May 2020

Ask a Therapist: Your Lymphedema Questions Answered

John Jordi, BS, PTA, CLT-LANA, CI, ASTYM

John Jordi has been a therapist for more than 27 years, specializing in the treatment of lymphedema for the last 21. His background also includes treatment of orthopedics, strokes, brain injuries and wound care.

Due to the COVID-19 pandemic, we’ve all done our part to help slow the spread of the virus by staying home. For many with lymphedema, this can be stressful as routines are thrown off. With gyms closed, we have to get creative with exercise. Some therapists aren’t able to see their patients. Juzo wants to help, so we asked John Jordi to share his expertise and answer some of your lymphedema-related questions.

Q: I haven’t been able to get ahold of my therapist, and I have pain on my lymphie leg when I step on it – on the arch of my foot, going up to the calf. I have never experienced anything like this. I have wrapped, and it’s helped a little but not much, any advice?

A: If this is new symptom for you, I suggest seeing your doctor. There are several reasons this might be serious but getting your doctor’s eyes and hands on your leg will help to make the definitive answer. It might be as serious as an infection or as simple as a strain. Knowing more about the history would help. This is why keeping up with your PCP is as important as a lymphedema patient.

Q: If a person needed to consult with an MD about their lymphedema, what would that specialty be called?

A: Currently there is no one lymphedema doctor specialty for treatment. There are lymphologists, but they often are related to research. Certified therapists (usually PT, OT, assistants, nurses and massage therapists) are most involved in treating lymphedema and must take 135 hours of various classes. You would be best to talk to your PCP and get a diagnosis or referral to see a specialist MD then follow up with a therapist. Getting the primary lymphedema diagnosis can be critical in your treatment options. For example, if you have had/have cancer and the swelling is in that area (arm, leg, etc.), you would see your oncologist. If you have swelling in your legs, you may see a vascular doctor who specializes in veins. You might have swelling in both legs and find that a cardiologist is the best fit for your treatment. It is possible you have primary lymphedema, but ruling out other diagnoses is just as important as ruling in lymphedema. You can also help educate your PCP about lymphedema to help you in your journey.

Q: I experience pain, ranging from a level 3 to sometimes a 9, if I'm out walking or standing a lot. I also have venous insufficiency. Is my pain from just that or from lymphedema, as well?

A: Pain is a tricky symptom. By definition, lymphedema swelling should not cause pain, but tightness and fullness can be painful to some, and each person has their own pain tolerance. If you find your pain is like that of a burn and is overwhelming, I suggest you talk to an MD right away. If you find it is a nagging problem, that fluctuates from “not so bad” to “bad” at the end of the day, then consider your swelling. Is it under control? Is it getting worse? Are your compression garments old and losing the elasticity? Are your compression garments causing binding? Do you need to update your night time compression? For more information, read my “Getting the Most Out of Your Compression Garments and Therapy,” post for Juzo’s blog.

Q: I keep seeing posts from other Lymphies about a surgery called SAPL. Can anyone can receive the surgery, and how to go about qualifying for it? Do you have to have a specific amount of swelling from lymphedema to receive it and is it safe?

A: This is known as Suction Assisted Protein Lipectomy and is liposuction of permanent proteins and tissues in a swollen extremity. While it can remove tissue and make a reduction in the extremity, it does not cure the swelling. It is often used after long standing swelling is present with poor lymphedema treatment outcomes. You will still need to use compression therapy day and night as well as occasional follow up lymph treatment. This is something you will need to discuss with your team treating your swelling. It is possible that you have other avenues to try as well. As for safety, there are risks with any surgery, and you should discuss all of the pros and cons with your team and surgeon.

Q: I have cellulitis and need to take antibiotics four times per day. What else should I be doing? How long should I go without compression? Is the best thing I can do is rest and elevate?

