N.B.: In the following text, in order to simplify, the terms "lymphedema", "compression device", "contention" and "compression stocking" are always used in the singular, even if in some cases several locations may be affected by lymphedema in the same patient and that several compression garments may be necessary.

 

In case of diagnosed chronic lymphedema, your decongestant treatment should be individualized as much as possible, but certain treatment modalities are common to all patients and are essential to obtain a favorable evolution.

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Here is some information and advice that LymphoSuisse would like to pass on to you so that the treatment of your lymphedema takes place in the best conditions and that its evolution is as positive as possible.

   

After the lymphedema has been diagnosed by a doctor and confirmed by the angiologist and their recommendation of a decongestant treatment, you can look for a therapist specialized in Lymphology by consulting the therapists’ directory available on this site.

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In cases where specific functional rehabilitation has been recommended in parallel to the decongestant therapy for your lymphedema, referral to a physiotherapist or occupational therapist is more appropriate.

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During the first consultation, the therapist performs an assessment and a treatment plan is established.

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According to the treatment plan, you will need to make yourself available to begin the intensive decongestion phase, the first phase of the treatment. This phase consists of manual lymphatic drainage sessions associated with compression bandages. The frequency of the sessions during this intensive phase must be at least 3 sessions per week but it is important to know that the higher the rhythm of the sessions, the shorter the treatment phase with bandages will be. If the application of the bandages proves to be incompatible with your professional activity, a temporary absence from work during this period must be discussed with your doctor.

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During this treatment, you will also be taught simple exercises adapted to your situation. Active participation in the treatment and regular practice will help reduce your lymphedema.

When the lymphedema is reduced to the maximum, i.e. when the measurements during this decongestion phase no longer improve, the time has come to go to an orthopedic technician specialized in lymphology, with a medical prescription specifying the type of compression device desired, in order to take measurements to make a tailored (custom-made -> not standard) flat-knit sock, cuff, glove, etc.

 

The measurement session must be coordinated with the therapist because the continuation of the treatment with bandages is necessary while waiting for the compression device to be made. Once provided, this custom-made flat-knit elastic support will replace the bandages and will mark the beginning of the second phase of treatment, which is the stabilization and optimization phase. The rigorous wearing of the support should allow you to maintain the benefits obtained during the decongestion phase and in the long term, to further improve the quality of the invaded tissues and the volume of the lymphedema.

 

During this stabilization phase, the frequency of treatment sessions is reduced and adapted to your situation, in order to guarantee the control of the lymphedema. Manual lymphatic drainage is the basis of this second phase but, if necessary, a bandage applied at the end of the session - which you will remove the following day - can complete it.

 

This stabilization phase is designed for the long term. Self-management is essential.

In order to allow you to actively participate in the proper evolution of the lymphedema, the therapist will teach you self-drainage and self-bandaging techniques. Given the vast diversity of existing materials and the different modalities of application, the subject of self-bandaging must be discussed with your therapist in order to find the best compromise between efficiency in stabilizing or even improving the lymphedema and avoid too much restriction.

 

Your therapist will advise on the most appropriate physical activities that can be integrated into your daily life to acquire or maintain an active lifestyle and thus complete the self-management of your lymphedema.

 

He or she will also suggest you to repeat a short phase of intensive decongestion treatment combining manual lymphatic drainage and bandaging for a few days (usually 2-3 days) before each renewal of the compression device.

 

 

Support: How should you care for your support?

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Washing your elastic contention should be done regularly for hygienic reasons, but it also helps to maintain its effectiveness. Refer to the supplier's recommendations regarding washing temperatures and products and whether or not to use a tumble dryer.

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Tip: Use rubber gloves to put on and adjust your contention properly. They make it easier to do it and preserve your contention.

 

Clothing: Comfort first...

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• No clothing should exert pressure, prick or cut the skin.

• Prioritize clothing that does not cause excessive discomfort to breathing and movement. It is important that breathing and movement can take place without unnecessary strain. 

• Wear loose and comfortable clothing as often as possible.

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There are clothes adapted to lymphedema such as bras, underwear without elastics, sportswear or beachwear as well as large size clothing brands.

If you are concerned about breast prostheses, ask your ortho-prosthesist for advice.

 

Concerning your shoes 

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• Wear comfortable shoes with 2-3 cm high heels and contoured soles

• Avoid high heels or shoes without heels

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Adapted shoes can be custom-made by an orthopedic technician or bootmaker in case the market offer is not satisfactory (particular morphology or deformation of the foot, bandages, diabetic foot, etc.).

   

Which sports are best for lymphedema?

