Dear lymphoedema patients,

Lymphoedema in my legs started about 3 years ago, gradually, without causing any particular problems. Just slight swelling in both ankles, worsening over the summer months due to heat and lack of knowledge of the forthcoming problem.

Thanks to an extraordinary team of doctors and therapists, together with research through books and internet, I have learnt to live with the problem: the illness is now under control and my condition has improved visibly. It is fundamental that you co-operate with your physician and physiotherapist to obtain good results. Total collaboration will help towards overcoming the huge and inevitable psychological upsets because you are affected with lymphoedema Visible improvements CAN be obtained when combined with the right treatment, exercises, garments and bandages. Remember with the correct care and attention, you can become a better and more positive person – this way, it will not rule your life!

These simple and non-medical notes will help all those new lymphoedema sufferers to understand and combat their chronic illness better and the importance of living with it, serenely.

First of all there are two types of lymphoedema: primary and secondary

1) primary lymphoedema is due to a genetic abnormality which causes insufficient lymphatic drainage.

2) Secondary lymphoedema occurs for many reasons: usually surgery after cancer, fractures, chemiotherapy and radiotherapy, or other reasons.

Normal drainage is therefore limited because lymph nodes have been either blocked, or severely damaged, or worse still, removed.

Once lymphoedema is confirmed, your doctor, (after having first carried out either a duplex investigation or a lymph-scintigraphy) will advise you on the best method of treatment in the form of lymphatic drainage by manual massage. He will prescribe the appropriate garments to wear, and whether elastic compression bandaging is necessary or not. Medication may also be prescribed, as well as a suitable diet (but this is an individual concern for every single patient).

Most public health or private organizations can offer a course of massages and/or bandaging. At this point I would like to point out the importance of therapists A good trained therapist MUST show you how to exercise at home, and at the same time, demonstrate which lymph nodes need to be stimulated (through gentle massage) so excess lymph can be drained up towards your heart. He/she should teach you how to bandage too. If you do not receive these instructions, look for another therapist!

Some doctors suggest the use of leg or arm pumps, but unless your lymph “stations” are opened to receive the lymph, these pumps can do more damage than good. If you chose to use these pumps, never exceed the advised pressure, or time limit per session.

Living with lymphoedema

Garments:

Buy only top quality ones, but first try them on in the shop before purchasing them.

They must be comfortable It may take a little while to get used to wearing them, but soon these will become “second nature” to you. As soon as your garments become loose, change them. Either your limb has reduced, or the garments have lost their original elasticity. Depending on your problem, I recommend open-toed garments in the summer. Thigh-high garments can be a blessing in hot months and can be kept in place by the use of a roll-on glue (this washes off under the shower and won’t damage the garment either.) Garment glue is available in shops that sell orthopaedic garments.

Clothing:

If you are wearing garments, or bandaging, you will probably need roomy clothing, this also applies to shoes too. If your clothing is tight, you can’t flex your limbs and this can be frustrating, and it’s bad for your circulation as well.

Home:

1) Raise the end of your bed, either by placing cushions under the mattress or blocks under the bed legs. For good drainage, your feet should be about 8-10 cm. higher than your heart.

2) Buy a small collapsable stool (the light-weight kind that is used for camping) to prop up your feet. This can be taken with you when you anticipate sitting for long periods. (I’m a teacher and I use it under the desk – I’ve even taken it to the cinema: some people have crutches, I have a stool!)

3) Use coumarin powder on the problem limb and from time to time apply a moisterizer to your legs or arms. Skin condition will change due to sluggish circulation, this is particularly the case for feet and hands.

4).Hair removal. Seriously consider using hair-remover creams. Waxing can cause considerable stress to upper-surface lymph nodes, particularly in the groin or armpits. Do not use safety razors either. A nick of the skin can result in infection.

5) Mosquito spray must be kept handy when outdoors whether you are wearing a garment or not. A lymphoedematous limb is very prone to being bitten.

6). Antibiotics. A good all-round antibiotic (penicillin base) is indispensable. This must be taken in the case of infection.

Travelling:

When I travel by plane, I usually leave bandaged, otherwise I wear an extra garment (one on top of the other) as the compression needs to be greater. Place your feet on a small bag, or take your little stool with you.

If your are travelling by car, get out and take a short walk about every hour or so. (this applies to moving about on plane journeys too). Always keep your knees or elbows slightly flexed and put some cushions under your limbs to help the circulation Avoid direct hot sun on your limbs in the car or train – your limbs will remain cool by lightly placed newspapers on top of them. Never put a towel or coat over your limbs, because this will create an oven effect.

Sun-bathing:

A certain amount of good sense must be used here. If you want to sit in the sun, keep your limbs propped up (I usually sit with my feet up on the back of a chair, or lie the “wrong-way-round” on a beach bed) You must wet your limbs constantly Swimming or walking is an excellent natural massage Arms and legs can be swished along in the water – muscles need to be active and this does wonders for pumping.

The Secret to Happiness:

This is perhaps the most important asset to be accomplished. You are responsible for your physical well-being. Follow all the “rules of the game” because only you can really control your condition. Stress and depression can worsen your affected limb, so don’t sit back and feel sorry for yourself; life doesn’t stop just because you have lymphoedema. Don’t show your suffering in your face. If you are depressed or are having work problems or feel that your partner doesn’t support or understand your condition, contact a friend or another patient and have a good laugh, or even a cry, - letting-go is miraculous. If you are positive you will also help the people living around you (sometimes they feel inadequate as regards your illness) and everyone will benefit too.

Learn to say no. Some strenuous sports or activities may have to be slowed down or eliminated entirely. If time, or work allows you to have a rest, then do so, it’s the best medicine for lymphoedema.

GOOD LUCK !

Anni Gashler