What Is Lymphdema? | Causes of Swelling | Treatment Options

Anyone can experience lymphedema — a buildup of fluid that often affects the feet and ankles. However, mobility issues and other aspects of living with MS can increase your risk of developing lymphedema.

“My ankles swell if I’m up too long, especially in the heat,” shared one member of MyMSTeam.

There are a few common connections between MS and fluid retention in the lower extremities. Once you and your doctor figure out what’s contributing to your lymphedema, you can take steps to find relief from swollen feet and ankles.

What Is Lymphedema?

Lymphedema is a buildup of lymph (watery fluid) that causes swelling. Lymph carries immune cells that are stored in lymph nodes — small bean-sized organs located in the armpits, abdomen, neck, pelvis, and groin and between the lungs. These cells travel in lymph throughout the body to help fight off infections. When the circulation of lymph in the lymphatic system becomes blocked, lymphedema can develop.

The symptoms of lymphedema include:

• Swelling, usually of an arm or leg
• Difficulty moving your joints
• Feeling of tightness
• Heaviness in the arms or legs
• Itching or burning sensations
• Thickened skin and other skin changes
• Unexpected weight gain

Potential Causes of Swelling

Lymphedema is one of several potential causes for MS swelling of the hands and feet, ankles, arms, or legs. Figuring out what’s causing swelling is an important first step in managing the condition — and possibly identifying another health issue.

Blood Clots

Blood clots form when clumps of blood cells and debris get stuck in blood vessels. Blood clots affect blood flow and can cause swelling in an arm or leg.

Members of MyMSTeam have shared stories of blood clots that led to swelling. “I’ve been in and out of the hospital from pain and severe edema in my left leg,” wrote one member. “My doctor confirmed that a blood clot had dissolved within the last 48 hours. There was 8 pounds of swelling throughout my body. Today the swelling has finally gone down, and I’m back down to the weight I was before.”

Blood clots may be life-threatening if left untreated, so it’s critical not to ignore the symptoms. If you experience cramping, swelling, skin discoloration, or tightness in your leg, it may be related to a blood clot. Inflammatory conditions, such as MS, and poor mobility — common in MS — increase the risk of blood clots. It’s always better to be safe than sorry, so call your health care provider if you suspect a potential blood clot.

One member shared their close call: “My feet are always cold and sometimes have tingling or numbness, usually after they swell. And lately, my ankles are hurting and feel weak 😫. My doctor had me do an ultrasound of my legs to make sure I didn’t have a blockage or anything like that.”

Infections

Infection, such as cellulitis (bacterial skin infection), is another potential cause of swelling. “I have had a fever and swelling in the leg for two days. I’ll go back to the doctor in the morning to see what he says. It’s a possible infection, just my luck,” said a MyMSTeam member.

People with lymphedema are more prone to cellulitis, and sometimes the infection itself is the cause of swelling. Cellulitis may start from a minor skin injury, and it’s more likely to spread if you’re taking medication that suppresses the immune system or you’re living with diabetes.

It’s critical for people with MS to take extra precautions with wound care to prevent infections. In addition, it’s important to seek treatment right away if you notice the signs of infection, including a swollen area that’s warm to the touch. Antibiotics can help clear up cellulitis before it spreads and becomes more dangerous.

Medication Side Effects

Certain medications for MS can cause swelling as a side effect. For example, swelling of the lower legs and feet is a common side effect of ocrelizumab (Ocrevus), a disease-modifying therapy given by IV infusion.

Even if swelling is a known side effect of a medication you’re taking, it’s important to ask your health care provider if there’s any cause for concern when you notice such changes. You may simply need to give your body time to adjust to the medication, or your doctor may recommend changing your dosage or switching treatments.

Heart Disease

Heart disease is a leading cause of disability and death around the world, including among people with MS. Studies show that people with MS have a 1.5-fold higher risk of dying from heart disease compared to the general population, though scientists aren’t exactly sure why that is. Nonetheless, making heart-healthy choices can help with swelling.

Swollen ankles are one of the early signs of heart disease. If your heart isn’t functioning at full strength, it may have trouble maintaining blood flow from the veins in your legs, leading to fluid buildup. Remember to keep an eye on your blood pressure, blood sugar, and cholesterol levels to avoid complications of heart disease.

Multiple Sclerosis and Lymphedema Treatment

Figuring out the cause of swelling is an important first step in figuring out how to treat lymphedema in the legs, ankles, and feet. Sometimes, though, swelling is unavoidable and won’t go away even with medical treatment. Fortunately, there are ways to make it more manageable.

Compression Stockings

Members of MyMSTeam have had varying degrees of success with compression socks to help with MS symptoms. These garments work by squeezing your legs and ankles to improve blood flow.

One member explained, “My feet have had numbness and swelling for a few years now, both before and after my MS diagnosis. I tried compression socks. Unfortunately for me, they do nothing to help and only make my feet go completely numb. I recently discovered a brand of toeless compression socks made of bamboo fibers — hoping they’ll provide relief.”

Another member shared, “I used to work for a place that sold compression stockings. It’s very important to have graduated compression, where there is more at the ankle and less toward the calf so the blood circulates toward the heart. Otherwise, there is no point.”

In general, compression stockings are safe, but they may not be a good idea for people living with certain health conditions, including peripheral artery disease, neuropathy (nerve damage or dysfunction), or certain skin conditions such as cellulitis. Speak with your doctor before trying compression garments and ask about how to use them, including how long to wear them during the day.

Lymphatic Massage

A manual lymphatic drainage massage improves circulation to reduce leg swelling. It’s generally considered a safe option, but it can do more harm than good if you have an underlying blood clot or infection. Ask your health care provider if you’re a good candidate for lymphatic massage before scheduling an appointment.

The lymphatic massage process involves two steps. First, the massage therapist helps release the lymphatic fluid from the affected area. Next, they guide the fluid toward your lymph nodes, where it can be naturally reabsorbed by the body. It can take several sessions to see a positive change from lymphatic massages.

You can also look into a mechanical lymphatic drainage system instead of a massage. This involves a sleeve with a pump that gently squeezes to help move lymph toward your lymph nodes. Just be sure to keep your health care provider in the loop about your plans.

Lifestyle Changes

Eating less salt, drinking plenty of water, and increasing your physical activity can help support circulation and may reduce lymphedema. You can ask your doctor for a referral to a registered dietitian nutritionist to help you cut back on sodium in your diet.

If you have limited mobility, physical therapy for lymphedema might help. Ask a physical therapist or occupational therapist for tips on adjusting your position and elevating your feet to minimize swelling. You could also ask your doctor about lymphedema therapy specialists near you.

Diuretics

Diuretics (water pills) may seem like a quick fix for lymphedema because they force your body to excrete excess fluid. In severe lymphedema cases, your doctor may recommend using diuretics along with fluid restriction. However, these medications aren’t safe for everyone and may not be the best treatment option for chronic lymphedema. Follow your doctor’s medical advice, and never take diuretics without their supervision.

Talk With Others Who Understand

MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 215,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.

Have you experienced swollen legs from a buildup of lymphatic fluid? What treatment options helped reduce swelling? Share your tips and experiences in a comment below or on your Activities page.