Let's Talk Lymphoedema: The Essential Guide to Everything You Need to Know

by Peter Mortimer, Gemma Levine

Overview

Lymphoedema results from a failure of the lymphatic system, causing swelling and fluid retention; it can also cause aching, heaviness and difficulty moving. Research shows that around 140 million people worldwide may be living with lymphoedema, and it affects approximately one in five women after breast cancer treatment. There is no cure for the disease, but there are ways to control the symptoms.
 
Let's Talk Lymphoedema has been written to help sufferers deal with its debilitating effects, providing information and inspiration to help them lead rich, vibrant lives. It features contributions from international experts and personalities such as Miriam Stoppard, and the actress Kathy Bates, who herself suffers from the condition.
 
Including essential medical information (immune system and infection; microsurgery; obesity; podiatry); treatment advice (compression garments; physiotherapy; exercises); and day-to-day support (psychology, sexuality and others' perceptions), this is an essential read for sufferers, friends, family and medical professionals alike.

Product Details

ISBN-13:	9781783962853
Publisher:	Elliott & Thompson
Publication date:	06/01/2017
Pages:	210
Product dimensions:	6.10(w) x 9.10(h) x 0.80(d)

About the Author

Professor Peter Mortimer is a consultant dermatologist working at both St George's Hospital and the Royal Marsden Hospital in London. He is also Professor of Dermatological Medicine to St George's University of London. He has spent most of his professional life in the research and clinical practice of lymphoedema and related disorders of the lymphatic system. He is a founder of both the Lymphoedema Support Network and the British Lymphology Society, and is internationally recognized for his work in lymphoedema. He is the author of Lymphoedema: Advice on Self-management and Treatment (2004). Gemma Levine is a photographer who has shown over 60 exhibitions around the world, including a celebration of 25 years of her work at the National Portrait Gallery in 2001. She has published 21 books, including Go With the Flow (2012), an inspirational guide and practical resource to living with cancer following her own diagnosis with breast cancer. As a result of her cancer, she has lived with lymphoedema for a number of years.

Read an Excerpt

Let's Talk Lymphoedema

The Essential Guide to Everything You Need to Know

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By Peter Mortimer, Gemma Levine

Elliott and Thompson Limited

Copyright © 2017 Peter Mortimer
All rights reserved.
ISBN: 978-1-78396-286-0

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CHAPTER 1

Introducing the Lymph System

'I had little idea what the lymph system was until my (best) friend Ross got lymphoma, which is a cancer of the lymph system. I now know how important the lymph system is for keeping us healthy and how important exercise and, particularly, sport are for it to function properly.'

Sir Andy Murray (twice Wimbledon champion, US Open tennis champion, twice Olympic singles champion, Davis Cup winner for GB)

This book is not about cancer, but it is about the lymph system, a part of our body most people know very little about, and one of the problems that arises when it does not work properly: lymphoedema. To understand the condition fully, we need to first understand a little bit about the lymph system and how it works.

WHAT IS THE LYMPH SYSTEM?

Most of us are familiar with the idea that the heart circulates blood around the body, carrying the oxygen, nutrients and fluid that all the different types of cell in our bodies need to work. This is called our cardiovascular system and it operates along a network of blood vessels such as arteries, capillaries and veins.

What most of us don't realise is that we also have a second circulatory system called the lymph system. It acts as the drainage route for the body's cells, carrying away excess fluid, waste materials, immune cells and proteins from the tissues. The fluid that leaves the cells and enters the lymph system is called lymph, and the system itself is made up a network of lymph vessels and glands (which are sometime referred to as 'nodes').

HOW DOES THE LYMPH SYSTEM WORK AND WHY IS IT IMPORTANT?

The way that lymph moves through the body is a little bit like the way rainwater makes its way to the sea. When it rains, drops of water drain through the soil and then enter rivulets and streams. These in turn flow in a one-way direction, joining bigger and bigger river channels until finally they empty out into the sea.

Lymph flows in much the same way. It drains from individual body cells into the smallest lymph vessels, which are much like the tentacles on sea anemones. Lymph then travels in a one-way direction through a network of increasingly bigger lymph vessels until it eventually completes its journey in the upper chest where it discharges into two big veins. The lymph fluid, now mixed back into the bloodstream, will then either flow back out to the tissues or, if there is excess fluid in the body, it will be excreted through the kidneys and exit the body through the bladder. The lymph system is therefore instrumental in controlling the amount of fluid in the entire body, i.e. both in the tissues and the blood.