A: First, I always refer to MDs to address specifics about what can and cannot be done while on antibiotics. But, if they have no limits, then I suggest going back to bandaging for a bit until the swelling goes back down to normal size and symptoms reduce. This can take several days or a week or two depending on how bad the swelling is from the infection. Be certain to finish all the antibiotics as the first antibiotic run does not always cure cellulitis. Call your physician if you still see symptoms, and you are about to run out of medications. It is important not to try to force your lymphedema side into a garment when you are much more swollen than normal, this can cause binding and actually cause more swelling and discomfort as well as potentially reduce the life of your garments.

Q: Does having Lymphedema mean we are immunocompromised and thus more at risk for covid-19?

A: The short answer is no. The immunocompromise that people with lymphedema suffer is from the organ of the skin. Since the lymphatic system of that particular portion of skin is not working, that means the skin in that specific area is more susceptible to cellulitis and other skin issues. Each person is different, and if you feel you are at risk for other reasons (see CDC site) then you are definitely safer at home.

Q: How do we stay active at home?

A: This is a great question. If you feel you should not leave your home you have many options. Not all options are good for all people, I recommend trying each one several times and see which you like. Also, many times you might be in the mood to try different things. In the clinic we have a saying, “Those who rest, rust.” That means, if you are not moving you are getting worse. No one stays the same by just sitting around. You have to get busy moving, which has great benefit on emotions, stress and your lymphedema, here are some options:

  • Search YouTube for at-home exercises.
  • My personal favorite at-home workout (reps: 50, sets 2-3 times a day) includes:
    • Mini squats (don’t hurt your knees)
    • Single leg stance at kitchen sink for balance (start with two hands and work your way down to no hands for 20-30 seconds)
    • Heel lifts
    • Leg kick outs (forward, backward and sideways)
    • Walk in place with high knee lift
    • Try adding resistance bands for exercises when they get too easy

Read some recommendations from Juzo’s brand ambassadors for staying active and positive while being home at this time – like participating in the #movethatlymph 2020 virtual group challenges. When you are on your own, you are less likely to succeed, or it will be slower than with a group. Get out there and have some fun.

Q: How do we deal with more swelling (since our activity levels are challenged, not being able to get to the pool especially, to the gym, classes, etc.), as well as not being able to have treatments done by our PTs/CLTs?

A: Telehealth might be good for some patients to discuss with therapists some options. In general, doing your own self-MLD program two times a day is best. If you are not working now, schedule a time to work specifically on your program. Bandaging is also very good for reduction during this time if you are familiar with that part of therapy. You can call your facility and see if your therapist is able to discuss treatment options for you. Therapy is considered an “essential” service and many therapists are working, so yours might be able to answer questions if you don’t feel like getting outside yet.

Q: How do we handle the emotional side of the crisis, as stress is a big trigger for our Lipedema symptoms?

A: Stress can affect many people in different ways, there has been a lot of research here showing that chronic swelling does affect your mood and psychosocial health. There are many really good Facebook groups, as well as support groups you can call. Lymphie Strong is a great network. Finding the right group for you might take some digging to help you get to the group you feel is best for you. Also, local groups can be helpful (when social gathering is allowed) to help discuss issues and form bonds to help support each other. You are not alone in this, but you may have to get out of your comfort zone and talk and/or virtually meet with others to help share your burdens.

Q: I have been wondering about trauma in a lymphedema affected limb that I broke. What is the best way to work through my leg break?

A: Lymphedema can certainly be influenced by trauma and while the body will heal from the break, it can also cause your swelling to be increased. It is best to address the healing of the break with your ortho MD, then address the swelling when they feel it is best. You might have to increase in size for a bit, but you and your therapist can reduce the swelling through proper lymphedema management and get you back to your normal size and in Juzo garments for greater freedom.

Q: There’s a population of people who work and now are not, so they are able to elevate and not be stuck at their desk, per se. When work restrictions are lifted what then?

