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GRRRRRRRRR I HATE LE..........

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Comments

  • GuyGirl
    GuyGirl Member Posts: 102
    edited May 2013

    They just feel sore.  For example if I lay on the floor to do a leg lift, my outer thigh where it touches the floor is very sore.   My thighs will also ache for no reason.  I have not increased or decreased my walking/exercise. 

  • purple32
    purple32 Member Posts: 1,767
    edited May 2013

    Hmmmm.... sorry Ellen, I just dont know. 

     Hoping someone else will poke their head in.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    GuyGirl - I know the feeling - been dealing in PT with my scapula spasms all month - PT mentioned friday that maybe all this pain has actually started from all my breast and sternum pain in the front.. - LE Therapist is in the same office - we all had a good discussion together - WHY I can't do weights more than 10 lbs and PT follows his guidlines now - But through all this the LEist also told me the swell I'm getting from PT not to worry about UNLESS I can't get the swell down quickly.. So far a bit of swell down to my hands but I wear sleeves and gloves all day and MLD and lots of water has kept it in control - so... taking everything slow - PT and LEist are talking daily and everyone is on the same page.. Good news for you all - it can happen.   

  • binney4
    binney4 Member Posts: 1,466
    edited May 2013

    Kitty, here's a simple (and wonderful!) MLD for head and neck. Try it out sometime when you can relax and take it slow. Low lights, and maybe some soft music or a scented candle to help with the relaxation. Whether the swelling is from tension or LE, this should help!Smile
    www.aurorahealthcare.org/FYWB_pdfs/x23169.pdf

    Gentle hugs,
    Binney

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    I've have a bit of a dilemma  - Now that I am taking tamoxifen (which can cause blood clots, I here) and my good arm is being treated like it had LE (long story) - Where should I have blood drawn from?? I hear from the nurses that it can be dangerous at this point to take blood from the foot because of the added chance of getting a blood clot.  Now the good upper arm is the part that swells - if I were to have blood drawn out of my hand without a tourniquet?? Would that be the safer route?? Just needed some extra input of what others have done. 

  • KittyDog
    KittyDog Member Posts: 656
    edited May 2013

    Thank You Binney!  I was doing the back of neck just trying to release the tension.  Swelling looks better today but neck is back tight and face feels..well no other word but fluffier than the other side even though I don't see any difference looking in the mirror.  I had dental work two weeks ago on this side...I almost wonder if it didn't set this off with a combination of rolling hair for my child and a friend for a Dance recital.  Also having a little bit of TMJ from the change in my bite.  I have a temporary crown on and I don't go back till the first of June.  Why is it always something.  I finally got my legs back down from eating ham at Easter.  grrrr

    Purple there are only two places in our big capital city for LE treatment.  The waiting list to get in is usually a month in the hot months up to two months.  Not good but it's all we have.  I did send her an email but I haven't herd back from her.  She may be on vacation.

  • purple32
    purple32 Member Posts: 1,767
    edited May 2013

    I did send her an email but I haven't herd back from her. She may be on vacation.

    UGH! sorry.
    All I can say is be persistent and in the meantime, I would follow Binneys advice !

    GMA
    Are you just starting out with weights and hoping to lift more than 10 Lb ?  Your post has me  a bit confused.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    No I'm not hoping to get to 10 lbs - As part of my PT though to strengthen and stretch the trap and scapula muscles she has me using small weights but she is a very active person and I am teaching her about LE as we move along - the 10 lb limit came up in a conversation and she wanted to know why i couldn't.

  • purple32
    purple32 Member Posts: 1,767
    edited May 2013

    Oh, I see gma.

    Well, good you are teaching her things then.


    Perhaps you can print her Carol's exercise doc for the SUSO site.  I gave it to the LIVESTRONG folks at the Y , and they were very impressed.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    Hmmm didn't think of that - thanks purple - i will do that

