Parched and tired all the time You could have 'dry body' syndrome
23:43 GMT, 9 July 2012
'The fatigue could be incredible,' said Fiona Sewell
Dry eyes are a problem for many of us at some point or another.
But when Fiona Sewell started waking each day with her eyelids sticking together and the whites of her eyes a worrying shade of red, she knew something more serious was going on.
‘My eyes constantly felt gritty and uncomfortable — I had poor vision and applying make-up was an ordeal,’ says Fiona, 50, a part-time student from Rugby.
‘Eye drops just seemed to make them worse.
'I was clueless as to what could be causing it.’
She developed other symptoms including a dry mouth, which made swallowing difficult, constipation, abdominal pain and fatigue.
‘First thing in the morning, my mouth would be so dry that when I tried eating I would end up retching and choking,’ she says.
‘The fatigue could be incredible — sometimes I had to stop what I was doing to lie down, and then I’d have the deepest sleep.’
It took eight years before Fiona was finally diagnosed with Sjgren’s syndrome, an auto-immune condition thought to affect up to half a million people in Britain.
The American tennis player Venus Williams recently revealed she has Sjgren’s, and commentators have suggested her shock early departure from the ladies singles at Wimbledon this year was down to fatigue from the condition (though she did manage to win the doubles with her sister Serena).
Sjgren’s occurs when white blood cells attack the body’s secretory glands, including the tear and saliva glands, causing inflammation and reducing the amount of saliva, tears and fluid produced.
This causes a dry mouth and dry eyes, as well as constipation, vaginal dryness, joint pain and fatigue.
‘For reasons no one knows, the immune system malfunctions and causes problems in the glands that keep things moist,’ says Dr Simon Bowman, a rheumatologist at University Hospital Birmingham and Spire Parkway Hospital.
'I haven't had a romantic relationship since the symptoms started,' said Fiona
‘We believe B-cells (one of the main types of immune cells) are particularly activated in Sjgren’s, particularly those related to salivary glands.
'But this can have an effect anywhere in the body where lubrication is required.’
It can also trigger inflammation in the joints, causing swelling and pain, and the nervous system, causing loss of feeling in the hands and feet.
Like many auto-immune illnesses, it’s a condition that affects more women than men — 20 to 30 for every man — probably because the female hormone oestrogen can interfere with the immune system.
It is most common in those aged 40 to 60, and doctors believe the menopause — when levels of oestrogen begin to fall — may have a role.
There is growing scientific evidence that there is a genetic link, and Fiona says though it was never recognised as Sjgren’s, her mother suffered from dry eyes, a dry mouth and aching limbs.
The tiredness, thought to be caused by inflammation in the joints, is one of the more debilitating effects.
‘The fatigue can be disabling,’ says Dr Bowman.
‘It can strike at any time and will come and go.
'Often patients tell me they don’t know from day to day how they are going to be.’
Complications include tooth decay (due to a lack of saliva, which helps rid the mouth of bacteria) and eye damage from ulcers on the cornea, because tears protect against infection.
It’s vital that patients have regular dental check-ups and also see an eye specialist with an interest in surface eye disease.
Another potential complication is due to the fact that as an auto-immune condition, Sjgren’s disrupts the immune system, including lymph nodes, which are distributed throughout the body and are closely related to salivary glands.
About one in 20 patients develops lymphoma, or cancer of the lymph nodes.
Worryingly, diagnosis is often missed because dentists and GPs seeing the symptoms do not always recognise it.
‘There’s quite a bit of evidence to say it takes five to ten years after first symptoms before the penny drops,’ says Dr Bowman.
Diagnosis is straightforward, involving a blood test and biopsy of one of the salivary glands inside the lower lip.
A few months after her symptoms started, Fiona became so desperate for a diagnosis and treatment that she walked into an eye hospital begging for help.
The American tennis player Venus Williams recently revealed she has Sjgren's
The consultant prescribed a preservative-free eye drop, which helped with her eyes, but over the next few months she developed other symptoms.
‘Food would stick to my teeth, so I started having to brush my teeth several times a day,’ she says.
‘I had recurrent mouth ulcers, and had to use a special toothpaste and mouthwash.’
She also suffered constipation and abdominal pain caused by reduced fluid in the intestinal tract.
‘I’d be walking down the road and the next thing I’d be doubled over in pain because of the severe constipation.
‘There wasn’t one symptom that was worse than the others. Whenever I felt I had got over one thing, something else would flare up.
‘I haven’t had a romantic relationship since the symptoms started.
'I know a lot of people aren’t very understanding with these things, so I don’t want the extra stress of a boyfriend.’
She went back and forth to doctors with various different ailments — then finally in August last year she saw a rheumatologist, who diagnosed the problem.
While she was pleased to finally be given a name for her condition, she was disappointed to be told there is no cure, only treatments to relieve the symptoms.
‘It’s a case of treating all the symptoms individually,’ says Fiona, who is studying for an Open University degree in science and healthcare.
‘I have to carry a rucksack filled with bottles of water, eye drops, mouth rinse, allergy drops, a toothbrush, mouth gel, toothpaste and eye pads.
‘On an average day, I get up early and do physio exercises for the joints in my hands and feet.
'Then I clean my teeth fully. After breakfast, I repeat my mouth-care routine, and I put in eye drops.’
She adds: ‘After dinner, I have to do the same and make sure I clean my eyelids and eyelashes and put in my lubrication.’
Like many auto-immune illnesses, Sjgren's is a condition that affects more women than men – 20 to 30 for every man
Some patients are prescribed Pilocarpine, a drug that treats the symptoms of dryness by stimulating secretion.
However, there’s no specific medication to tackle the cause, says Dr Bowman.
‘There are quite a few medications that are being used in rheumatoid arthritis and lupus that could be trialled in Sjgren’s, so we’d be keen for the pharmaceutical industry to invest in exploring those options.’
Dr Bowman is leading a 1 million clinical trial on behalf of Arthritis Research UK looking at the drug Rituximab.
This is licensed to treat severe rheumatoid arthritis, and works by attacking B-cells.
The hope is that by easing the immune response in this way the drug could dramatically improve dryness and fatigue in Sjgren’s sufferers.
‘There is good background research to suggest Rituximab is worth looking at,’ says Dr Bowman.
‘Our earlier pilot study showed that treating patients with a single course of the drug resulted in some improvement in fatigue.
‘An earlier Dutch study that looked at 30 patients also resulted in improvement in fatigue levels and the dryness symptoms.’
Patients in the new 12-month study will receive two courses of Rituximab or a dummy infusion.
Each course is made up of two infusions given two weeks apart — the courses will be given six months apart.
Meanwhile, Fiona has launched a local support group for Sjgren’s sufferers.
‘The aim is to offer support, tea, cake and laughter,’ she says.
‘I want to raise awareness about Sjgren’s.
'I’m not dying with it, but I’m going to have it for life. It’s a constant battle.’
For information on Sjgren’s syndrome, you can visit arthritisresearchuk.org