What does Lymphoedema feel like?

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3 What is Lymphoedema Lymphoedema is a condition which may affect anyone, at any time. However, it occurs with greater frequency in females. It is often distressing, can be debilitating, and is often also painful, showing itself as swelling of the limbs and body. The most common form of lymphoedema is in a limb, but it can affect any part of the body or internal organs. It can occur at any time, once the lymphatics are damaged. Sometimes, it can start immediately and lasts for life; the swelling may occur for a while then disappear, and may or may not re-occur; or it may appear years after the event in which the lymphatics are damaged, and can be triggered by a seemingly trivial event, such as sunburn, carrying heavy weights or a long flight. Primary Lymphoedema is usually determined from birth and is often due to the under-development of the lymphatic system - usually too few lymphatics, but there may also be cases where the lymph vessels be adequate in number, but are very dilated and do not pump properly. It can develop at any stage of life, but is most likely to occur at adolescence. Secondary Lymphoedema occurs where the lymphatic system becomes impaired following surgery and/or radiotherapy (as in cancer treatment) or as a result of infection, severe injury, burns or trauma. It may worsen quite rapidly.

4 What does Lymphoedema feel like? Unfortunately, there is a general lack of medical knowledge and expertise in giving an early diagnosis and correct referral for treatment. Lymphoedema may often have an immense impact on a person's quality of life. Someone with Lymphoedema will usually feel any of the following symptoms: Feeling of tightness and heaviness in the limb, which can result in the difficulty of movement?! A gradual thickening of the skin on the affected limb. Lymph may also leak through the skin as the condition worsens.! Deep aching pains or shooting pains up the limb; aching buttocks (leg lymphoedema) or back of the shoulder (arm lymphoedema).! Pins and needles in the limb.! A feeling of tightness or tenderness in the elbow or back of the knee;! Pains in the joints (e.g. elbow, knee and ankle), similar to arthritis, and may be diagnosed as this.! Tenderness in the groin of the affected leg.! "Blown-up" abdomen if a leg is affected or in "lymphoedema-allover".! The limb or affected areas are warmer than other parts - if it becomes red, this suggests an infection which must be treated immediately.! Intolerance to heat, especially in the affected limb (climatic, saunas, baths).! Clothes or shoes do not fit properly.! Fatigue often sets in. A person with the condition may have to adapt to an altered or more limited daily lifestyle, sometimes with a reduced working capability. Daily selfmanagement of lymphoedema also requires certain self-discipline. Very often, the onset of swelling and the growing realisation that there is no cure can be hugely destabilising. Many sufferers often feel isolated, partly due to the lack of medical recognition of their condition, and partly due to having few links with others also suffering from Lymphoedema. It is often here that membership of a support group can relieve some of these feelings of isolation.

5 Why does Lymphoedema occur? Lymphoedema occurs when the lymphatic system is impaired. The lymphatic system is necessary to life function and made up of complex structures of vessels and nodes. It is similar to the blood system and has just as many vessels, but they contain lymph that is clear, and so cannot be seen. Oxygen, nutrients and water feed all body tissue but as blood does not circulate to every part of the body, a blood filtrate called the interstitial fluid provides the necessary nourishment to each cell. Bodily wastes are extracted from the tissues and, along with excess fluid, all drains back into the circulatory system. The lymphatic system is the "overflow" collecting some 10% of the waste that is filtered through the lymph nodes (lymph glands) to remove any foreign matter and to start any necessary immune reactions before finally draining in to the circulatory system. The lymph drainage process occurs by changes in the pressure of the interstitial fluid through the action of breathing and general muscle movement. Any permanent failure or damage to the lymphatic system causes a damming up of substances and fluid in the tissues - this is Lymphoedema.

