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

LindaKR

hugz4u - well said !!!!!!!

hugz4u

Purple. Opps...I made a mistake. You girl DOES have good hands.  That is.... GOOD HANDS to REACH OUT for YOUR MONEY!

EEKS, I still am hot with anger. grrrrrrrrrr. 

PS. I am not usually this hot under the collar. I'm going to go do a Tai Chi breather before I explode!

proudtospin

I am not sure where but at one point I saw a sight that offered training for folks, it is not certified but suggested only for folks to do on themselfs.  Wish I could remember were but I found it on line.  I thought maybe I could get certified to become certified myself.  Do some googling and you may find it.  There is a cost but it might end up better.

Yeah, my old massage person told me she tried to learn the gentle touch for LE but she couldn't get the hang of it after years of deep tissue massage so do be careful

mags20487

insensitivity and working with those with medical issues just do not go together at all

I am starting back at therapy tomorrow. I have some lingering issues with the nerves in my right arm and thumb and the LE is back full on in the left arm.  I have been wearing my sleeve and glove pretty faithfully but I just don't do MLD like I should.    You would think I would remember to do as It really does affect my daily life

Maggie

Anonymous

Purple, not sure where in MA you are, but perhaps Kira or her therapist could recommend someone? She is in RI but has ties to MA.




Geez, MLD is learned best by being demonstrated ON YOU so you know what it feels and looks like. Then the therapist watches you try it and corrects for speed, pressure, direction, etc. Just remembering the sequence can be confusing, especially for the arm. I feel like Hugz, a bit infuriated about the whole thing, especially her charging you!

purple32

Thanks, hugz et al,

Breathe!

I called my massage therapist and she was  also upset!
She  said she actually does know quite a bit about the lymphatic system. She explained that she  studied ( on her own) because  drs., unecessarily removed 4 of her lymph nodes several yrs back! <long story >  She said that more recently her DR warned her that she could be at risk for LE.

In the meantime, some acquaintance she knew somehow    could not find good LE care  &  knew of her studies and asked for her help.  She ended up doing the LE drainage ( primary/ legs ) for her  as well as bandaging for the woman! I know, crazy, huh ?

In any case, she began to ask me if you first cleared near the clavicle / terminus in light stationary circles, then neck , then yadyadyadyda  through several steps of MLD  ...   she seemed spot on!
She said if I was willing to bring all my papers and the recent book I got ( Binney suggested I  order ) that she would be very happy to try to help me.  She made it quite clear she was not certified or  even qualified in any real way.  But, willing.

She is available as soon as next week and is willing to spend time with me learning.

I asked what she would charge and she asked my copay.  ( 20)  She said that would be fine.  She's sure not making money on me!

Yes, I'll be careful.

thx for all the support.

LindaKR

Purple - I have a really good massage therapist and she said that sometimes at the massage continuing education seminars they offer training in LE massage, she tried to get in at the last one, but it was full  Have you ever had a Thai massage - it's like passive yoga and it's the best massage I've ever had - I feel energized and it lowers my pain level immediately!  That is so awesome that your knows stuff already.  Oh, and another thing, I was told not to have any deep tissue massage on my BC/LE quadrant, front or back (since I have swelling on my back too). 

Have fun!

purple32

No Linda, I have never had a  Thai! I'll have to look that one up. 

I was into massage though and with my icy cold circulation and low BP, I was known to indulge in deep tissue hot stone massage now and then
( never again  :>)

proudtospin

I used to have deep tissue massage on my legs pre LE days, it was wonderful but not at all recomended likely for anyone with LE...in fact my massage lady, has on her own said, no way for me anymore

carol57

Thank all of you for mentioning the massage precaution. It's recommended that we avoid all massage on the quadrant where we have LE, and so if we have arm LE, that includes upper torso front and back, whether we have truncal LE or not.  I think any kind of massage invites trouble, except MLD, which isn't really massage; that's just a word we use to describe the gentle strokes.  I'm basing this on a long discussion with a CLT-LANA who came to a workshop I attended. That discussion burst my bubble big time, as DH had for years given me a birthday gift certificate for a wonderful massage at a local spa. Somehow skipping one full side of the back, and the arm and shoulder, makes me want to skip the whole experience. One more life concession to LE!

purple32

I will second  (or third ) that warning on massage. I take it very seriously.  I had a  chair massage shortly before I noticed the swelling in my hand, and I have always wondered ...