A: Regardless of work or at home, live your life. If you are having swelling while at your desk, talk to your therapist about options to help increase the support to prevent increase in size. I have used Velcro wraps over garments for some patients who have this issue. It is going to take some time to come to the right solution. Take time to note what makes your lymphedema better or worse. I often remind patients in the clinic that while I know more about lymphedema treatment they know more about their own lymphedema. It is also important to remember that once you have a good support solution with garments, don’t take that as license to not get out from your desk, moving has many positive values that go beyond lymphedema. Remember, “Those who rest, rust.”

Q: I can’t find someone to measure me for a new compression garment. What should I do?

A: It’s probably time for many of you to replace your garments – and that can be challenging during the COVID pandemic. You may not feel comfortable getting out. Your normal place may be closed or your fitter may not be available to measure you. It may seem best to order a garment online in the last size you ordered, but I am often of the mindset to avoid this option. You may not be exactly the same size you were six months ago. If this is the case, you will be stuck with a poor fitting garment. Here’s why: if you have increased or decreased in size, your old garments may still fit, but the new garment will not be fatigued and the synthetic compression fibers will place the proper compression on you and will feel tighter than an older sleeve or stockings. Many times, people (including therapists) will order the next size up, which seems logical, but it’s not. Instead of containing your swelling or reducing your size, you will be accommodating your swelling and getting bigger. Compression garments are medical grade and require skilled personnel to measure you to get the proper fit. When you can’t go to your normal place or reach your therapist, visit Juzousa.com. Ask your local Juzo representative where you can find a Juzo certified fitter near you to measure you. Don’t forget to ask about new patterns and colors!


Do you have questions for John or Juzo? Leave them in the comments below, and we’ll get back to you as quickly as possible.

Carol Lang commented on Jun 29, 2020

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After shoulder replacement surgery and a rod inserted in my arm and 35 lymph nodes removed over 5 years ago, I am still dealing with swelling in my arm. Not only swelling, but it looks like bruising on my skin. Like some capillaries underneath the skin. I have been to my surgeon, my oncologist and my dermatologist but I think it is lymphedema. What can I do? I exercise and I try to wear my sleeve. Some days the area is darker than other days. It’s scary to look at. Any advice? Have you ever seen other patients with this problem?

Lois commented on Jun 28, 2020

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I had the extra skin removed from my upper arms 12 years ago from loosing weight. My one arm I lost feeling due to nerve damage. Dealt with the feelings now it has gotten bigger and feels like its a balloon and no room for anything. What should I do. I am 67 years old. Thank you

Leona commented on Jun 28, 2020

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I can’t find compression LARGE ENOUGH I bought 5x from Amazon ( what a joke that was I’d say barely medium) any way my calves are 28” on a good day 32” when swollen, who can help me ?

Linda Queen commented on Jun 27, 2020

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Thank you so much for taking the time and answering questions. Do you have a newsletter or a blog. If not you should get one. We need information all the time

Annette Leffelman commented on Jun 26, 2020

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I have osteoporosis and broke both legs last year tibia fibia and in total stress fractured 5 times on my left leg and broke the malleolus on left ankle on the right leg broke tibia and fibula bone had an external fixature on left I have a very hard time getting the left to heal on a pun sight I wrap use careesia at night but deal with lymph drainage on the one site what do you '_ recommend I

Theresa Lewis commented on Jun 25, 2020

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John I need measurements again I was so sad to here you are not at Tremont

Joy C. commented on Jun 04, 2020

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John is my therapist and he is the BEST! Thank you for this article.

Joe Zuther commented on Jun 04, 2020

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Very informative, thank you!

Lindsey Sosovec commented on May 13, 2020

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Great read. Thank you Juzo

Lulwa commented on May 11, 2020

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Dear Dr Juzo, can i get a private virtual consultation for my daughters lymphedema? I dont know how to gauge her progress becuase the swelling fluctuates