6 How Lymphoedema is treated What Can Be Done To Help? Firstly, it is essential that Lymphoedema is correctly diagnosed and you are assessed. Generally, there are four components of care that will be recommended for people with mild to moderate swelling of their limbs: Skin Care to keep the skin and tissues in good condition and to prevent/reduce the risk of infection. For more information see the LSN 'Skin Care' fact sheet. External Support/Compression in the form of elastic compression garments to help prevent the swelling from building up in the limb. A programme of exercise and movement to try and maximise lymph drainage without over exertion (this would cause the swelling to worsen). Simple Lymphatic Drainage (SLD) - a gentle massage technique that is based on the principles of Manual Lymphatic Drainage (MLD) (see below). It involves the use of simple hand movements to try and move the swelling out of the affected area. It is designed to be carried out by patients themselves - or their relatives or carers. For people with a more severe swelling, additional treatments may be recommended such a the Manual Lymphatic Drainage massage. Manual Lymphatic Drainage (MLD) - a specialised form of massage carried out by a trained therapist to move the skin in specific directions based on the underlying lymphatic system. With appropriate information and the help and support of a lymphoedema specialist, there is so quite a lot you can do to help yourself which can help you control this condition. There is also help with the use of the following; Compression Garments Compression garments are elastic knit two-way stretch sleeves or stockings that aid in controlling swelling by providing additional support for the lymphatic system. These garments are worn while the wearer is awake and active.

7 Compression Stockings Compression stockings, also known as compression hose, are available in a wide range of styles, sizes, and compression strengths. The stocking shown here is a knee-high; however the compression hose commonly used for treating lymphoedema extends to the hip. When both legs are involved, a panty-hose style may be used. Introduction Compression garments are specialised elastic knit two-way stretch sleeves or stockings that can be worn under clothing throughout the day, including while exercising. Compression garments are not worn while sleeping because they provide too much compression when the body is inactive while at rest. Also, if the garment moves out of place during sleep, it can cause constriction that damages the circulation. Compression garments do not provide protection against sunburn and, unless an outer layer of clothing is worn, a high SPF sunscreen should be applied under the compression garment. Fitting Compression Garments In the treatment of lymphoedema a garment that does not fit properly, or is of the wrong compression, can do more harm than good! For this reason it is important that your lymphoedema physiotherapist, or an appropriately trained fitter, must take the necessary measurements and make the correct recommendations.

8 Putting on Compression Garments At first putting on a compression garment may seem difficult; however, with practice the process goes smoothly. In addition to the suggestions provide here, most garment manufacturers provide helpful guidelines and some sell donning aids to make this process easier. # A compression garment is easier to put on early in the day before swelling occurs. # A thin layer of talcum powder over your carefully dried skin will help the garment slide more easily. # Applying a low ph moisturizer to the affected limb is an important part of skin care; however, freshly applied moisturizer makes putting the garment on more difficult. Instead of moisturizing in the morning just before putting on the garment, apply moisturizer in the evening after the garment has been removed. # Do not wear rings or jewellery that can snag and damage your garment. # Wearing rubber gloves while putting on the garment provides a better grip on the fabric and prevents fingernails from damaging the fabric. # When the garment is in place it should fit smoothly without wrinkles or bunched areas that can irritate the tissues. Care of Compression Garments Ideally each patient should have two compression garments: one to wear and one to be drying. These garments should be hand-laundered following the manufacturer s instructions. The specialized liquid soaps sold by the garment manufacturers are designed to thoroughly clean the garment and to enhance the durability of the garment s elasticity. The garment should be placed flat to dry.

9 How to Breathe This is a most effective way to breathe in order to cleanse your system. You should breathe in through the nose for one count, hold for four counts, and exhale through the mouth for two counts. In other words, if you inhaled for five seconds, you'd hold for twenty, and exhale for ten. The numbers can change as long as the ratio stays the same. Why exhale for twice as long as you inhale? That's when you're eliminating toxins via your lymphatic system, and holding for four times as long allows you to fully oxygenate the blood and activate your lymph system. You should breathe like this in three sessions of at least ten breaths per session. Try and do this when getting up, after lunch and when you go to bed.

