How did your fibromyalgia journey begin?
The gp thought i might have ms so he sent me to a specialist and he diagnosed me with fibromyalgia and chronic fatigue
When were you diagnosed, and what was your journey to getting a diagnosis like?
2014 i was completely flawed i knew nothing about the disease or how it would affect me working.
What did it feel like to finally have a name for what you had been experiencing?
Frightening.
Do you have any idea what may have contributed to or triggered the onset of your fibromyalgia?
Childhood abuse and a cot death followed by domestic abuse with 3 partners
Do you experience fibromyalgia alongside any other health conditions? If so, how do these experiences affect one another?
Chronic fatigue osteoarthritis daily acute migraines acid reflux hyperchoesterolmania lymphyocitosis ptsd hyperglycamia 2 tias angina aneamic utis on set dementia and hypersensitive to drugs so now have to go to a specialist who manages my case.
How does fibromyalgia show up in your body and daily life? What symptoms do you experience?
Widespread pain from my hair down to my toes.
How would you describe the pain and physical sensations you experience with fibromyalgia?
Excruciating pain night and day.
How would you describe the fatigue you experience with fibromyalgia, and what impact does it have on your life?
I cant drive alone. I cant do housework. I fall asleep mid conversation. I have insomnia so im fighting every night to try to sleep but i just lie awake and try to relax
Do you experience brain fog or difficulties with memory, concentration, or finding words? If so, what is that like?
I’ve just been diagnosed with onset dementia as a direct symptom of long term fibromyagia and chronic fatigue, I’m 60.
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 cant shower it hurts too much. Most days my clothes hurt. Cant be intimate touch hurts. No sex life for 12 years. Partner of 16 years has left me 2 days ago because im never well enough to do anything.
How has fibromyalgia affected your sleep and ability to rest?
Yes
What is a fibromyalgia flare like for you, and how is it different from your usual experience?
A flare can last a long time. Skin is itchy. No energy very slurred speach unable to take in information
Do you have “good days,” and if so, what do they look like?
Not for a long time. I dont have any family over. Most have given up. No friends cause they dont understand this disease.
Have you noticed anything that seems to trigger or worsen your fibromyalgia symptoms?
Yes changes in the weather. Bathing i use a bath lift chair by the time im in the water im in too much pain to enjoy it
How has fibromyalgia affected your daily life, including your education, work, routines, plans, or the activities you are able to do?
I was a duty solicitor for 10 years and i worked for myself by offering to cover for any firm at any police station at night. During the day i would go to id parades ect. Eventually i burnt myself out and 1 day i just disappeared and walked away from it all.
Has fibromyalgia had an impact on your finances or access to care?
Not yet but ive got that to come.
What has your experience been like with doctors, specialists, and the healthcare system?
Everything is put under the fibromyagia umbrella and your usually sent on your way. You have to fight to get someone to listen.
What has your experience been with treatments, medications, therapies, lifestyle changes, or other approaches to managing fibromyalgia?
My becoming hypersensitive to drugs is making my life harder and harder. My gp is really frustrated with me.
What has it been like to live with a condition that others can’t see or may not fully understand?
Very lonely. No one understands it. No one wants to hear that your in pain again and again. Every day is a de ja vu day.
Have there been times when you felt dismissed, misunderstood, or not believed about what you were going through?
All the time everyday.
How has fibromyalgia affected your family relationships, friendships, or dating life? Do you feel supported and understood by the people closest to you?
My oldest son disowned me cause he believes im just being lazy. Mother doesnt understand it and im no use to her cause i cant help her. Brother just says let me know whenever i get a hospital appointment.
Has fibromyalgia had an impact on intimacy or your sexual life?
Sex and intimacy are non existent
What has the emotional or mental side of living with fibromyalgia been like for you?
Every day i tell myself today is a new day. But im lying to myself cause reality hits and any promises made to people that you will visit or you will drive to the supermarket or i will do the washing up. All a load of rubbish but you hope it will happen tomorrow otherwise whats the point of being here.
How has fibromyalgia affected your relationship with your body, identity, or sense of self over time?
Overweight because of all the medication and not being able to exercise. Ive aged over the last 10 years to the point that i cant look in the mirror.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
There is nothing because there is no cure. Fibromalgia mimics serious symptoms of ilnesses. So you never know whats real and whats the fibromyagia playing its game.
Have you connected with others who have fibromyalgia, either online or in person? What has that experience been like?
I tried to follow a few sites but you cant fully open up to anyone. People go on these sites to steal our symptoms so they can get pip and a mobility car. And more money. Even if you report them there is always another one right behind them.
How do you feel fibromyalgia is understood by the medical community, society, and the media? What do you think needs to change?
Fibromyalgia and chronic fatigue is still not recognised as a life long incurable disease by pip gps and anyone who doesnt have it. Its terminal and famous peoole are coming forward now and discussing the disease with the media but they still sing and dance then go to parties ect. Makes non celebrities look like liars. Lady gaga is probably the worst advocate for people like me cause then people see us and ask why we cant do housework ect we look like we are lying. If i didnt have this disease i wouldnt believe people can be this ill. So i dont have anyone to blame really. It is what it is.
What would you like more people to understand about fibromyalgia?
It is a nasty life long disease. It leads to dementia strokes heartattacks alzheimers. And eventually you get to the point where there is nothing anything they can do to help and then its lights out. My death certificate will say died of natural causes. And thats why no one should fake this disease cause when a true fibro warrior dies only a true fibro warrior will know the truth.
How has your relationship with fibromyalgia changed over time?
Ive decided to live with it and let what will be will be. You wont ever win a fight against the devil and thats what it feels like to have fibromyalgia
Despite the challenges, have there been any unexpected changes, insights, or personal growth that have come from living with fibromyalgia?
Nothing springs to mind.
When you think about the future, what fears, concerns, or hopes do you have?
None. There is nothing you or anyone can do to change how fibromyalgia and all the other diseases that come with it the longer you live the worse it gets. No cure yet. I hope one day someone finds a cure like cancer or brain tumours or medication that gives you quality of life cause we dont even have that.
Is there anything else you’d like to share?
I want to thank you for giving me the opportunity to speak openly and honestly about fibromyalgia and just saying it out loud has been such a relief. So thank you again.