The world of lymphedema (by Sarah)

I have been welcomed to the world of  lymphedema. After I was diagnosed and had surgery my surgeon briefly talked to me about it but said that none of her patients got lymphedema. I thought I was safe, thinking I would not have a problem with it. I was wrong, I have been suffering from it for some months now and did not realize it. I am suffering from mostly truncal lymphedema. Like Stella my symptoms are mostly pain with a bit of swelling. I have made lots of trips to my oncologist complaining about my pain and was worried that my cancer had come back. Little did I know that lymphedema is very painful. Something I was not told before. I have been to a therapist 4 times now and it seems to be working for me. I am educating my self on how to move my lymphatic fluid that builds up under my arm and in my back. I have been fitted for a sleeve and a vest as well. I will be interested to see how the vest works, I will be wearing it at night and am hoping that I will sleep more comfortably.

The signs of lymphedema may include:

  • swelling in the breast, chest, shoulder, arm, or hand
  • area feels full or heavy
  • skin changes texture, feels tight or hard, or looks red
  • new aching or discomfort in the area
  • less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
  • trouble fitting your arm into jacket or shirt sleeves
  • bra doesn’t fit the same
  • ring, watch, and/or bracelet feels tight but you have not gained weight

Early on, the lymphedema may be relieved by raising the affected limb and the skin usually stays soft. But over time, the swollen area may become hot and red and the skin hard and stiff.

Here is a link with more information that is very helpful. My advise is to educate yourself, know the signs of  lymphedema and know your body. Talk to your doctor and be persistent. My doctor told me I did not have a problem but the lymphedema doctor saw my problem right away.

Message, the right kind of message is the key, I was not educated and was not doing my message correctly. If you do have signs of lymphedema get to a good certified lymphedema therapist right away. Your doctor should have a list of good therapists in your area. I feel more relaxed now and know why I have this pain. The pain isn’t fun but I am comforted by the fact that I know what is causing it and am getting the tools to deal with it.

5 Responses to The world of lymphedema (by Sarah)

  1. Renata says:

    Hello, I’m from Brazil and would like to tell you an interesting and stimulating site on lymphedema. As the language is Portuguese, I suggest using a translator:


  2. Joe Zuther says:

    My name is Joe Zuther, I am the director of the Academy of Lymphatic Studies and I would like to follow up on the issue of locating certified lymphedema therapists. Unfortunately, doctors generally do not have lists if certified therapists available. A good source is to locate therapists on websites of those schools, which train and certify lymphedema therapists. There are several schools in the US, one of them is the Academy of Lymphatic Studies, which has a feature on its website to locate a certified lymphedema therapist in specific areas (“Find a Therapist”).
    Hope this helped,

  3. lymphoma says:

    Having been hit by non-hodgkins, this was good to see. Thanks for this.

  4. Andrew Pelt says:

    Just to say nice site and interesting posts. If any readers are interested in lymphedema treatment they can check this site out

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