10 Article from The British Medical Journal on Lymphoedema on what to expect, and about the ongoing problems with Lymphoedema Physical Symptoms Primary Signs Secondary Signs Lymph is a watery, slightly yellow liquid found in the lymphatic vessels of one's body. These vessels act as a drainage system for the body. Just as blood circulates throughout one's body, so does the lymph. Lymphatic vessels range in size from very large to microscopic and are found in every organ and tissue of the body. These lymphatic vessels flow alongside ones blood vessels. However, unlike blood, lymph does not flow because of a heart pump. Lymph is slowly, coaxed by the movement of the body's muscles until it empties back into the blood vessels just above the heart.

11 The actual lymph fluid is formed when liquid plasma and protein from the blood ooze out of their capillaries and are then picked up by the, almost transparent, lymph capillaries (vessels). However, it is not only excess fluid from the blood that is picked up, but also, nutrients, hormones, waste products of the cells, bacteria cancer cells, and cellular debris. Also present within the lymph are lymphocytes, which disable harmful foreign invaders. During circulation, lymph passes through countless lymph nodes stationed throughout its pathways. Each lymph node acts as a filter helping to destroy micro-organisms and cellular debris. Besides helping to maintain the body s fluid balance and defend the body against disease, the lymph absorbs digested fats from the intestines and transports them to the blood. Physical Symptoms traditionally associated with toxins in the lymph system. When the lymphatic system becomes overly toxic, it leaves a great deal of unprocessed waste throughout one s body. This leads to a weak immune system, frequent colds, and an overall cloudy & weighted feeling throughout the body. Primary Signs - Frequent Colds & Infections - Tiredness - Lethargic Body - Tender Lymph Nodes

12 Secondary Signs - Low immune response - Poor muscle tone - Spontaneous bruising - Haemorrhoids - Cellulite formation - Pale Skin - Extremely thin - Problems with sense of taste - Lip problems - Heaviness & weakness of extremities - Yeast Infections - Eating disorders - Food intolerance Emotional Symptoms traditionally associated with toxins in the lymph system. The lymphatic system relies on muscle contractions to move lymph throughout its vessels. Without muscles the lymph would not flow through its own vessels. However, when the lymph becomes toxic there is a continual need for movement to break up the toxins in the body. This is manifested emotionally as a feeling of continual agitation, the need to move, to break up the toxic lymph. It also creates cloudy thoughts because toxins are not being processed. Primary Signs - Agitation - Over Stressed - Muddy Thinking - Difficult to Relax or Sleep Secondary Signs - Worry - Failing Memory - Brooding - Self Pity - Obsessive compulsive disorders - Stubbornness

13 Coping Emotionally with Lymphoedema Lymphoedema isn t Just Physical Being diagnosed with lymphoedema is a life-altering event. Suddenly your body doesn t function like it did before. It doesn t look or feel the same. Your self-image and interactions with others may change. You can t do things like you used to. Activities you took for granted may now be difficult or even dangerous. Lymphoedema has moved into your life uninvited and unwanted and it s not going to leave. Naturally, you have emotional reactions to this state of affairs. At times you may find yourself blind sided by emotional reactions. You can even feel as if you ve been dropped into the middle of a minefield without a map. What to Expect You want to know what to expect as a result of having lymphoedema. In particular, you want to know when what you re feeling is a normal and predictable emotional reaction. This knowledge is reassuring and comforting because it helps you realize that: Normal Reactions When you are diagnosed with lymphoedema, you may feel confused, sad, angry, and scared. You may feel trapped, helpless, hopeless, or betrayed. You may grapple with questions of why this happened to you. It may stir up old emotions from the past and it certainly can make you feel stressed in the present. These are normal reactions. The bad news is that these common, normal reactions are distressing. They can strain your relations with other people or make it harder for you to do what is needed to manage your lymphoedema.

