The men left in agony by a condition that most think only women suffer
Matt’s swollen limb syndrome was triggered by his new golf shoes
When told the bright red rash on his leg might be sepsis or even a flesheating bug, Matt hazledine was shocked. Within a matter of hours, a small spot, the size of a 5p piece, had turned into an angry red rash that covered his entire left calf and thigh. As Matt, 46, recalls: ‘I began to panic that I might lose my leg.
‘My skin soon looked like a very severe case of sunburn and it felt excruciatingly painful, like someone pouring acid down my leg.’
his symptoms had come on quickly — within an hour of returning from a shopping trip he was shaking and convulsing, with a temperature over 40c.
‘It was incredibly scary,’ says Matt, a director in a firm of financial advisers who lives with his wife, Vicky, 46, an estate agent, and their eight-year-old daughter in Paddock Wood, Kent.
however, after two days on antibiotics, and a morphine drip for the pain, Matt was told he had neither sepsis nor a flesheating bug: he had cellulitis, an infection of the deep layers of the skin and tissue.
Usually triggered by a bacterial infection, in Matt’s case it was thought this was caused after he developed blisters from wearing new golf shoes.
Cellulitis can develop suddenly, causing red, swollen, painful areas. If it spreads deeper into the body, it can cause fever nausea, dizziness and confusion.
The good news is that it’s treatable with antibiotics; the bad news is that it can lead to another complication, as Matt discovered. For as he prepared to leave hospital two weeks after being admitted, his left leg started to swell.
‘It was about 50 per cent bigger than my other leg,’ Matt says.
he had developed lymphoedema. ‘Oedema’ refers to a build-up of fluid which causes swelling in the affected area. Lymphoedema occurs when the lymphatic system, which drains waste from tissues, becomes damaged.
As A result, lymph fluid — which contains immune cells and helps carry away waste — can’t drain as normal, causing swelling and ultimately thickened skin.
The swelling typically affects the legs and arms, although it can strike other areas, including the genitals, breasts and abdomen.
The swelling can be so severe and painful that it can make the affected limb hard to use.
Lymphoedema is usually thought of as a side-effect of breast cancer treatment, when lymph nodes — small glands that filter lymph fluid — are removed.
Yet this accounts for only an eighth of the estimated 240,000 or more Britons living with lymphoedema, says Professor Peter Mortimer, a consultant dermatologist at st George’s hospital, London.
Although lymphoedema is twice as common in women, men can develop it, too.
The condition is linked to being overweight and age. But the main causes are an infection that then damages the lymph system, or a genetic fault with the lymph system, which is how babies or children can develop it.
not only can cellulitis trigger lymphoedema, but vice versa. having lymphoedema can increase the risk of future bouts of cellulitis as lymphoedema impairs the immune function of the lymph system so it can’t fight off infection effectively.
stuart hassel, 47, who developed lymphoedema after treatment for leg cancer, has had 25 attacks of cellulitis in 13 years.
‘I’ve had nine attacks in the past six months and been hospitalised three times — I’m on very strong intravenous antibiotics I can administer at home,’ says stuart, a pharmaceutical company executive, who lives in Maidenhead, Berkshire, with his wife, Andrea, 43, and their two children, Thomas, 16 and ella, 14.
stuart is fortunate that his lymphoedema has been diagnosed. Professor Mortimer says often it is not, and warns that there is a hidden epidemic of lymphoedema in the UK.
‘It is one of the least-recognised illnesses — among both doctors and patients. It’s possibly the most neglected area in medicine,’ he says. ‘It doesn’t kill you, but some of the infections it can cause, such as cellulitis and sepsis, certainly can. It’s far from being just a cosmetic problem.’
Yet it sometimes gets mistaken by GPs as a build-up of fluid not connected to the lymph system, and they prescribe water tablets. ‘ These don’t improve lymphoedema, they just make you pass more urine,’ says Professor Mortimer.