  • hugz4u
    hugz4u Member Posts: 1,818
    edited May 2013

    Oh my.... does LE have to show up in other weird places just as we get use to treating our regular areas? Hang in girls we are here for you! Chocolate for all those suffering from new LE popping out of the woodwork.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    Well girls - it happened - PT and LE don't mix very well.. Get my scapula feeling better now my upper arms and under arms have swell I can't seem to get down.. I tried my best on my own - but it is in a spot where the sleeves don't get to.. Oh, what to do.Undecided. My PT and LEist are in the same office and when he was walking by me in the office today and saw the buldging out the sleeve, I asked Him if I should make an appt with him.. He shook his head yes and I said an you need a new script for that... and he shook his head again.  I emailed my primary who wrote the PT script and said, "My scapula pain is doing much better but in the process of the PT, I find I'm having a little bit of LE swell. There are certain parts of the upper arm and underarm that need a little more attention than I can give it. J.S., my physical therapist and J.H. my LE therapist are in the same office. When I saw J.S.today, I also asked J.H. what to do. J.H.suggested I make a few appts with him to help with the Lymphatic drainage, but I can't do it on the same script as for my PT.. Is there a way to send a LE therapy script over to J.H.?"  Hope that works. 

  • purple32
    purple32 Member Posts: 1,767
    edited May 2013

    Gma

    I wonder if you might get LE therapy the day AFTER your PT.  If your PT causes swelling, I am thinking perhaps some  excellent MLD afterward would calm things down.  Also, are you wearing a  good compression cami or T ? ( You said your sleeves arent covering he part that is swelling.  )  Cover those parts up, girl!  Surprised

  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2013

    GMA - since they are in the same office you might be able to have one right after the other.  I did that when I was seeing PT for my BC side shoulder and chest issues.  I let them decide who I would see first, but it was PT, then LE, makes for a long appointment, but it worked great!!  Right now I'm see my LE for OT because of issues with my thumb joints, she does the OT first, then the LE-T.

    And they may be able to teach you how to wrap those areas!

  • ckmoss
    ckmoss Member Posts: 95
    edited May 2013

    You wrote this awhile back.  Did it ever get better?  I am having to get lymphs out Wednesday and had never heard of this...my surgeon just told me it was a risk and sounds perfectly horrible.  Is it better?

  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2013

    It can be manageable, but you need to stay on top of it.  Make an appointment with a LE therapist as soon as your surgeon releases you to, make sure they are a certified lymphedema therapist.  I highly recommend at least one appointment, the information you get can save you from problems down the road.  Good luck with your surgery CKMOSS.

  • purple32
    purple32 Member Posts: 1,767
    edited May 2013

    gkmoss

    Linda makes a  good suggestion.

    Please visit this website in the meantime so you will be well informed on risk reduction:http://www.stepup-speakout.org/

    Good Luck !

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    Had a good visit with my sleep doctor. When I started having issues, she wanted to "SEE" me to see my SEs from the tamoxifen and Nuvigil.

    After fixing that issue the Conversation continued:

    Me: Oh while I'm here, (I showed her the over-swell in my arms) Do you think you can give me a script for a bit of Lymphedema Therapy? 

    Sleep Doctor:  Oh my what happened!!!???? You don't have LE in your arms usually? You have it in your breast - right?

    Me: Since the PT, I started to swell a bit and now I can't keep it in control.. It has gone to my upper arms.

    Sleep Doc: No problem, here's your script.

    She is a sweet doc and at least listens to me.

    Now, give me a little help here - I don't have any top tight enough to be compression on the top of my shoulder. My sleeves cover the arms, gaunlets/gloves got the hands - I have a few compression bras and tanks, but they don't cover the top of the shoulder.. I'm allergic to adhesives. and I am working at the fabric store tomorrow morning... Have any ideas???  edit: I did get an appt with LEist after my PT on Monday.

  • Tomboy
    Tomboy Member Posts: 2,700
    edited October 2013

    has anyone tried butchers broom topical creme for lymphedema? I am reading a textbook on the lymphatic system, that my le therapist has loaned me for the weekend. some startling and very interesting information in it. i did find a place in canada that sells it, and they use it in the uk. the book is where i found mention of it. pubmed has articles citing it, i will try to find it again and post a link. 

  • purple32
    purple32 Member Posts: 1,767
    edited May 2013

    kathec

    I have heard of taking B Broom ( not topical)  but personally, I would not do it.   There are  a few ' alternatives' like this for LE, but frankly they have not bene proven effective.  ( We'd alll be using  B Broom if it were that easy  :>(

    Furthermore, some of these things have the potential to be dangerous- ESP. f we have other conditions.


    Please be careful , and remember :  " First, do no harm!"