As it moves along the lymph system, the lymph fluid itself passes through a series of lymph glands. There are hundreds of glands in the human body, each one the size of a small bean. They are situated in varying numbers around the body, but tend to cluster near major junctions in the lymph system, in areas such as the neck, armpit and groin.

Lymph glands perform two basic functions: they clean up the lymph before it re-enters the bloodstream, by sieving out, trapping and destroying foreign materials; and they monitor the lymph for telltale signs of infection in the body, playing a vital role in our immune system.

Immune cells are released from blood vessels throughout the body in order to patrol the tissues looking for germs. If they encounter the germs that cause infection, such as bacteria, viruses and fungi, the immune cells exit the tissues via the lymph vessels and head for the lymph glands. Once there they trigger an immune response, whereby the lymph glands produce and mobilise other immune cells specifically tailored to kill the offending germs. These immune cells then travel from the lymph glands along the lymph system, into the blood stream and back to the site of infection to kill the germs.

HOW DOES LYMPH FLOW?

The flow of the lymph system is vital to its healthy operation. Blood is pumped through the body by the heart. The lymph system, on the other hand, requires movement and exercise to make lymph flow. If we do not move much, neither does the lymph.

The movements we make during our everyday activities involve the expansion and contraction of the various muscles in our bodies. These muscle movements in turn serve to massage and squeeze the tissues around them, forcing excess fluid out of the tissues and into the smallest lymph vessels. The same principle also drives lymph along the tiny lymph vessel tubes and keeps the process going: when the muscles relax and the 'squeeze' stops, the tissues recoil, so allowing the now empty lymph vessels to suck up more fluid from the tissues.

The process is similar to what happens when you squeeze and release a sponge underwater. Squeezing a wet sponge drives water out through the pores and from the network of channels within the sponge. Releasing the sponge under water then absorbs water back into the sponge where it stays until the sponge is next squeezed.

The larger lymph vessels further along the lymph system have special muscle cells built into their walls. This allows the vessels to generate their own contractions, propelling the lymph onwards – up a leg or an arm, for example. These larger vessels are split into segments separated by one-way valves – so that they look much like a string of sausages. As one section contracts, the lymph is pumped through the open valve into the next section, with the valve preventing reverse flow so that the lymph always moves in one direction, much like lock gates on a canal, which ensure the water can only flow one way.

HOW DOES THIS RELATE TO LYMPHOEDEMA?

Lymphoedema occurs when the lymph system fails: lymph vessels can get blocked or close down at some point along the drainage route; valves can fail allowing the lymph to flow backwards, towards the tissues; and the ability of the lymph vessels to contract can fail, in which case lymph is not pumped towards and beyond the glands.

Any impairment to the lymph drainage system causes the fluid to back up and collect within the tissues instead of draining away. As we will see in the next chapter, one of the most immediate and obvious symptoms of lymphoedema is therefore swelling, but there are many more potential symptoms and complications.

CHAPTER 2

What Is Lymphoedema?

Lymphoedema is a chronic condition caused by a failure in the lymph system, meaning lymph is not draining from the body. There are many reasons why it might fail (see Chapter 4) but the end result is generally the same: a build-up of fluid in the tissues causing chronic swelling with thickened skin.

WHERE DOES LYMPHOEDEMA OCCUR?

The build-up of fluid associated with lymphoedema can occur anywhere where there is impaired flow in the lymph system – whether in the smallest lymph vessels, the larger vessels or, most commonly, in the various lymph glands located around the system. For example, a problem with the lymph glands in the left armpit could lead to lymphoedema occurring anywhere 'up river' from that point – i.e. the left breast, the upper left-hand side of the trunk, and the whole of the left arm. Similarly, if there is an impairment to the lymph glands in your right groin area, this could lead to problems in the adjoining side of the lower abdomen below the belly button, or anywhere along your right leg. In this case, due to the influence of gravity, you would be most likely to experience swelling in the foot, ankle and lower leg.

Lymphoedema most commonly occurs in the arm or leg, but it can appear in other parts of the body as well. It is less likely, however, to appear in the genitalia or in the head and neck area. This is because these areas of the body have lymph drainage on both sides, so there would have to be a problem on both sides to cause lymphoedema to occur.

