Today isn’t March 6, Lymphedema Awareness Day, but clearing up misinformation in a newspaper about swelling in legs or arms. Article says no one knows what causes it.
Thirteen years ago, my mail carrier, Nancy rang my home door bell in New Jersey. She asked if she could discuss a health concern with me.
Her 30-year struggle with swelling in her legs and arms, known as secondary lymphedema, began after she had lymph nodes removed due to a malignant melanoma.
Lymphedema is an accumulation of lymphatic fluid in tissue that causes swelling, most often in the upper or lower extremities of the body.
Despite walking miles daily to deliver mail she noticed the swelling worsened. Her symptoms were misdiagnosed for many years as edema. She never connected it to the lymph node removal she had. She’s not alone. Many people do not realize swelling symptoms can creep up years later.
She did extensive research about her symptoms and finally learned about lymphedema and began getting appropriate treatment. It was 2005 and we decided if Nancy was misdiagnosed, then many others may be going through the same thing.
Our mission to raise awareness began. Both physicians and patients need to know about it, as misdiagnosis is common. Oftentimes, doctors either dismiss symptoms or say it’s due to water retention, weight gain or edema.
Lymphedema develops when lymph nodes are missing, impaired or removed. Twenty percent of lymphedema sufferers are women.
Women with breast cancer who notice swelling need to be aware of lymphedema.
For breast cancer patients, this chronic condition may happen months or decades later. It can also strike right after surgery. Research indicates over 41 percent of breast cancer patients had lymphedema in arms within 10 years of surgery.
Nancy also asked for my help in designating a Lymphedema Awareness Day. Local, city and state representatives listened. The resolution, sponsored by Assemblywoman Linda Stender, passed. March 6 is now designated annually as Lymphedema Awareness Day.
She was treated by a lymphedema therapist at JFK Johnson Rehabilitative Institute in Edison, NJ.
Nancy received a Lymphedema Patient Award for her courage and efforts. The National Lymphedema Network was an invaluable resource during this time.
“It makes all the difference in the world when you know there’s an organization that actively supports keeping patients educated and informed.” ~Nancy P.
For more information visit http://www.lymphnet.org
Causes ARE known and the following can help you recognize symptoms:
12 Common Causes of Lymphedema
by Rachel Despres
Lymphedema is a condition where the extremities become swollen as a result of damage to the body’s lymphatic system—particularly the lymph nodes. A part of the immune system, the lymphatic system is “a network of vessels that course throughout the body to collect excess fluid as well as waste products,” defines eMedicineHealth.com.Because these excess fluids and waste products are filtered through the lymph nodes, if they become damaged, it can lead to a build up in various parts of the body, resulting in swelling. There are a variety of factors that can cause this damage, which we’ll discuss below, along with the most common symptoms of lymphedema to be mindful of.
Causes of Primary Lymphedema
1. Congenital Lymphedema
Primary lymphedema is rare, and happens as a result of genetic mutations that cause the lymph vessels to develop improperly, “undermining its ability to drain fluid properly,” says MedicalNewsToday.com.
Congenital lymphedema is one such cause of primary lymphedema, and is present at birth. It is “more common in females, and accounts for about 20% of all cases of primary lymphedema,” says MedicineNet.com. The source adds that there is a subtype of congenital lymphedema as well, termed Milroy disease, where the condition occurs as a result of genetic inheritance.
2. Lymphedema Praecox (Meige Disease)
The most common cause of primary lymphedema is lymphedema praecox—also known as Meige disease—and is defined as “lymphedema that becomes apparent after birth and before age 35 years and symptoms most often develop during puberty,” says MedicineNet.com.
The source also indicates that females are four times more likely to develop it than males. And while it most commonly becomes evident during puberty, it’s possible that it may also (or only) occur during pregnancy.
3. Lymphedema Tarda (Late-Onset Lymphedema)
An even rarer cause of primary lymphedema is lymphedema tarda, or late-onset lymphedema. The type gets its name because of when it occurs in a person’s life, typically after the age of 35.
Whereas both congenital lymphedema and lymphedema praecox primarily affects females, the National Lymphedema Network indicates that lymphedema tarda “usually affects both lower extremities in men and women.”