I really didn't know at the time of course.

hugz4u

Purple. Isn't it nice that you held out for someone that is willing to learn MLD and a desent price to! Northwest Lymhedema center in Seattle has some good info for your massage girl. There 50 dollar dvd is very educational. Wouldn't it be awesome if she took LE courses and can help herself too! Make sure she has a light hand, just enough to move the skin. NO heavy massage at all.

purple32

Thanks for that info, hugz!  That would be great.
I did mention the light touch, and she said she recalled ' the kitten stroke' associated with LE care. I am feeling okay about her.

I'll be careful .

purple32

Carol

The word really needs to get out!

I was just on the 'older ppl with more sense' thread and had to burst their bubbles as several are talking about getting massages. I am so afraid of " one of us "  ( sisters here on bc.org) getting a LE flare because they didnt get the proper info.  LE is NOT a thread most ppl without LE symptoms visit .

I know it was the last thread I wanted to come to-  but I knew somehow in my gut that if I posted here , I would get replies, and I did  ...which confirmed my dx and prompted me to seek tx. 

carol57

Purple, I don't know that massages are ruled out for those who don't have a lymphedema diagnosis.  I never heard it's a problem in the at-risk group, although of course, if a person has LE and doesn't realize it, the massage could be a flare trigger, I suppose.  I am sad to know that some women have arm aches and heaviness and tingling and don't have a clue that it's LE, and don't find out until it progresses to the point of visible swelling, prompting them to seek help. And as we all know, getting an actual diagnosis can be challenging even when there are visible symptoms.  Can you post something in that forum about the signs of early LE, along with your suggestion that massage and LE are not a good combination?

GmaFoley

 I am sad to know that some women have arm aches and heaviness and tingling and don't have a clue that it's LE

Yes Carol, I was one of them - a year of pain and ache in my breast and upper arms after radiation.. All my doctors said was that it would pass and it wasn't LE... At that time my question was, "LE?? what the heck is that?"  Well, thanks to GrannyDukes, who referred me here and I found out... We have a new BC support group going in town and not one person knew anything about the risks of LE until I shared with them... They know now and found out that 2 of them have LE and didn't know it... That is why it is our responsibility to get the word out in the community.  I feel I did a small part in passing some knowledge on.. ok off my soupbox...

The bad flu hit me.. I have been down for almost 2 weeks... ended up with bronchitis and sinus infections... it hurt to wear the sleeves and I couldn't do my breathing without coughing.. Today is my first day using my sleeves again and I have a long awaited visit to my LE T.  

Oh Binney, I have my book finally!  It got tied up in Christmas mail... Going to share it with my LET too!  He loves when you all tell me something he doesn't already have or know.  

dassi52

Finally,I got my Farrow glove in my size after 4 months of bandaging, but it looks as if even that light pressure is too much for the painful spot on my hand. My LPT allowed me to take it home and try it for a while (just protect it from dirt with a latex glove over it) but after about 1 hour my spot started already hurting. I'm trying somemore tomorrow till my appt on Tuesday, but I have the strong feeling that I will need custom. That means waiting again! I love the thin fabric of the Farrow but what can I do. This evening I was baking and I couldn't deal with bandages etc, so you can imagine what my hand looked like after a few hours. Now I am back to being a mummy again. I have been very bad about MLD - my days are so busy and I really must make it part of my routine. I think the reason that I am not so careful is, I believe, that it doesn't really seem to affect my LE. The LPT only showed general MLD but nothing especially for my hand. I am going to insist that she works with me next visit. I don't have the luxury to change tosomeone else. There are too few LPTs here, and I don't have a choice. She is nice and considered a top LPT but maybe she thinks mine is so mild that I don't need that much. I should have taken a picture of my hand this evening and she would have realized that those fingers can swell very well. I also ordered that book, but who knows how long it'll take with snailmail to Israel. (Surprisingly, a digiflex I ordered came within 6 days - through ebay. Isn't that amazing!!)

OK I got that off my chest. How many times can I complain to my family. Only you ladies understand how frustrated I am to still be wrapping.

purple32

 although of course, if a person has LE and doesn't realize it, the massage could be a flare trigger, I suppose.  I

YES!

That's precisely the issue, Carol  - you understand perfectly! 

