Lymphedema Symptom?

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Michellelynn875
Michellelynn875 Member Posts: 21
edited August 2016 in Lymphedema

Hi there,

I have mild lymphedema. Started with swelling of my fingers and then an inch bigger in parts of my arm. Now I'm noticing some fluid in my incision area, armpit and can see that my collar bone isn't as dominate as the other side. I wear an edema glove given to me by my ot, she does specialize in lymphedema. But other than the glove she's hasn't directed me on how to stop the swelling.

I have had a double mastectomy, 23 nodes removed on my affected side March 21, 2016.

I recently started having a bruising feeling that starts on the top of my hand by my thumb, continues down my forearm and past my elbow. It's like a string is inside my arm, pulling when I reach. The area on my outer arm doesn't feel bruised. I tried massaging it gently and could feel a few small lumps that were very painful. Especially in the inside the bend of my elbow.

I went to see my lymphedema specialist again and she said "yes there may be some swollen lymph nodes. Just prop your arm and take it easy." She she wasn't familiar with the bruised feeling I was complaining about.

I want to be proactive! Am I over reacting? Is this normal? Could this be the start of something? I'm feeling like I'm not doing enough to stop the lymphedema from getting worse.

Has anyone else felt this sensation before? Could this be anything to worry about?

Michelle

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Comments

  • AnnaSm
    AnnaSm Member Posts: 5
    edited August 2016

    Hello Michelle!

    Im a fellow lymphie! My name is Anna! hmmm, could be your right about this. I mean, your swollen, you've had undergone mastectomy. Do you think that the symptoms your experiencing is the start of more swelling, or maybe something like a nerve stretch pain?

    My physical therapist recommended me to do this exercise for swelling in the arms, and it works great for me! Its an exercise that has proven to remove some lymph fluid! Its called instructions for arm/leg exercise and deep breathing program, from Niel piller. Here is a google link to you :) Its the first link! Its free.

    https://www.google.no/webhp?sourceid=chrome-instan...

    If you want something more comprehensive then you could try this exercise program made by exeromed. I am currently using this, and feel that it's working great at keeping my swelling at a minimum.

    http://www.exeromed.com/product/lymphedema-upper-a...

    Hope this helps! Looking forward to an update from you!

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  • Toscaxoxo
    Toscaxoxo Member Posts: 18
    edited August 2016

    Unfortunately, I know what you mean. When mine flares, I have a "bruised" feeling in the top of my hand, my forearm and more rarely my upper arm. When it settles down, that feeling goes away. It also could be cording, which is uncomfortable (and gross) but not harmful and can be broken up with massage. Therapy did not help me. I did everything they recommended. For me, running is the best thing for my lymphedema. My arm bothers me much less on days when I go for a good run. Like you, I had double mx and nodes out (29) on the affected side. I wear a glove and sleeve from the time I wake until 7pm. The science of lymphedema is in its infancy, and I have heard a lot of contradictory information from experts, so I try different things and stick with what feels better. I hope you find some reprieve.

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  • Michellelynn875
    Michellelynn875 Member Posts: 21
    edited August 2016

    Thanks so much for the links. I'm printing them out. I have not been told to start breathing exercises! As for the running, I'm four months out of surgery and I've yet to begin exercising. I know it's important to get moving. Now that the joint pains have started to ease up a bit, I'm going to take your advice.


    Thank You!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2016

    Michellelynn, hello!

    What you describe with the "string" on the inside of your arm is likely Axillary Web Syndrome (AWS), commonly known as "cording." Here's more information about it:

    http://www.stepup-speakout.org/Cording_and_Axillar...

    It doesn't sound like your OT is taking an active role in helping you with this, and unfortunately if LE isn't treated well quickly it can be a lot harder to control going forward. How about looking around for another LE therapist for a second opinion? LE is chronic, so we really need someone we can trust and communicate with easily. Here's how to find well-trained LE therapists near you:

    http://www.stepup-speakout.org/Finding_a_Qualified...

