Lying in bed, Elise Colquitt realised she needed to get up and use the bathroom. But when she tried to move her legs out of the bed, she just couldn’t do it.
Elise was unable to lift her arms or move her legs, and quickly realised she couldn’t shout loud enough for help from her parents, who were downstairs.
Confused, terrified, and unable to move, Elise came up with the idea that may have saved her life.
She used Siri to call her mum from her bed, telling her parents over the phone that she couldn’t move.
Her parents rushed up to help Elise go to the bathroom, at which point the family realised ‘something was really, really wrong’.
But this wasn’t the first inkling Elise had that she was severely unwell.
Since Elise, from Georgia, US, was eight years old, she had experienced symptoms that were dismissed and ignored, starting with glandular fever and finally ending with a proper diagnosis ten years later, after that night when Elise was 18 and unable to move.
Elise’s poor health began back when she was eight, when she went from a ‘bright, bubbly little girl’ to a ‘shell of her old self’.
Elise tells Metro.co.uk: ‘My mom often tells me that I became a completely different child after glandular fever. I felt drained 100% of the time. I can’t adequately describe the fatigue I felt, and still feel at times today.
‘I would sleep for hours and hours, all throughout the day and all throughout the night, and I would wake up still so exhausted. I was extremely weak. I couldn’t put much energy into even lifting my head, simply because I had no energy at all.
‘My mouth was just so dry constantly. I couldn’t do anything because of how sick I felt.’
Elise suffered with glandular fever symptoms for two years before they started to get a little better – but the symptoms would always come back.
Over the next few years, Elise visited the doctors multiple times, but they couldn’t figure out what was wrong.
One doctor told her she just needed to rest. Another advised her to take vitamins.
Then at the age of 16, Elise began to experience new symptoms.
‘I was driving down the road with my little brother and suddenly out of nowhere I got an extremely sharp pain right under my ear,’ Elise remembers.
‘Something started swelling immediately. It felt like a hard golf ball growing under my ear. The pain was so excruciating that I started to black out while driving. I pulled over and called my dad who came to pick me up.’
Elise was taken to urgent care, and was told by the doctor that it was likely caused by a bug bite – despite her having no visible bite on her skin.
After a week of the swelling worsening to the point Elise couldn’t eat or drink anything without excruciating pain, she went to another doctor, who referred her to a specialist.
This doctor told her it was actually swelling of her salivary gland, likely caused by a stone blocking a duct in the gland.
The gland was flushed using steroids and fluid – which Elise says ‘hurt like hell’.
A few weeks passed and the swelling was no better. The doctor made an offhand comment that Elise’s symptoms reminded him of his patients with Sjogren’s syndrome, an immune system disorder, but said she was ‘far too young’ to have this illness.
But he was wrong. Elise did have Sjogren’s. It took her years of pain, paralysis, and constant trips to the doctor to finally get a diagnosis.
The night Elise became temporarily paralysed followed a day when the then-student had felt weak and tired.
She had been told she had bronchitis and been prescribed steroids, and went to work after her doctor’s appointment – but noticed the weakness was getting worse.
‘When I was typing, it felt like my fingers were moving in slow motion,’ Elise says.
She went home and took a nap, but when she woke up felt her cheeks, nose, and lips were ‘tingling’. Shortly afterwards, she felt ‘extremely tired’ and needed another nap.
Even after that nap, Elise’s legs felt so heavy she struggled to move, and had to pull herself up the stairs and get into bed.
‘I got into bed, and suddenly felt something telling me to not go to sleep, even though everything in my body was begging me to,’ Elise says. ‘I got on my phone and decided to try to keep myself up for a little while longer – which is very unlike me. If I’m tired, I always immediately go to sleep, I never force myself to stay up.’
It was then she needed to use the toilet, realised she couldn’t move, and was finally rushed to hospital.
There, Elise received an ECG and was put on a potassium drip as her levels were so low. After several tests, doctors discovered Elise had kidney disease and put her into treatment for two weeks – but after being discharged, her symptoms returned.
Elise says: ‘I started getting horrible pains in my body that felt like electric shocks piercing through me.
‘My skin started feeling like I had burned it on a hot stove. I was miserable. My mouth was still extremely dry like it had been for years, my salivary gland began swelling again.
‘I couldn’t eat or drink without terrible pain, I couldn’t move without feeling like my skin was on fire and I was being shocked by electricity.
‘After suffering for a few more weeks and talking with my parents about my options, we decided to seek a second opinion. We went to the Mayo Clinic, which is over 1,000 miles away from my home. It was a long way away, but I wanted answers.’
What is Sjogren’s syndrome?
Sjögren’s (pronounced show-grins) syndrome is a condition that affects parts of the body that produce fluids, like tears and spit (saliva).
It usually starts in people aged 40 to 60 and is much more common in women than men.
It’s a long-term condition that can affect your daily life, but there are treatments to help relieve the symptoms.
Symptoms of Sjögren’s syndrome include:
- dry eyes
- a dry mouth
- dry skin
- vaginal dryness
- muscle or joint pain
- swelling between the jaw and ears (swollen salivary glands)
- rashes (especially after being in the sun)
Finally, after seeing a doctor who took her seriously and ran some specific tests, Elise received the diagnosis of Sjogren’s – an autoimmune disease that causes your immune system to mistakenly attack your own body.
Sjogren’s had been the cause of the kidney disease.
Elise said: ‘His first words when walking into the room were “Well, welcome to the club no one wants to be in! You have Sjogren’s”. He explained to me that Sjogren’s is often misunderstood.
‘He told me that for some, Sjogren’s only causes dryness, but for others, it attacks the internal organs and tricks your immune system into trying to destroy them. That’s what happened to me.
‘Sadly, there is no cure for Sjogren’s, you just have to find a medicine that helps with your symptoms the most.’
Finally, 13 years after first contracting glandular fever and now on medication, she is getting her life back at the age of 21. Though she has flare-ups – mainly caused by stress or strenuous physical activity – and sometimes needs to use a wheelchair to manage her pain, she has more good days than bad.
She also has a super supportive partner.
She says: ‘I started dating my boyfriend a year before being diagnosed. It changed our relationship a lot after, and we struggled a lot too.
‘I went from someone who could go out and do spontaneous things with him, stay out late, and just hang out, to someone that needs to sleep a lot, is in a lot of pain, struggles to walk at times because of the pain and weakness.
‘I still struggle with shame and embarrassment from being so sick at times, but he always encourages me to do what’s best for me, and he doesn’t look at me any differently for needing a wheelchair at times or for just being sick in general. It definitely hasn’t always been easy, but he has stayed by my side through all of it and I’m so thankful.’
Due to the constant misdiagnosis over the years, Elise, who was recently also diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), suffers from anxiety, and feels angry that she wasn’t diagnosed sooner.
She’s sharing her story to raise awareness of Sjogren’s and to encourage people to keep pushing for help when they know something is wrong.
‘If things had been picked up sooner, I would have been able to start immunosuppressant medications when the Sjogren’s was only affecting my salivary glands, and it likely would have prevented it from attacking my kidneys and giving me a kidney disease,’ Elise says.
‘I could have started medication sooner and not have so much pain every single day of my life.’
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