It is worth re-emphasising that lymphoedema is not always caused by problems in the lymph glands – if there is sufficient compromise in lymph flow at any point along the drainage pathway then swelling can occur. For example, lymphoedema of the foot could result from impaired drainage within the small lymph capillaries of the foot; from a failure of the main lymph vessels of the leg to pump properly; or from obstruction in the groin.

FLUID RETENTION AND SWELLING

Lymphoedema literally means 'swelling caused by the build-up of lymph fluid'. It can develop in different ways, but generally starts as mild, reversible swelling, that may go away at first, but at some point will become more permanent. It often becomes particularly noticeable when lymph drainage is put under stress – for example, during an extended period of inactivity such as on a long-haul flight. In practice this swelling might mean that the rings on your fingers start to feel tight, your face and tummy become bloated, or your ankles begin to balloon. This swelling can then in turn cause further symptoms such as heaviness, aching and a general discomfort.

One problem with diagnosing lymphoedema (see Chapter 6) is that it shares many characteristics with 'oedema', which is a swelling caused by the retention of any fluid. Oedema can often occur during pregnancy, before a period or sometimes in the heat (due to a redistribution of fluid). However, it can also be a sign of a serious medical condition such as heart, kidney or liver disease, so it is important that a complete assessment is carried out to exclude these possibilities.

In fact, to make diagnosis more complicated, all cases of oedema involve the lymph system because oedema occurs when blood vessels under the skin release more fluid into the tissues than the lymph vessels can drain away. The difference between oedema and lymphoedema is that oedema affects the lymph system, whereas lymphoedema is caused by a fault in the lymph system and involves a build-up of lymph rather than just fluid.

Since lymph contains other elements including waste products and immune cells, the swelling produced by lymphoedema tends to have a more solid texture to it. The fluid in oedema, on the other hand, can be displaced by pressure, and so indents, or pits, very easily if a finger is pressed on the skin. A good example of pitting is the indentation left by pressure from the rim of a sock. This can be tested to some extent by pressing a fingertip firmly on the skin surface for twenty seconds (assuming it is not painful). If a dent from your finger remains after release, then you have fluid oedema.

THICKENING SKIN

Over time lymphoedema can cause changes to take place in the skin, making it much thicker. The worse the swelling, and the longer lymphoedema has been allowed to progress, the worse the skin becomes – it can often become twice as thick as it would normally be. We don't know why this happens, but it is probably a response to the pressure of the fluid collection within the skin, as well as the effect of inflammation from the disturbed immune cells.

The surface of the skin can also develop a warty complexion and can start to look like the bark of a tree or elephant hide. The term 'elephantiasis', which is sometimes used instead of lymphoedema, comes from this change in complexion of the skin and the fact that the swollen leg could be said to resemble that of an elephant.

OTHER HEALTH FACTORS AND SYMPTOMS

Although swelling is the main symptom associated with lymphoedema, it's not the only health problem sufferers can experience. Because the lymph system is responsible for removing virtually all excess and waste products from the body's tissues, if it is not working properly, it can affect other aspects of our health. One example is cardiovascular disease, which arises when the walls of the arteries become 'furred up' by cholesterol deposits. There is some evidence to suggest that these deposits can partly be explained by a failure of lymph drainage within the cells of the arterial walls.

The lymph system is also important for maintaining a healthy body fluid balance, which means that any impairment could possibly contribute to raised blood pressure. There is also a strong association between lymphoedema and obesity (see Chapter 4) and this association is known to work in both directions: obesity is the biggest risk factor for lymphoedema but lymphoedema can also cause obesity. However, as we shall discuss in the next chapter, the main problem associated with lymphoedema is infection – particularly cellulitis, which can pose a serious health risk.

CHAPTER 3

The Perils of Infection

The lymph system plays an important part in our immune system (seeChapter 1), so any impairment to the lymph system can lead to problems with infection.

We come into contact with germs all the time. More often than not, our immune system – with our lymph system in support – deals with these germs without us knowing about it. Sometimes we may be aware of slightly enlarged lymph glands from a sore throat – an indication that the body is fighting infection – but otherwise we are not ill. On other occasions we feel unwell and feverish with aching and headache, which are signs the immune system has had to go into overdrive to fight the infection.

