A 21-year-old battling crippling symptoms, including back pain, hair loss and extreme fatigue, has left doctors stumped.
For almost five months, Grace Almey has been in and out of hospital in attempt to get to the bottom of her mystery illness.
But after multiple tests and a slew of appointments with experts, she still doesn’t have a formal diagnosis.
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“This has been the darkest period of my life,” Grace told Need To Know.
“It has completely taken over my life and put everything on hold for me.
“I have had extensive time off work, missed concerts, two holidays and any social events that I had planned.
“For a long time I couldn’t go to the shop or leave the house. It’s isolating and depressing.
“It has made me feel extremely hopeless.”
Grace’s problems started on 29 January when, after suffering with a sharp pain in her back and hip for two days, she went to A&E for help.
She was given an ultrasound and told she had endometrioma – a cyst filled with blood – on her right ovary.
Doctors told her to go home and take pain relief as it would resolve itself.
Grace said: “I went home, but I became more unwell as time went on.
“Eventually I went back to the hospital where they said the cyst had gone, however my symptoms remained.
“I’d spoken to doctors at least five times within a six week period.
“My time in hospital was traumatic. I was put on strong pain relief which caused me to vomit and feel dizzy.
“My friends and family could only visit certain times and I was extremely scared and lonely.”
Grace, who lives in Manchester, UK, but is originally from Scunthorpe, was eventually referred for a colonoscopy and chose to pay for private healthcare as there was a nine month wait on the NHS. It cost her £2,000.
But after her results came back normal, doctors were left baffled.
She said: “I have experienced severe abdominal and back pain, excessive bloating, bowel disturbances, extreme fatigue, hair loss, weight loss, joint pain, vomiting and mouth ulcers.
“They could not explain my symptoms.”
Grace, who works for a fashion company, was told she might be suffering from Irritable Bowel Syndrome (IBS), a chronic condition that affects the digestive system, but treatment for IBS made no difference.
Desperate and willing to try anything, the 21-year-old has overhauled her diet, cutting out gluten, dairy and refined sugars.
She says she only eats whole foods and began taking vitamin B12 and vitamin D, as well as supplements designed to aid gut health.
She said: “I stopped eating processed foods and my diet consists mainly of fruit, vegetables and organic meat.
“I would say these have helped some of my symptoms, such as joint pain and fatigue, but the stomach pain has stayed the same.”
Grace has been supported by her friends, family and boyfriend, but the long-lasting trauma of her physical illness has hugely impacted her life.
She has made an appointment with an endometriosis specialist and hopes to get answers soon.
She said: “I would just like to advise anyone going through the same thing to keep fighting as you should not have to live a life in pain with no answers.
“I feel as though I have had little help and was just being put on tablet after tablet which is not ever going to fix the problem.
“I won’t ever give up fighting for my health. Only you know your body best.”
Grace’s post online about her health struggles has been viewed by 224,000 people.
One user wrote: “Sorry you have been so poorly. I’m undergoing tests. It’s such a stressful experience. I hope you find your diagnosis.”
Another commented: “This sounds like how I was with endometriosis before my laparoscopy! Definitely worth investigating.”
“Hope you get answers soon,” wrote a third user.
Someone else said: “I am also suffering with a chronic mystery illness and really feel for you!!!! It can be beyond frustrating and isolating.”
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