NOT JUST THE flu...

I’m determined to beat my rare condition

2017-10-05 - By Sylvia Howe, 60, from Suffolk

My throat was sore, I had a temperature and felt run down.

‘I think I’ve got a touch of the flu,’ I told my husband Ken.

I went to see my GP, who suspected I had a virus.

Allowing it to run its course, I just got on with things.

But, over the next few nights, in February this year, I began to suffer terrible night sweats.

I soaked the bed sheets and had to change my pyjamas six times a night.

‘This is just ridiculous,’ I sighed to Ken, 60.

I’d suffered night sweats about three years before.

They’d only lasted a short time, so I’d just brushed them off.

But now, they were back and much worse this time!

Soon, they got so bad that I couldn’t sleep at all.

At my wits’ end, I went to see an out-of-hours doctor.

Concerned it may be a problem with my heart, they sent me to see another doctor at Ipswich Hospital.

There, I had blood tests and was hooked up to a drip for antibiotics. By now. I was really weak. One minute I’d be hot and sweating profusely, the next I was freezing and shivering.

But, worst of all, I couldn’t sleep because of the night sweats – I’d soak the sheets up to eight times a night and have to change them.

I felt really ill and exhausted and my whole body seemed to ache.

My blood count was low, too, so I needed a blood transfusion.

Tests kept coming back clear, though.

Doctors didn’t seem to be able to figure out what was wrong with me.

I spent the next week in hospital suffering badly.

I even developed a horrible, itchy rash all over my body.

My whole body just seemed to throb with pain and the sweats just weren’t letting up.

When I put a paper towel under my arm, within seconds, it was saturated.

I had no energy, it took so much effort even to get up to use the shower or toilet.

Poor Ken was worried sick about me and he barely left my side.

Then, finally, after two weeks in hospital, a doctor came to speak to me.

‘We believe you might be suffering from adult-onset Still’s disease,’ she said.

She explained it’s a rare type of inflammatory arthritis. And the hospital had only heard of two other cases of it.

The cause is unknown, its just one of those things.

‘There’s no cure,’ the doctor continued, ‘but steroids may help to ease the symptoms.’

Although I was immediately put on a course, it took quite a while for me to improve.

A side effect of the steroids was that I just couldn’t sleep. I’d lie wide awake all night. I had to spend another few weeks in the hospital until I was ready to go home.

Even then, I still ached from head to toe.

And I was also still suffering terrible night sweats.

An itchy rash had developed on my scalp, too.

I even started losing hair.

I’d wake up and find strands covering my pillow.

‘Why is this happening to me?’ I sobbed, in distress.

Doctors put it down as a symptom of the disease.

So, I continued taking steroids and gradually my condition began to improve.

I was getting fewer night sweats and I didn’t ache quite so much.

I’m still not a hundred per cent better yet, but I’m certainly getting there.

I should finish my course of steroids in December.

But doctors warned that it’s a reoccurring condition, so it could come back…