  • gmafoley
    gmafoley Member Posts: 5,978
    edited May 2013

    Compressed to the teeth for work this morning - Pray its a slow day for me ;-)  

  • purple32
    purple32 Member Posts: 1,767
    edited May 2013

    Sure, hope so gma.

      If not, make it slow- we can only do so much!  I have been in stores and seen fast workers and slow workers...takes all kinds  :>)

  • Tomboy
    Tomboy Member Posts: 2,700
    edited October 2013

    thank you purple32. one of the reasons i am willing to try it, at least once, is that in the textbook and the pubmed article, there were no contraindications, and no adverse effects "reported". i will talk to my onc, who pretty much only adheres to evidence based medicine, and my lymphedema therapist, who is much more open to other healing modalities. I am just glad you even heard about it.... I guess no one has tried it. I have no other comorbidities, and was strong and happy till dx. i am willing to be a guinea pig cause i do dislike this f.up. weak a** big arm. not to mention the cellullar changes that accompany LE. I really would like to politicize LE, (black ribbon, maybe?) because everywhere i go, all women who are familiar with me, grocery store,post office etc, never heard of it as a consequence of bc tx.

  • KittyDog
    KittyDog Member Posts: 656
    edited May 2013

    My mom called me yesterday and asked had I ever herd of using cabbage leaves for LE.  Which I have not herd anybody using it.  I know it helps engorged breast in breast feeding mothers.  So my question anybody here given it a try?  I am willing to go to the store and get some cabbage and saran wrap and see what it does with my legs...who's else is willing to test this theory.  By the way it was a friend of my mom's who had breast cancer and LE also.  Her PT was using this method on her.

  • binney4
    binney4 Member Posts: 1,466
    edited May 2013

    There's a blog called "LymphedemaGirl," written by a woman with primary LE in her leg. She tried the cabbage wrap awhile ago and included pictures:
    http://lymphedemagirl.blogspot.com/2011/05/cabbage-poultice.html
    She was not impressed.

    Desperate bunch, aren't we?Undecided

    Gma, hope your day is going well.
    Gentle hugs,
    Binney

  • purple32
    purple32 Member Posts: 1,767
    edited May 2013

    kathec

    The "official"  symbol for LE is the butterfly.


    I actually looked at b broom long before LE !  Thats because I have icy feet and hands and thought it might be able to help with my circulation.  One thing that did concern  me was this :

    Butcher's broom might speed up the nervous system, increase blood pressure, and make the heart beat fast...

    I have had tachycardia before, and it is not pleasant.  Adding LE to the mix, I wondered if it might have some add'l adverse impact we just dont know enough about yet.  I would love to know if anyone has had success with it.  Until then, buyer beware >

  • Leah_S
    Leah_S Member Posts: 1,929
    edited May 2013

    Sometimes we can be pleasantly surprised. I had to go to the ER (high fever and not much of an immune system). No problem through my 2-day hospitalization with  leg BP. Some nurses asked why but I could tell it wasn't to challenge me but to know why. It was a bit tricky with blood tests at intake. At first they said no problem, they'll access my port (since we all realiized I'd need it for more than just blood tests) but then they said the person who was able to do it wouldn't be available for at least an hour so could they use my at-risk arm? I said OK but no tourniquet (they didn't want to use my foot - don't know why). Let me tell you, that tourniquet makes a difference. Even with pumping my fist we got a bare minimum for 1 vial. Then doc tried an artery and then I suspect they gave up because they took a whole lot more vials when my port was accessed later. When I was on the ward and needed a blood test for PT/PTT there was no problem with using my foot for it (can't do PT/PTT from the port).

    Altogether not too bad except that it was, y'know, the hospital.

    Leah

  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2013

    Cabbage leaves do work if you have sprained ankle, knee, wrist too, wrap around the swollen joint and it will help.  We also use it to relieve a bad sunburn - put it under a tight t-shirt and the burn will be basically gone by morning.  You can see where the cabbage didn't touch, pretty amazing.  It seems to work on inflammation, so that doesn't seem logical that it would work for LE, I'll have to read the lymphedema blog you mentioned above and see what she says.

  • LindaKR
    LindaKR Member Posts: 1,304
    edited May 2013

    ok - I read it, also, we didn't use savoy cabbage for engourgement, sunburn, sprains, we used regular, cheap green cabbage.