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Among the sports that are favorable are:​

• water aerobics

• swimming

• walking, Nordic walking

• cycling

• gentle gymnastics and Pilates in particular

• Qi Gong, traditional Chinese gymnastics, a science of breathing based on the knowledge and control of the breath which combines slow movements, breathing exercises and concentration

• Hypopressive gymnastics: ordered and rhythmic postural and respiratory exercises allowing the integration and memorization of proprioceptive, sensory or sensory messages associated with a particular postural situation. These exercises are performed in apnea at the end of exhalation. The objective is to obtain an abdominal hypopression by activating the abdominal muscles and the diaphragm

• Fitness (treadmill, rowing machine, bicycle, etc.).

 

It is recommended to wear your contention during sports activities (except water sports). It is also highly recommended to practice physical activity during the intensive decongestant treatment with compression bandages (first phase of the treatment).

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Tip for sports: do not remove your contention immediately after the effort, first return to calm. This is to avoid a possible slight swelling of the affected limb after the effort.

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Warning: it is advisable to consult your doctor before undertaking or resuming any physical activity. This becomes even more imperative if you have one or more diseases that are concomitant with your lymphedema. You must make sure that you have no contraindications to the activity you choose.

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How can you enjoy the summer heat or a vacation in the sun despite my lymphedema?

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• Wear a worn out compression stocking at the beach and avoid direct exposure to the sun

• At the pool or in the sea, submersing your limb or the affected area is beneficial (the water exerts pressure, acts as a restraint and, when moving, performs a light massage)

• Avoid water temperatures above 30 degrees Celsius and if you particularly enjoy these temperatures, avoid prolonged baths (maximum 20 minutes) and cool the lymphoedemic limb or affected area with a cool water shower for a few minutes at the end of the bath.

• Beware of infections! Always carry a disinfectant for wounds, scratches, bites, etc. In some cases, it is advisable to carry a package of antibiotics when you travel abroad. Discuss this with your doctor.

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What about winter and skiing?

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In most cases, ski boots can be adapted to your feet despite the presence of lymphedema and will allow you to ski while wearing your compression stockings.

 

Some sport stores use thermoforming to adapt the shell of the boots.

 

A compression stocking containing inserts may not be compatible with ski boots or lined boots, despite the possible adaptations. Do not hesitate to ask for a stocking without insert.

 

Be aware that wearing ski boots or boots helps to compress your extremities.

 

Tips for finding a specialized therapist, the questions to ask the therapist before starting treatment and the golden answers you should be looking for:

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• Do you have experience treating lymphedema?

• - Yes, I do and I take continuing education courses in lymphology regularly.

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• Are you in contact with an orthopedic technician to make a custom compression device?

• - Yes, I usually work with these professionals

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• Do you regularly make multi-layer bandages?

• - Yes, I do it quite regularly and I feel comfortable doing it.

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• What follow-up will you do after the intensive treatment to decongest my lymphedema?

• - I will continue the stabilization treatment, take regular measurements of the affected limb, and monitor the effectiveness of your compression device. We will establish together the frequency of the maintenance treatment and, if necessary, I will ask your doctor to obtain a new prescription for the continuation of your care.

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• What would you advise me to do if I have signs suggesting erysipelas?

• - I would advise you to seek urgent medical attention from your doctor or an emergency medical center and discuss your suspected erysipelas. I will have pointed out to you that the treatment of an erysipelas is antibiotic therapy.

• - After the clinical signs of erysipelas have disappeared, we will reassess your lymphedema and if it worsened, we will schedule a new short intensive decongestion phase in order to regain the volume prior to this infectious episode.

 

 

KEY QUESTIONS, what patients say

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What can I do.... to just feel good?

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• Wear your support every day. Even in the summer when it's hot!

• Strictly stabilize your weight, or even normalize it, with the help of professionals if necessary.

• Continue the stabilization treatment rigorously. The rhythm of the treatment is to be evaluated with the doctor and the therapist.

• Get moving! Alternate positions, elevate the affected limb(s) when possible.

• Practice a sport. The one that suits you best!

• Take care of your skin... every day. Preferably use PH-neutral products.

• End showers or baths with a jet of cool water on the area affected by lymphedema

• Accept your lymphedema as best as you can and take care of yourself by being an active patient involved in the therapy, in a way like a co-caregiver.

• - Practice self lymphatic drainage every day in a few steps

• - Practice self-bandaging

• - Remember to breathe correctly

• - To find and do what makes you feel good and happy at the same time

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And to encourage yourself and exchange with other people suffering from lymphedema, why not join an association... like LymphoSuisse?

 

Dear Patient,

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LymphoSuisse remains at your disposal for any further information you may require.