The world of lymphedema (by Sarah)

December 6, 2009

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.

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On my way to pain-free

November 12, 2008

My lymphedema physical therapist is a genius.  Not only does she drain the lymph that clogs my right arm as a result of my mastectomy, but she finds answers to my other aches and pains.  Yesterday, she discovered what’s been causing the incredible pain under my right shoulder blade.  The PT out here didn’t.  He stretched the muscle for 8 sessions, but never found the cause.  She took about 5 minutes to figure it out.

Get this.

Last spring’s radiation damaged the muscle under my arm.  Which pulls on the muscle across my back under my shoulder blade.  And pulls my vertebrae out from under my spine.  Which hurts like hell.

Presto.

An answer to the pulled-out vertebrae (which she put back in quickly and painlessly), the back pain, the neck stiffness, and the tenderness on that side under my arm that has lingered for months.

I go back tomorrow to have the muscle worked on — and hopefully the pain fixed.

Seriously.  I think this woman is a genius, and a great person too — she’s working on a program to bring lymphedema therapy to breast cancer patients in Egypt!

If you’re a breast cancer patient with a mastectomy and haven’t seen a lymphedema therapist yet — go.  It’s worth every penny and every second of your time.  And you never know what else she might be able to fix!