A woman is sharing her harrowing experience dealing with a rare skin condition that has left her bed bound as her “entire body is on fire”.
Amy Faye suffers from Topical Steroid Withdrawal (TSW), also known as red skin syndrome, which can occur after stopping use of topical corticosteroids after long-term use.
Despite suffering from oozing wounds, skin pigmentation, burning sensations and reduced mobility, the 30-year-old claims that she is “continuously ignored” by healthcare professionals.
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But she is now determined to raise awareness of the effects of medicinal steroids and even took part in a march against the drug on Downing Street earlier this year.”
As soon as I stopped taking the steroid creams, within a week or two I was bed bound,” the creative director, from Cambridgeshire, told Need To Know.
“I was oozing, weeping, and had a burning red body from top-to-toe.
“I was restricted to my bed, I couldn’t walk downstairs and I could barely go to the toilet.
“When I would bend over it felt like my body would go up in flames.
“I couldn’t do anything without my body burning. It’s all you can think about because of the pain.
“And there is no break from it, you’re freezing cold, you’re burning hot – you’re trapped in hell.
“I can’t be in the bath. I have restricted showers. I can’t have any creams. It burns my body.”
Amy has used steroid creams ever since she was a baby.
But due to the “debilitating” symptoms faced each time she stopped applying them, she decided to quit cold turkey in August 2023.
And shortly, she was officially diagnosed with Topical Steroid Addiction.
Amy said: “I’ve lived with eczema my whole life.
“It was never severe – just on the creases of my arm, the back of my legs.
“I’ve been using steroid cream my entire life but it wasn’t until last year that my skin was getting worse.
“Whenever I had [previously] used the steroid cream, it would calm it down for a month or two.
“But then, the eczema came back within a week [after not using it] – worse and much angrier.
“Between January and August last year, it was the biggest fight of my skin where I was like: ‘What is happening?’”
Since then it has been a constant battle that has had a severe impact on her mental health.
She said:” I’m going through really bad pain just now. I feel like I’m back at square one.
“The healing isn’t linear and I’m trying different drugs through the dermatologist as the GP can’t prescribe the medication.
“At the moment, I’m taking medication that people with kidney transplant and chemotherapy patients take. I’ve been on that since the end of November.”
Amy now wants to raise awareness about the condition.
She said: “The healing journey is always different.
“This is such a wild condition and there are some people who are aware of it, but there are still so many people who have skin conditions who trust their doctors and have no idea.
“There are still people going in and out of hospitals and they have Topical Steroid Withdrawal or Topical Steroid Addiction but their doctors are giving them orals, injections and just going full ham with steroids.
“They don’t know that they need to stop the steroids to let their body go through the healing process.
“The reason why it happens is because you’re using topical steroids on your skin for years and then the doctors give stronger steroids and ask you to put them places where they shouldn’t be.”
Amy claims the drugs are “so much more poisonous than they’re willing to admit”.
She added: “Steroid creams are a band-aid to skin conditions.
“We had a march in March. We handed in our petition. Through the government, they are recognising TSW.
“That’s the beginning stages and we have a lot more to do but it is recognising this.
“We will be the first country in the world to have label warnings on steroid cream.
“With TSW, my ego has completely died but whatever I come out as on the other side, she’s going to be a fing strong-ass, kick-ass b*.”
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