14 The good news is that the more you know about what to expect, the less you will feel overwhelmed by your emotions. You can cope with these normal reactions. # You are not crazy. # You are not weak. # You don t have to criticize yourself for having normal emotional responses. # You don t have to beat yourself up about feeling bad. # You don t have to worry on top of feeling distressed. Genital Lymphoedema Lymphoedema of the genital region is relatively uncommon, but is extremely uncomfortable and distressing for the patients who suffer with this condition. It can affect both men and women alike. Around ten percent of people who develop leg swelling will have associated genital swelling, but some patients can have genital swelling alone. In some circumstances, genital lymphoedema can occur acutely due to trauma or cellulitis and may be able to resolve completely by itself. Far more usual however, is the chronic genital lymphoedema, which is unfortunately irreversible, but can be controlled and reduced through appropriate lymphoedema management. The main cause of genital lymphoedema is either due to primary or secondary lymphoedema. Primary lymphoedema affecting only the genitals is rare. It can be noticed from birth or during the teens, and as the affected individual grows, the involved lymphatic system becomes ever more under pressure to drain the tissue fluid and the swelling becomes far more obvious. The main reasons for primary genital lymphoedema are that the lymph vessels are absent or reduced in number or simply don't work as well as they should i.e. functional failure. It has also been thought that primary lymphoedema patients, who are obese, have an increased risk of genital swelling due to greater pressure on the groin from the enlarged abdomen.

15 Secondary lymphoedema more commonly affects the genital region than primary lymphoedema. It has been reported that up to 70% of patients treated for carcinoma to the vulva will have lower body swelling. Radiotherapy to the lymph nodes in the groin or abdominal region can also cause genital lymphoedema. The incidence also increases if there has been surgery and radiotherapy plus episodes of cellulitis. In females, the inner and outer lips of the vagina (labia) can become extremely swollen this creates problems for sexual activity and urination. In both genders, the pubic area on the lower abdomen alone can become swollen, with associated skin changes. Pain is a problem for some patients, who describe a dragging, heavy, bursting sensation or an ache around the genital region. This is usually eased when the area is decongested or lifted by support or cycling shorts. Skin changes are readily seen in genital lymphoedema. Skin Care and meticulous hygiene of the genitals is imperative. Daily bathing with an antibacterial soap and drying the area afterwards is very important to reduce the likelihood of infections. Regular moisturising with an aqueous cream will deter any areas of dry, flaky skin and keep the area soft. As this area is prone to fungal infections and cellulitis, regular inspection will enable the patient to detect any early signs of inflammation. If an infection occurs, prompt anti- fungal or antibiotic treatment is required. If a patient suffers from recurring cellulitis episodes, then long term antibiotics may be required. Exercise in any form is important, as it keeps all the joints and muscles working adequately. If there are no areas of broken skin, then an excellent form of exercise is swimming or walking in the water. The genital area will have some support from the swimming attire and the pressure from the water assists too. Other forms of aerobic exercise that are also useful are cycling and walking, but it is important that compression garments and padding are worn when cycling.

16 Lymph Drainage is an important part of lymphoedema management. Manual Lymphatic Drainage (MLD) and Simple Lymphatic Drainage (SLD) are massage techniques designed to move fluid away from the swollen genital region, to parts that are not affected, to drain freely. The massage itself is very light and is not painful. It is also very useful in softening hard tissue. MLD is a technique that is carried out by trained therapists. SLD is a simplified form of MLD and can be taught to the patient or carer to do themselves. For further information regarding genital swelling, ask your lymphoedema specialist or medical practitioner. First Aid and Lymphoedema Introduction The minor cuts, bumps, and scratches that are part of everyday life are not necessarily a medical crisis for those with, or at risk of developing, lymphoedema. However, these minor injuries require prompt treatment with appropriate first aid procedures. After you have treated the injury, continue to check frequently for indication of infection throughout the healing stage. If any of the signs or symptoms of infection develop, seek medical treatment immediately. Minor Cuts or Scratches Bleeding helps to clean out wounds, and most small cuts or scrapes will stop bleeding in a short time. If the bleeding does not stop in a timely manner, seek medical care. Never apply hydrogen peroxide or iodine solution to an open wound. because these substances are toxic to the cells of a wound that is healing. Instead carefully clean the wound with mild antibacterial soap and water or with the solution recommended by your doctor. Apply an over-the-counter topical antibiotic cream.

