Living with lymphedema – The resource guide

If you’ve recently been diagnosed with lymphedema, you may feel like you have more questions than answers. But know that you’re not alone and that there’s help to support you along your journey.

LFSTL_lymphedema-help_Sigvaris-US.jpg

You may feel overwhelmed after receiving news about a lymphedema diagnosis. You might be asking, “what now” and “how will I manage this on my own?” Navigating your new condition might seem stressful, but it doesn’t have to be.

Use this Resource Guide to connect with professionals, networks and people – like you – who can help you every step of the way on your path to wellness.

I am experiencing new/unusual symptoms in my limbs.

Who can help?

  • Primary care provider
  • Certified lymphedema therapist

How can they help?

  • Can evaluate symptoms and recommend treatment and therapies to improve quality of life.

Where to go/how to reach out?

  • Call your primary care provider or certified lymphedema therapist. If you are experiencing an emergency, always call 911.
  • If you don’t have a lymphedema therapist, use the search feature on this website to connect with one.

How to find compression wear that keeps swelling down and fits my lifestyle.

Who can help?

  • Sigvaris compression therapy guide
  • Primary Care Provider

How can they help?

  • After talking to your physician about compression wear, choose from a variety of options that can help you feel and look your best while managing swelling. Visit the compression guide to find a retailer near you.

Where to go/how to reach out?

I want to start a wellness regimen and achieve my fitness goals.

Who can help?

  • Certified lymphedema therapist

How can they help?

  • A certified therapist can create a plan that’s tailored to you and your unique goals. Many people with lymphedema trust their therapist to guide them on the road to wellness.

Where to go/how to reach out?

  • Find a certified lymphedema therapist nearest you using the search feature on this website.

When I’m feeling down…

Who can help?

  • Family and friends who understand or are willing to learn about lymphedema.

How can they help?

  • With a listening ear and an open heart, friends and family can provide you with the emotional support you’ll need during your journey.

Where to go/how to reach out?

Keep a routine of checking in with those closest to you. Sharing your experience can help your loved ones know how to support you.

When I’m feeling lonely

Who can help?

  • Support groups
  • Lymphedema events

How can they help?

  • This is a great opportunity to hear stories from others who are also living with lymphedema and even make new friends.

Where to go/how to reach out?

  • Newspaper community calendars
  • Local non-profit organizations and support groups. You can find a list of lymphedema support groups here
  • Hospital bulletin board
  • Social media (e.g., Facebook, Meetup, Eventbrite)

When I’m feeling not just down, but depressed…

Who can help?

  • Primary care provider
  • Mental health counselor

How can they help?

  • For some, the challenges of living with lymphedema can make them feel depressed. A counselor can work with you and your doctor to evaluate your symptoms and create a plan (which may include medication and cognitive therapy). The plan will help you to cope and thrive beyond depression.

Where to go/how to reach out?

  • Start by talking to your primary care provider who can refer you to the right mental health professional and resources to find support.

I want to learn about more my condition

Who can help?

  • Online resources
  • Textbooks, journals and references

How can they help?

  • Educate yourself about your condition and stay informed about the latest research. Visit reputable websites and follow these networks on social media.

Where to go/how to reach out?

For more information about lymphedema, visit:

If you’re newly diagnosed with Lymphedema, the first person on your team should be a certified lymphedema specialist. Use the search feature here to find a certified lymphedema therapist near you.

Further reading

FK_Couple-with-bike_ECNE.jpg
Lymphedema
Do you have a persistent, asymmetric swelling in one or more of your limbs? Is your affected limb painless, but you feel tightness in it? Are other family members also experiencing swelling of the limbs or did you undergo a cancer treatment or surgery where lymph nodes had to be extracted? If so, your lymphatic system may be compromised and you may have developed lymphedema. Read here why compression is essential in treatment of lymphedema.
Read more
Get the facts about lymphedema - the most common myths on the condition
Get the facts about lymphedema
You’ve recently learned that you have lymphedema, but how well do you know the facts? This chronic condition affects around 100 million people worldwide. While resources on lymphedema are growing, there’s still a lot left to learn, making it important to dispel myths while bringing much needed information to light about this disease.
Read more