How did your fibromyalgia journey begin?
I was in a DV & SV relationship for 14 years I was scared of my ex husband bottled everything up lost almost all my family & friends
I started getting pain in different places hips tummy wrists
I went to my GP to be told it was peri menopause
This went on a number of months not getting any better
Then I had low blood sugar low blood pressure electric shocks from almost everything I touched
Gp sent me to a endocrinologist who said my blood results show I’m no where near peri menopause
Back to Doctor for answers
When were you diagnosed, and what was your journey to getting a diagnosis like?
2022 multiple tests X-rays then referred to pain management and a dr at the hospital diagnosed me with fibromyalgia
What did it feel like to finally have a name for what you had been experiencing?
It felt good to finally get answers but every time I told anyone I had fibro I saw their faces and the horror stories of pain and torture
Do you have any idea what may have contributed to or triggered the onset of your fibromyalgia?
Stress & Trauma
Do you experience fibromyalgia alongside any other health conditions? If so, how do these experiences affect one another?
Yes fibromyalgia osteoarthritis in my hip, degenerative arthritis in my wrists, it’s just all pain that differs daily
How does fibromyalgia show up in your body and daily life? What symptoms do you experience?
Pain that moves
Noise & light sensitivity
Bladder weakness
Insomnia
Restless legs
Weakness in my joints
The cold hurts so bad
Anxiety
Depression
Balance and co-ordination issues
Brain fog
Tiredness that never gets fixed with sleep
How would you describe the pain and physical sensations you experience with fibromyalgia?
Pins and needles
Cramps
Shooting stabbing pains with a permanent ache everywhere
How would you describe the fatigue you experience with fibromyalgia, and what impact does it have on your life?
I never wake up refreshed I feel worse than before I went to bed
Once exhaustion hits I just have to rest
I have lost all my friends as I cancel plans can’t go busy places
I zone in and out during conventions people think I’m just not listening or not interested
Do you experience brain fog or difficulties with memory, concentration, or finding words? If so, what is that like?
My hubby comes home and has to find things in the wrong places often milk in cupboard and tea bags in fridge
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 temperature changes
Noise smells so much I can’t handle these days
How has fibromyalgia affected your sleep and ability to rest?
I only have about 90mins sleep a night
If it’s not toilet trips it’s restless legs
What is a fibromyalgia flare like for you, and how is it different from your usual experience?
When in a fibro flare I can’t focus on a single thing not the tv not crochet I’m like a zombie getting electrocuted constantly
Do you have “good days,” and if so, what do they look like?
Yes on a good day I can use my walker and walk my dog 4 house up the road to my friend home use I can get myself a drink will brush my hair and put lipstick on
Have you noticed anything that seems to trigger or worsen your fibromyalgia symptoms?
Stress cold weather conflict
How has fibromyalgia affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
It’s changed everything
Has fibromyalgia had an impact on your finances or access to care?
Yes I’ve had to pay for help
for equipment to make days easier
What has your experience been like with doctors, specialists, and the healthcare system?
Not good till more recently where the new doctors seem to listen and understand
What has your experience been with treatments, medications, therapies, lifestyle changes, or other approaches to managing fibromyalgia?
I’ve spent 12 grand on therapy and 2 grand on equipment had to sell my house to pay for it
What has it been like to live with a condition that others can’t see or may not fully understand?
I’ve heard people talk saying I’m lazy sit at home living off the tax payer on benefits
I don’t even get benefits
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
Yes too many to mention
How has fibromyalgia affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
My hubby is amazing and really understands but it’s my kids that struggle my oldest son has to help me do even the simplest tasks yet my youngest son don’t understand how now I can’t go places like I use to it takes so long to get anything done I have to rest so much
Has fibromyalgia had an impact on intimacy or your sexual life?
Yes I have no confidence now my meds made me gain weight
I’m not as mobile and can’t get into positions like I once could
What has the emotional or mental side of living with fibromyalgia been like for you?
A total rollercoaster of I’m not good enough for him to he has to care for me he deserves better everyone would be better if I wasn’t here to today I’m happy I’ve got washed dressed and now I need sleep proud I’ve get ready but then it all goes down hill again as I feel lazy resting
How has fibromyalgia affected your relationship with your body, identity, or sense of self over time?
Yes I never let anyone see me without my hair and makeup done now I hate myself for not having the energy to do it
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
My assistance dog helps me daily gives me a reason to get out of bed and gives me dpt to ease anxiety
Have you connected with others who have fibromyalgia, either online or in person? What has that experience been like?
Yes I know friends who have fibromyalgia it kinda makes it worse as I see how it’s changed them so I just wait for what parts of my life will go the same way
How do you feel fibromyalgia is understood by the medical community, society, and the media? What do you think needs to change?
A nurse said the more exercise u get the easier it will be and that I need to try harder
What would you like more people to understand about fibromyalgia?
That everyday is different every hour in each day can be different
How has your relationship with fibromyalgia changed over time?
My sister has just been diagnosed with it recently so I’ve gone from blaming fibro for everything to accepting my life will never be as it was but with my hubby boys and dog with me we tackle the days together
Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with fibromyalgia?
I’ve learnt to slow down pace myself and when I’m done accept I can’t do no more
When you think about the future, what fears, concerns, or hopes do you have?
I’m scared to be a burden on my family
Is there anything else you’d like to share?
No