    Standard LE treatment is called Complete Decongestive Therapy (CDT) and consists of a very gentle, directed "massage" (called Manual Lymph Drainage or MLD), compression (initially in the form of wrapping in layered bandages, "graduating" to compression garments for all affected areas), specific slow exercises, and careful skin care. All of those should be initiated and taught to you by a well-qualified LE therapist (OT or PT). Here's more about LE treatment:

    http://www.stepup-speakout.org/treatments_for_lymp...

    Brava for wanting to be proactive! In the case of LE, that means learning all we can about it and in some instances, helping to educate our healthcare team as well! (Sigh!)

    Be well, and do please keep us posted!

    Gentle hugs,
    Binney

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  • Maya15
    Maya15 Member Posts: 323
    edited August 2016

    Hi Michelle,

    I'm being treated for some of these symptoms at a lymphedema clinic (in my case the bruising feeling, strings and painful small lumps are caused by cording). My therapist has me doing arm stretches to stretch the cords and gentle massage by putting the hand on the area that hurts and gently stretching the skin.

    I agree with what everyone said above and I don't think you're overreacting. It doesn't sound like your OT therapist is doing what's necessary and you're getting buildup of lymph fluid in your arm. You need to get the fluid moving out of your arm and down your trunk. I would recommend you get a therapist to teach you manual lymphatic drainage (in the meantime here is a link to a video: http://www.youtube.com/watch?v=pSD7j8mSVkM&list=PLFC32283BB86A13A0&index=4&feature=plpp_video). They should assess you for lymphedema and get you either bandaging or a compression sleeve (not just the glove).

    Also for me, exercise has really helped reduce the swelling.

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  • Moderators
    Moderators Member Posts: 25,912
    edited August 2016

    AnnaSm, Michellelynn875 and Toscaxoxo welcome to Breastcancer.org, and to this amazing group! We really appreciate you sharing your experiences with lymphedema for all the others!


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  • geewhiz
    geewhiz Member Posts: 1,439
    edited August 2016

    I had the craziest thing happen this week...

    In 2009, I had my mx and got cording. It went away after a month or so, but it was scary. I am very active and yesterday I ran 11 miles. I live in the south, and it was HOT even early morning (90 degrees).

    I felt the cording feeling again, then my arm felt bruised right at the inside of my elbow. It felt squishy and really uncomfortable. I finished my run and hopped into a friends cold pool hoping the water pressure might help. It did, thank goodness. It is still tender this morning...but isnt that a heck of a note??/7 years later to have something like this? I can't think of anything else it would be.


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  • Michellelynn875
    Michellelynn875 Member Posts: 21
    edited August 2016

    Thank you ladies! Took your advice. Made an appointment with a new ot, who was highly recommended. I have to drive 40 minutes to see her. But I feel confident it's going to help. Can't wait ti start on Wednesday.

    I'm the mean time I've been doing my wall stretches and trying to do some breathing exercises. But it's not getting better. The heat and humidity we're having is also causing my lymphedema to act up. I can now feel cords in my arm pit. The tightness that runs down my arm makes it unbearable to stretch the arm straight.

    I have mild lymphedema, does anyone know if this is going to cause my lymphedema to get worse?

    I'm so worried. I'm really having a hard time. My last chemo was February 29th, since then my eyebrows and eye lashes grew back, only to fall out again recently. I walk around flat chested because my prosthesis are hot and uncomfortable. My hair is shorter hair than my husbands, I have wonderful hot flashes from the tamoxifen.... Joint pains... I could go on. Now let's add this worry.

    So thank you all for being here. It's good to know I'm not alone and it's nice to know there are people who don't feel I'm overreacting.

    Michelle

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  • Michellelynn875
    Michellelynn875 Member Posts: 21
    edited August 2016

    Update, you ladies were right. I do have cording. I've attended three sessions with an ot lymphedema specialist. She's wonderful. She's tried to pop the cord. But it's stubborn. She deep massages me and gave me intense stretching exercises. It's feeling better slowly.

    Thanks again for the advise.

    Michelle

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  • Jennie93
    Jennie93 Member Posts: 1,018
    edited August 2016

    That's good, Michelle, but just a word of warning - be very cautious with that - my LE was actually caused by a PT trying to "massage away" the cording. Make sure your PT is very well trained in LE and if she does anything that is painful, insist she stop immediately!

    The LE is more painful and aggravating than the cording..... and LE is forever.



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