Causes of Secondary Lymphedema
Secondary lymphedema is far more common than primary lymphedema, and occurs “when a normally-functioning lymphatic system is blocked or damaged,” says MedicineNet.com. A variety of factors can cause a blockage or damage, including surgery.
For example, the Mayo Clinic says, “lymph nodes may be injured in surgery that involves blood vessels in your limbs.” Or, in the case of surgery to treat breast cancer—the most common cause of lymphedema in the United States—the lymph nodes may be removed altogether to stop it from spreading.
2. Cancer or Radiation Therapy for Cancer
It’s not just cancer-treating surgery that can cause lymphedema to occur. Radiation therapy, while effective at destroying cancer cells, “can sometimes damage nearby healthy tissue, such as the lymphatic system,” leading to lymphedema, says MedicalNewsToday.com.
The Mayo Clinic adds that the cancer cells themselves can “block lymphatic vessels,” resulting in lymphedema. “For instance,” the source says, “a tumor growing near a lymph node or lymph vessel could enlarge enough to block the flow of the lymph fluid.”
Secondary lymphedema can also occur because of bacterial infections, fungal infections, or parasites that cause inflammation or damage to the lymph nodes, restricting the proper drainage of the lymph fluid.
Severe cellulitis, for example, “may damage tissue around the lymph nodes or vessels,” says MedicalNewsToday.com, and can lead to scarring that increases lymphedema risk. Infection-related lymphedema isn’t a major concern in North America, though, as the Mayo Clinic indicates it is “…most common in tropical and subtropical regions and is more likely to occur in developing countries.”
1. Swelling in the Arms or Legs
When it comes to symptoms of lymphedema, swelling in various areas of the body is the primary one to be mindful of. MedicalNewsToday.com indicates that it may occur in “either a part or the whole leg or arm, including the fingers or toes.”
At early onset, the NHS says the swelling “may come and go…getting worse during the day and going down overnight.” Without proper treatment, however, it is likely to become “more severe and persistent” over time.
2. Feeling of Heaviness or Tightness in Affected Limb
Although swelling in the extremities is the primary symptom of lymphedema, it is not necessarily the first to occur. According to MedicineNet.com, “Mild lymphedema first may be noticed as a feeling of heaviness, tingling, tightness, warmth, or shooting pains in the affected extremity.“
The source adds that such symptoms “may be present before there is obvious swelling of an arm or leg” and can sometimes be accompanied by tightness in the joints, making them hard to move.
3. Difficulty Fitting Into Clothes and Wearing Jewelry
Along with feelings of heaviness or tightness in the affected areas, someone with lymphedema may also notice early on in the condition that they suddenly have a hard time fitting into their clothes or shoes.
Additionally, they may have difficulty wearing items like watches, rings, and bracelets, finding them too tight against their skin. This is due to mild swelling of the limbs, which can be hard to detect early on with lymphedema.
4. Restricted Range of Motion
Experiencing restricted range of motion is another common symptom of lymphedema. In some cases, it may be a result of tightness in the joints, which can cause affected individuals to have reduced flexibility.
Alternatively, range of motion can also be restricted due to swelling in the extremities, a common symptom of lymphedema that was mentioned earlier. Regardless of the cause, not being able to move the limbs as normal can impact a person’s day-to-day life by making it difficult to engage in exercise or other regular activities.
5. Recurring Infections
People with lymphedema tend to be prone to frequent and recurring infections, particularly of the skin. The National Lymphedema Network explains that this is because when lymph fluid becomes trapped within the body (as a result of damaged lymph nodes), it is “a favorable environment for the growth of bacteria.”
This can be particularly dangerous for those who have had their lymph nodes removed, as the source says, “…infections can progress rapidly and can be severe by the time they are detected.”
6. Hardening and Thickening of the Skin (Fibrosis)
Another common symptom of lymphedema is fibrosis, where the skin in the affected (swollen) area thickens and hardens. In some cases, MedicineNet.com indicates it may even “take on a lumpy appearance described as an orange-peel (peau d’orange) effect.”
Additionally, the source says, “The overlying skin can also become scaly and cracked, and secondary bacterial or fungal infections of the skin may develop.” Other skin symptoms to look out for include: tightness, warmth, redness, itchiness, blisters, wart-like growths, or skin that doesn’t indent when you press on it.
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