With lymphoedema, the failure of the lymph system means that the immune system is compromised, and can't fight infection. It doesn't affect the entire body (unlike HIV, which is the disease that usually comes to mind when we think of a compromised immune system) – it just affects the area where the lymphoedema is present. However, that area becomes very susceptible to infections, which are difficult to eradicate and can keep coming back. A recent UK study showed that infection was common among lymphoedema sufferers, with 60 per cent having experienced at least one episode during the previous six months, and 22 per cent of those having been admitted to hospital for treatment of the infection.

CELLULITIS

One type of infection that is especially associated with lymphoedema is cellulitis – a painful and potentially serious infection of the skin, which often leads to septicaemia, or blood poisoning. It can cause profound illness with high temperatures and low blood pressure, with the accompanying threat of damage to vital organs. In Europe it is also known as erysipelas, and in the tropics it can be called acute dermato-lymphangio-adenitis (ADLA) when associated with elephantiasis.

Cellulitis is most often caused by some form of surface skin break – a cut or insect bite for example – that introduces bacteria into the region, where the immune system is unable to deal with it. This is one of the reasons skin care is so important in managing lymphoedema (see page 95), although there are other ways the harmful bacteria can enter the body.

RECURRING INFECTIONS

People who suffer with lymphoedema often find that infections, such as cellulitis, can easily recur; in some cases striking as soon as you have recovered from the previous bout. It remains unproven but it is more than likely that in some cases, because of the weakened immune system, the infection is never properly eradicated. Antibiotics used to treat infection are intended to aid your immune system, so if your immune response is impaired, they are not always effective. This would explain why some patients with lymphoedema and recurrent cellulitis find that they can bring on an attack just by getting overtired, overstressed or by over-exercising. As one patient explained: 'It's as if the infection is asleep in my leg all the time and then, when it sees I am run down, it wakes up to take advantage.'

Recurrent attacks of cellulitis can be one of the most distressing and frightening aspects of having lymphoedema. Attacks can come on without warning, sometimes mild, sometimes severe, with no rhyme or reason as to why one attack might be more debilitating than another. This element of unpredictability can be extremely unsettling and discourages people from making plans for holidays or long-distance travel in case infection strikes.

A UK government report in 2009 stated that cellulitis was among the top ten reasons for admission to hospital, accounting for over 45,000 emergency admissions per year. A significant proportion of those patients will have lymphoedema, but many may not yet have a diagnosis. Unfortunately, in most cases, staff haven't been trained to recognise that more than one attack of cellulitis in the same area always indicates underlying lymphoedema, as James discovered when he started suffering from recurrent infections:

James is fifty-five and works for an airline, which often means having to fly every two weeks or so. He had noticed that his ankles would swell on flights; the longer the flight the worse the swelling. Heat would also make the swelling worse. He knew it was fluid because he could make an indentation by pressing his thumb into his shin. The swelling did not hurt, and if he elevated his legs and wore flight socks on trips, he could just about control it. Then, around Christmas two years ago, he suddenly became unwell with high fever. He was shivery, had a headache and felt sick. He thought he had the flu but then realized his right leg was painful, bright red and hot to the touch. He immediately went to hospital where he was admitted with cellulitis.

(Continues...)

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Excerpted from Let's Talk Lymphoedema by Peter Mortimer, Gemma Levine. Copyright © 2017 Peter Mortimer. Excerpted by permission of Elliott and Thompson Limited.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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Table of Contents

Foreword ix

What Is the Purpose of this Book? xi

Preface xiii

Introduction Gemma Levine 1

1 Introducing the Lymph System 5

2 What Is Lymphoedema? 11

3 The Perils of Infection 17

4 What Causes Lymphoedema? 25

5 How Common Is Lymphoedema? 41

6 Awareness and Diagnosis 47

7 Standard Treatments 69

8 New and Alternative Treatments 101

9 Managing Obesity and Lymphoedema 115

10 Living with Lymphoedema 123

11 Children with Lymphoedema 145

12 Other Forms of Lymphoedema 159

13 Lymphoedema Worldwide 175

Conclusion: Hope 187

Appendix 1 Exercises 189

Appendix 2 Nutrition 197

Resources 200

Acknowledgements 201

Index 204