LE AND PAIN

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Del14
Del14 Member Posts: 38
edited June 2014 in Lymphedema

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  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited November 2010

    Jo,

    Do you have a glove and sleeve?  When my arm feels like that, and it's not very often, I put my sleeve and glove,take lots of water, and do MLD.  I'm sure there's a pain thread here somewhere, and that Binney and the girls will be along to help you out. 

    Take something for the pain, too.  I'm sorry you are having it.

    Bobbie

  • kcshreve
    kcshreve Member Posts: 1,148
    edited November 2010

    I have some aching and moderate stinging, as well as very full feeling, kind of like a tourniquet is on my arm.  With MLD, much of that is relieved.

  • mrsnjband
    mrsnjband Member Posts: 1,409
    edited November 2010

    I have had both kinds of pain.  I have a constant pain that runs down the back of my arm.  But I also have sharp pains in the front & back of my arm.  It was the pain and inflammation that had me thinking I needed to go to an LE therapist.  MLD really does help.

  • Suzybelle
    Suzybelle Member Posts: 920
    edited November 2010

    My pain is more of an ache, and with overuse (which is every afternoon M thru F after 2pm) I get a stinging, pressure-type feeling.

    Neurontin and Volteran cream help tremendously.  Since I started using these two things, I have almost no pain until later in the afternoon and none on the weekends.

  • CAW
    CAW Member Posts: 45
    edited November 2010

    I'm glad to see this post because I was wanting to ask a similar question.  I have pain or aching in my arm and fullness in my armpit pretty much everyday.  I also get a "needle stick" pain in my fingers from time to time.  I have very little swelling so my LE therapist said that I didn't need a sleeve.  I haven't seen a therapist since mid summer due to insurance not paying.  I think I'm going to have to suck it up and go back to see her tho & pay out of pocket.  I over-used my arm about 2 weeks ago and ended up having lots of truncal pain in my ribs....it was very difficult/painful to take a deep breath and it still hasn't totally gone away.  I do LE exercises and MLD daily but still cannot get pain free.  Per the LE therapist,  I'm considered stage 1 LE.....is it possible to ever be pain free or is this the new way of life for me?  I can't talk to my BS or Oncol about it because they don't seem to know much about LE.  They both tell me that they question me having LE because I don't have much swelling and they also tell me that LE is not painful.....this makes me want to scream!!!  This is also someone who told me not to worry......that I wouldn't get LE because I had a SNB!!  The LE therapist says that they are very much "incorrect" and that I do have LE and that the pain I'm experiencing is common.

  • kira66715
    kira66715 Member Posts: 4,681
    edited November 2010

    1) LE is painful--heard a whole lecture on it from Andrea Cheville at the NLN

    2) Just a "little" swelling doesn't mean you don't have LE

    3) Unfortunately, cellulitis harms lymph vessels--that's why you flare after it.

    4) For some reason, truncal LE is very painful--usually more than arm/hand LE

    5) Sometimes the pain from LE overlaps with post-mastectomy pain syndrome and may be tied to each other.

    Don't doubt what you perceive--it's real, and LE treatment should help--if not, there are medications.

    Kira

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2010

    I have truncal LE and it's when I get the pain that I notice the swelling and "remember" to do my MLD. It happens every 6 weeks or so, not on a regular enough schedule for me to know what sets it off. I am surprised that the pain breaks through the pain meds I'm on. How bad would it be if I wasn't on the Hydromorphs and Oxys?

    I feel so bad for those of you who have the pain every day!!! We've gone through enough already!I

  • lionessdoe
    lionessdoe Member Posts: 780
    edited November 2010

    I have all that everyone else mentioned, but wanted to add the most aggravating part for me is feeling like I have a sunburn toward the afternoon and the seams of my tops often feel like someone is scratching a sunburn. I wear my T-tops inside out at home. Wearing a sleeve at work helps. But it down't cover the arm pit area. Also, wanted to add the weather factor. It's always there for me too. MLD does help, but when a storm is coming it's mostly do what I can but know I'll have to grin and bear it til the storm breaks. I am also struggling with separating Lymphedema pain from RIBP.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2010
  • lionessdoe
    lionessdoe Member Posts: 780
    edited November 2010

    Radiation induced Brachial Plexopathy. There's a discussion topic about it at the top of the lymphedema forum.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited November 2010

    Huh, I dodged THAT bullet! Lucky me..... that sounds like a doozie!

  • Trishia
    Trishia Member Posts: 572
    edited January 2011

    A BC sister posted this on her FB and it resonated with me and many of us here. 

     http://www.webmd.com/breast-cancer/news/20091110/chronic-pain-after-breast-cancer-surgery

  • LizM
    LizM Member Posts: 963
    edited January 2011

    I'm still on a waiting list for an LE threrapist.  I'm five years out from bi-lateral mastectomies, auxillery lymph node dissection and rads to both the supraclavical nodes in the chest and the auxilla.  Yep, I'd say I'm high risk.  Anyway I have been experiencing pain in the treated area for the five years.  For some reason it seems to flare up in the winter months, which has landed me in PE for frozen shoulder twice in January.  Well it is acting up again, shoulder and arm pain but this time instead of treating frozen shoulder I am going to find out if I have LE.  One thing that has complicated things is that I am on Femara and I never know if Femara is making things worse.   When I touch my left chest right above my implant, it has always felt like pins and needles and seems swollen to me.  My PE told me I have significant scar tissue in that area.  I have always been suspicious if I truly had frozen shoulder or if that is just the easiest diagnosis to give me.  What caused me to think LE this time is that my arm was aching and before it was just pain in the shoulder that made it's way to the right side of my upper back and down my arm. 

  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Good move, Liz! Please let us know what you discover. If it's LE the treatment will reduce (or even eliminate) the pain, and you'll learn how to do the self-care you need to keep it that way.Smile

    Waiting with you, and hoping for a fix!
    Binney

  • Sher
    Sher Member Posts: 540
    edited January 2011

    I'm with you Jo.  I take Celebrex, but occasionally  would need additional help from Darvocet (actually the generic brand).  Now that it's off the market, not sure what will be available to take its place.  I too have those cramps that seem to extend out and up from the chest that seem to happen mostly when I move or twist into a certain position......just grabs me for a few seconds.  Because of my arthritis I see a chiropractor regularly and notice that when my neck is not right, it can also affect how my shoulder and arm feel, probably something to do with the nerves, both in my neck and what has been damaged in my chest and axilla.

  • Sher
    Sher Member Posts: 540
    edited January 2011

    I haven't thrown out my Darvocet yet either!  The cramping pain started after my axillary node biopsy and no one has ever given me a clear explanation - they just mumble something about probable nerve damage. Now that I'm thinking about it, wonder if there's a medicine for nerve pain that might work?  My doctor prescribed Tramadol but I'm a bit afraid of that even if I wouldn't need to take it every day.

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