17 (Note: Some doctors do not recommend using antibiotic cream for this purpose. It is important to get guidelines from your physician before you take action.) Place a sterile bandage over the wound. A band-aid usually serves nicely for this purpose. For very sensitive skin, use micropore. Bruises Do not place ice directly over the injured area. If the bruise is on, or near, lymphoedema-affected limbs examine the injured area carefully to determine that it is only a bruise with no break in the skin. If the skin is broken, treat this injury as a cut or scratch. If the skin is not broken, reduce swelling and minimize discoloration, by immediately placing a cold pack on the injury. Keep this in place for no longer than 20 minutes at a time. The standard recommendation for treating bruises includes alternating ice and heat for the next 48 hours; however, since heat is not recommended on lymphoedema-affected tissues, this step should be modified to alternate cold with mild to moderate warmth. Itchy Rashes Don t scratch is the first rule of dealing with an itchy rash, such as poison ivy. If the itching is severe, seek medical help. If blisters are present, do not break them. Instead treat the rash by cleaning the area and gently applying an antibiotic cream. Watch for trouble! The irritants that are producing the rash may cause increased swelling in the affected area and there is always the possibility of an infection.

18 Insect Bites or Stings When an insect bites, it injects a toxin into the skin and these toxins cause the resulting itching. The reaction in lymphoedema affected tissues to insect bites can potentially be severe. In response to the bite, there may be a temporary increase in the swelling of the affected limb. Also, it may take lymphoedema-affected tissues longer than normal tissues to clear this substance from the body. If you have multiple bites on an affected limb, seek medical advice immediately. Don t scratch!! A cool wet cloth or cold pack will ease the itching and swelling. If the itching is severe, seek medical help. As long as there is no infection present, it should be safe to perform selfmassage to help the body clear toxins from this area. Burns Do not place oil, ice, or ice water on burns is the primary rule of treating burns. Beyond that, burns are treated according to their degree of severity and the amount of body area that has been burned. Extra caution should be taken when dealing with a burn on lymphoedema-affected tissues. First degree - burns have no blisters and there are no breaks in the skin. This type of burn is treated by cooling the burned area by applying a cold, wet cloth for 20 minutes and then removing it for 20 minutes. Repeat this until the area is pain-free. Apply a low ph moisturizer, or an antibiotic cream, over the burn to prevent the burned tissues from drying out. Provide additional protection over the affected area by covering it lightly with a dry gauze bandage.

19 Second degree - burns have blisters and superficial damage to the outer layer of skin. As long as the burn does not cover a large area, and the blisters do not break, it can be treated in the same way as a first degree burn. However, it is important to watch closely for any indication of breaking blisters and/or infection because these require prompt medical treatment. Third degree - burns causes blistering and damages the deeper layers of the skin. This type of burn, particularly on lymphoedema-affected tissues, requires immediate medical treatment. Hot Bath s, Saunas, Steam Rooms, & Lymphoedema The use of hot baths and saunas carries a risk of aggravating and increasing the risk of lymphoedema in, at risk patients. Introduction Exposure to extreme heat is not recommended for those with lymphoedema. For those at risk of developing lymphoedema, exposure to extreme heat increases the risk of increasing the onset of this condition. For this reason, there are some activities that should be avoided or at least approached very cautiously. Avoid the Steam Room and Sauna Steam rooms and saunas are designed to raise your core body temperature and to make you to sweat. This level of heat can increase the swelling of lymphedema and is best avoided.

20 Hot Bath Caution Soaking in a hot bath also raises your body temperature and has the potential of increasing lymphoedema swelling. For these reasons, the following precautions are recommended. If the lower limbs and/or trunk are involved, it is best to forego soaking in a hot Bath. Bikini Waxing and Hair Removal Introduction Many Lymphoedema therapists recommend that women with leg or genital lymphoedema do not use bikini or leg waxing. This article answers the question, Why not? What is Bikini Waxing? A bikini wax is performed at a salon, spa, or other personal-services business. Here a female technician applies warm wax to a woman's pubic and groin area and then places cloth strips over the wax. The warm wax causes the hair in this area to adhere to the cloth strips. After the wax cool and hardens the strips of material, and the attached hair, are removed by pulling the fabric strips off the skin. Leg waxing is a similar process that is performed on the legs to remove unwanted hair.