‘There can be lots of causes of oedema, including heart failure, but any oedema lasting more than three months means the lymph system isn’t working properly and it could be lymphoedema.’
Lymphoedema can be diagnosed with a lymphoscintigram where a radioactive dye is injected into the body and then tracked using a scanner to see how it moves through the lymphatic system.
Unfortunately, there is no cure, but ‘there are lots of treatments that can improve the symptoms’, says Professor Mortimer, adding that the earlier lymphoedema is treated, the better, as it gets progressively worse.
‘We need more recognition of the serious complications lymphoedema can cause, such as repeated attacks of cellulitis,’ adds Professor Mortimer, co-author of a new book, Let’s Talk Lymphoedema, a practical guide to treating the condition.
he wrote it with Gemma Levine, a photographer who could no longer use heavy cameras because of lymphoedema caused by breast cancer treatment. ‘Unfortunately, a lot of patients are just told lymphoedema won’t kill them and they have to learn to live with it,’ says Professor Mortimer.
And some local health authorities won’t pay for treatments for lymphoedema because ‘ it’s wrongly seen as a cosmetic problem’, adds Karen Friett, chief executive of the Lymphoedema support network charity.
‘Where services are provided, they tend to be only for people who have had cancer treatment,’ she says.
Matt was given only a pair of compression stockings when he left hospital with lymphoedema in June 2011.
‘The aftercare was nonexistent, even though my left leg was 55 per cent bigger that my right,’ he says. ‘I couldn’t get any trousers to fit me and I was very self-conscious.’
Matt paid privately for manual lymphatic drainage — a form of massage to encourage lymph drainage — and multi- layer bandaging, a technique that involves having layers of bandages applied tightly to the affected area; the pressure encourages the lymph fluid to flow and reduces the swelling.
‘ They temporarily eased my symptoms, but my leg remained swollen. I began to feel pretty low and isolated as not many men seemed to have the condition,’ says Matt. ‘I resorted to having my trousers altered by a tailor, adding panels. I had to wear a surgical stocking all the time and I was so self- conscious I’d never wear shorts in public in hot weather.’
exercise is normally recommended as the first line of treatment, as the lymph system needs movement for lymph fluid to flow. The nhs offers compression bandaging techniques for severe cases, and compression stockings or sleeves for milder ones.
Over the past six years Matt has tried almost every treatment.
‘As well as multi-layer bandaging I used a compression leg pump — an inflatable sleeve on my leg, which had a cycle of inflating and deflating, squeezing fluid out of my leg,’ he says. ‘But it gave me only temporary relief.’
‘In 2014 I became the seventh person in the UK to have a lymph node transplant, where nodes were removed from my collar bone and transplanted to my groin area in the hope they would improve drainage in my leg.’
he had the operation at Broomfield hospital in essex as part of a trial.
‘This did improve my symptoms for a few months but it then stopped working,’ he says.
Matt also tried exercise — using a cross-trainer and doing leg-press exercises.
BUT by last summer, Matt’s symptoms were worsening and his heavy leg meant he found it difficult to walk.
‘It was so painful and I developed lower back problems — I felt like an 80-year-old.’
In January this year he resorted to having liposuction to suck out fat cells from his leg. Although it can’t cure the damaged lymph system, removing fat makes it easier to control the swelling with compression bandages.
‘It’s early days but my leg is currently 10 per cent smaller than it was,’ says Matt. ‘ I’m feeling upbeat about it for the first time.
‘Just being able to walk without the weight of a heavy leg is fantastic. It looks like there is finally light at the end of the tunnel.’
stuart hassel is not suitable for a lymph node transfer as he has damaged lymph vessels rather than nodes.
he still has the option of surgery called lymphaticovenular anastomosis to connect small lymph vessels under the skin to small veins, allowing the lymph fluid to bypass blocked lymph vessels. It’s currently only available in the nhs in Wales on a trial basis.