
Grow to hate it more and more
Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with fibromyalgia?
Not currently no
When you think about the future, what fears, concerns, or hopes do you have?
I fear and am concerned I have no future or stability, I hope that better treatment is considered or found