Fibromyalgia and chronic fatigue have robbed Faye Dempsey of her old life
ust 18 months ago, Faye Dempsey had a career, ran up to eight miles a day and loved a night out with friends.
Now, she says, she’s like a prisoner in her own body, wracked with pain so badly there are days when she is virtually bedridden.
The 33-year-old has fibromyalgia, coupled with chronic fatigue syndrome, which means if she manages to leave the house and go out it can take days to recover.
“I try to keep active by taking short walks and I’ve even tried swimming, but it’s unbelievable how hard things are,” she says. “I ache the whole time and I’m so sensitive to everything – noises feel like hot rods in my ears.”
Faye, who lives in West Kirby, first started to notice radiating pain in her back going down her legs in the summer of 2014.
“The symptoms were on and off at first so I was able to half live a normal life,” she recalls. “I’ve battled depression and anxiety since my late teens so I put it down to that. But as it got worse, and I was rarely having a good day, I knew in my heart that something else was wrong.”
Faye went back to the doctors repeatedly asking for tests and eventually a routine blood check revealed neutropenia – a low white blood cell level.
“That can be a sign of blood or bone cancer and even my family were starting to think that’s what it must be because even the highest strength painkillers weren’t working and I constantly felt sick and feverish.”
A bone marrow biopsy came back clear. “And I should have been jumping for joy but part of me thought, if it’s not cancer, what the hell is going on? What am I going to do?” she admits.
Last autumn, following an agonising year of ongoing investigation, autoimmune and viral conditions were also ruled out as a cause of the problems and the neutropenia. After a process of elimination, her haematologist and rheumatologist diagnosed fibromyalgia with an overlapping sleep disorder, chronic fatigue syndrome.
Faye says she’d never heard of fibromyalgia before, but was conscious of a stigma surrounding fatigue syndrome and ME.
“I know some people think you’re just tired, or using it as an excuse, but it’s so different from normal tiredness.
“Sometimes you can’t lift your head off the pillow. I can have a full night’s sleep but in the morning it’s like my eyes are glued shut and I’ve not slept at all.”
There is no known cure for fibromyalgia, and even its cause is uncertain. “I’ve never been sat down and told why I suddenly developed it, but from what I’ve researched myself it can strike after illness or trauma,” she explains. “I had been in a car crash, and I’d been through some emotional trauma over the past few years, so that’s the most likely explanation for mine. I think my body just decided it couldn’t take anymore.”
The physical changes which have come with both conditions have meant the once active athletic former manager has had to give up work and, with no cure, she is resigned to dealing with the pain on day by day basis.
She is on liquid morphine every two to four hours, and the maximum dose of codeine, supplemented with a CBD vaporiser when the pain is most severe.
There are good days and bad days, Faye adds, and it can be very isolating but she is determined not to let the conditions overwhelm her.
“I live with my parents so I’m lucky, I’m definitely not the worse case scenario,” she says. “There are people suffering with fibromyalgia who never move from their house. I live near a park so I can walk out and get some fresh air, even though sometimes it feels impossible even to take my dog for a walk.
“But the best thing for me has been social media, that’s been a tremendous support. I’ve been able to reach out to people who don’t know me and they’ve reached back so I’ve gradually built up this virtual friendship group.”
Twitter especially has allowed Faye to get in contact with sufferers all around the world. “So we’re able to talk about how it’s treated where they are, and we’ve got this incredible connection. They know what you’re going through which makes such a difference.”
She still has days, she admits, when she feels almost bereaved.
“A part of me has died and I don’t think it will ever come back,” she reflects. “When you can’t get out you spend so much time alone, looking at yourself in the mirror and wondering where you’ve gone.”
But with an informal group already established, Fay now wants to create a network to join forces with other sufferers and supporters and spread understanding.
“The biggest problems are the stigma and people thinking, I’ve heard of that but I’m not sure what it is,” she says. “But I am strong enough to campaign, to get the word out there and push for more help to be available, and I’m happy to do it because it gives me a purpose. I feel like I can do something good and all this isn’t for nothing.
Faye is setting up her support network on Twitter, @fayedempsey1