00  BC Lymphedema Association

Stages of Lymphedema

Whether Primary or Secondary, lymphedema usually progresses through a series of stages from mild to severe. That’s why it’s important to get help right away, even if your initial symptoms don’t seem like a big deal or they come and go. One episode of numbness, tingling, or swelling will very often lead to more. If you don’t act on early symptoms, the buildup of fluid can cause permanent damage to the tissues under the skin.

There are many methods for staging, which are frequently being upgraded. Currently, the Canadian Lymphedema Framework (CLF) is using a system outlined by the International Society of Lympholog (ISL) the stages are:

Stage 0 (refers to subclinical or latent condition): There may be no changes visible to the naked eye despite impaired lymph transport. Symptoms such as mild tingling, unusual tiredness, or slight heaviness, may be palpable or “felt” by the patient (sometimes, by the trained therapist). At this stage the body’s homeostasis is trying hard to cope with the change that has occurred due to organic and/or functional alterations to the lymphatic system. The changes can come from a variety of causes (some examples: surgery, trauma, radiation). Due to subtle alterations in lymph system transport capacity, the potential exists for lymphedema to occur at any time from a few months to several years after the alteration occurred. Then, visible symptoms develop, which are general descriptions of the following stages: 

Stage 1 (early or mild): Swelling occurs where the lymph transport capacity is altered. The swelling could be in any affected area, such as limbs, hand/feet, trunk, breast, or other areas, as the protein-rich fluid starts to accumulate. The symptoms are visible and palpable. When the skin is pressed, a temporary small dent (or pit) forms; this may be referred to as “pitting edema.” Such early-stage lymphedema is considered reversible, as the swelling will disappear with elevation or bed rest. While the swelling resolves, however lymphedema is still present.

Stage 2 (moderate): Elevating the arm or other area does not resolve the swelling. The swelling tends to increase. Pressing on the skin may or may not leave a pit (non-pitting edema). Some changes to the tissue under the skin start happening, such as accumulation of fat and/or fibrosis which is a hardening, or thickening of the tissue. The more fibrosis is present, the harder it is to produce pitting. Stage 2 lymphedema can be managed with treatment. However, at this stage, the tissue changes are difficult to completely reverse.

Stage 3 (severe): This is the most advanced stage, the affected limb or area of the body tend to become very large and/or misshapen with the amount of swelling present, Fibrosis is hard and difficult to soften. If Stage 3 is present in distal extremities, the skin thickens and may even shed the outer layer. It may take on a leathery, wrinkled appearance, and may have small/tiny projections like little warts or bumps. Stage 3 may also be managed with treatment

It should be noted that it is possible to have mild, moderate and severe of any of the stages. Once you have mild lymphedema, you are at higher risk for moderate-to-severe lymphedema than someone who has never had any symptoms. This risk persists even if your symptoms reduce with treatment.

Treatment of Lymphedema should be done by a Health Care Professional (HCP) who has been trained in the care of lymphedema/lipedema/lymphatic pathologies. Treatment may be with Combined Decongestive Therapy (CDT), CDT consists of Manual Lymph Drainage, Skin Care, Compression and Exercise. Or, it may be possible to use compression alone, under the supervision of a trained HCP.

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