21 Why Waxing is NOT Recommended If these tissues are affected by lymphoedema there are several important reasons why bikini and/or leg waxing are not recommended. The wax must be warm to melt. Placing heat on lymphoedema affected tissues is not recommended. Bikini wax is performed in a commercial setting where it is impossible to be certain about the sanitary standards. The process of pulling away the cloth to remove the hair can damage the skin. Skin affected by lymphoedema is very sensitive and needs to be treated gently with appropriate cleansing and lotions. Waxing is not a gentle treatment. The wax gets into the hair follicle and pulls the hair from the root. This potentially opens a break in the skin that could be an invitation to infection. This procedure does not produce permanent hair removal and periodically must be performed again. Depilatory A depilatory is a chemical used to remove unwanted hair. Since skin affected by lymphoedema is fragile, there is always the danger that this may irritate or damage the skin. Electrolysis Electrolysis is the use of electrical current to destroy unwanted hair follicles. With any procedure of this sort that is performed in a commercial setting, there is always the danger of infection. Also, because skin affected by lymphoedema is sensitive, there is always the danger of irritating or damaging the skin.

22 What is the Answer? The most commonly recommended hair removal procedure is to shave very carefully with a lady shave or your own electric razor that is properly maintained. This includes keeping it clean, using it only for these areas, and replacing the razor heads as needed. What is Cellulitis People with Lymphoedema are susceptible to infections. The lymphatic system is impaired and frequently does not function adequately to fight infection. One of the commonest and most debilitating infections is cellulitis, otherwise known as acute inflammatory episodes. Attacks frequently associated with a constitution upset e.g. flu like symptoms, high temperature, headaches, vomiting, and shivering. Admission to hospital may be required. How can the patient recognise the infection? The patient feels unwell as if flu is starting. The swollen area develops a rash or becomes red, hot and tender to the touch. Swelling may dramatically increase and pain may occur in the groin. Treatment of Cellulitis Treatment of cellulitis is very important, not only because the sufferer may become very ill but because lymph drainage routes risk being damaged further, swelling may worsen and permanent skin changes e.g. thickening may result.

23 Management of patients at risk 1) All patients should be warned about cellulitis and how it might affect them 2) Possible skin factors such as skin abrasions, athletes foot or dermatitis Should, be treated promptly with anti-fungals/antiseptics as appropriate. 3) The sooner an attack is treated with antibiotics the quicker the resolution and the fewer after effects. Treatment of an attack 1) The patient must consult a doctor immediately. 2) Those patients familiar with attacks and who have appropriate oral antibiotics to hand and should commence the course immediately. 3) All compression garments should be removed and other forms of lymphoedema treatments such as Manual Lymphatic Drainage therapy and exercise must be suspended. 4) Rest is necessary with the affected limb elevated in a comfortable position to heart level. 5) Plenty of water should be drunk 6) Pain killers e.g paracetamol can be taken as necessary

24 How the risk of infection can be reduced 1) Avoid injuries, burns and injections in the limb 2) Keep the skin well moisturised and in good condition. 3) Treat cuts in the skin immediately with antiseptics and consult a doctor if dermatitis, athlete s foot or warts occur. 4) Use a chiropodist for regular foot and toenail care. Compression Garments They are elastic stockings, which are worn on a swollen limb. They give support and control oedema. Usually they are worn throughout the day but removed at night unless otherwise indicated by your nurse. It is easier to bathe, then moisturise the skin at night after removing the garment. Caution ANY change in the colour of your toes or any tingling, numbness or pain in your leg, remove the garment immediately ad contact your doctor or lymphoedema nurse for advice. If you have any queries, please feel free to contact me at VACO vacouk@yahoo.com or call me on and I will be happy to help you in any way I can.

25 Legal disclaimer We do not encourage you to self-diagnose your symptoms and would encourage you to work with your doctor (GP or specialist) to find the best treatment for you. All content within this booklet is provided for general information only, and should not be treated as a substitute for the medical advice of your own doctor or any other health care professional. Always consult your own GP if you're in any way concerned about your health.

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