And when I had  early and unrecognized symptoms in the arm , it was when I most wanted a massage. At that point , I was clueless that my arm might have LE  or that massage could be an issue at all.

purple32

Now I am back to being a mummy again. I have been very bad about MLD - my days are so busy and I really must make it part of my routine

dassi

Come join our LE exercise thread where you post compliance - we post if we wore our garments, did MLD, Lebed  etc ... C'mon, we'll keep you honest!

And yes, try to get her to work on your hand.

I have  small pocket of fluid in mine, but my therapist was useless. 
I did caLL ANOTHER TODAY, AND THO' SHE WAS ONLINE AS vODDER TRAINED.  (oops   sorry caps) she said she no longer does it.  She gave me the name of a woman who got ' so big;' she has videos on the internet, teaches Viodder but  no longer does hands on  :>  (   However, she also gave me the name of a man who is NOT esp LE  CERTIFIED , but she claims he is the greatest OT she knows , and is well versed in LE  tx.

I have  a voicemail in to him as I am exploring other options as well ( my massage therapist who will learn MLD..)

I feel as you do about the MLD, but I am doing it AM and PM.  I dont ever want to look back and say :" I made that worse ."

DON'T GIVE UP because this thing is not going anywhere !

Cindyl

Ack.  I'm having a flare.  Worse than I've been since all this started.  My trunk, my arm and my hand are all swollen.  I've been wearing my sleeve, and trying to do all the things I'm supposed to do, but I admit I haven't been walking as much as I usually do.  The other thing I did, which I'm pretty sure was a mistake... I wore a fleece sweatshirt over my sleeve.  I knew the sleeve was catching on the shirt but it didn't seem like a big deal until late in the day.  Got my sleeve off before I had to cut it off, going to walk the dog then put my arm up and hope for the best.

purple32

 I wore a fleece sweatshirt over my sleeve

Hmmm...I never would have seen that as an issue!

So sorry Cindyl.  I hope lots of water , elevation and rest wil help.

IF SO, maybe  a short walk later will do you good. We do know our own bodies !

Get ' better' soon!

Cindyl

I could feel it tugging. Not a lot but pursistantly. I don't know if that caused the swelling, but it's the only really different thing I did.

duckyb1

Never heard that about body massage......knew about the LE arm, but that was it.......none of my therapists ever told me I could not have a massage....just no blood draws, and no blood pressure............I too have a couple gift cards........so much for that.....will have to google this to see if that is right.......thanks for the info.

dassi52

Thanks, Purple, for that encouragement. Especially that last line about LE being here to stay. Sometimes it is my wishful thinking that I could go around w/o anything unless I do heavy physical working. Who am I kidding? (myself!) Just doing dishes and a few pots and the fingers are swollen. 

purple32

Especially that last line about LE being here to stay. Sometimes it is my wishful thinking...

I know it all too well, dassi!

Take Care!

nibbana

Here's a good article on when you have to have a serious conversation with your LET. It's an article on pelvic PT, which takes a lot of specialized training. It covers some of the issues we have with LE, being a specialty.

It touches on patients who run around the Internet getting information, which we all do, and how to bring issues into the conversation. Such as, if you hear of others who are doing a certain thing and having success. "Then why aren't we doing this???"

http://www.pelvicpainrehab.com/blog/2012/07/you-know-more-than-your-pt-what-do-you-do/

Binney4

Wow, Nibbana, that article has some really good tips. If you can make your way through them (they're dense reading!), the NLN Position Papers on Treatment, which you can copy off, make a good talking points to bring along when you talk to your therapist. You can point out specific treatment recommendations and ask calmly why those are not being used.

Of course, a plate of fresh brownies offered before this talk doesn't hurt either...
Binney

proudtospin

brownies will make everthing better....think I need a plate of them myself....some days, weightwatchers be darned!

dassi52

I agree, although by me it's bittersweet chocolate. How about CA standing for Chocoholics Anonymous?  I am trying to wean myself off from that stuff for the umptieth time. The best I have ever done was about 6 months! 

You won't believe this but today I met an acquaintance who saw my LE hand all bandaged up and wanted to know what had happened. I knew that she herself had had BC so I said LE, that's something you should do your best to prevent from happening to you. And guess what? She had never heard of LE before. Her dumb surgeon who only did sentinel, never warned her. This is a very intelligent lady, but she was shocked to hear that I got LE 22 years after my first surgery. I promised to email her whatever info I have with prominent in there the SUSO website. I just can't believe how clueless (me included) we all are because there is a lack of information for BC patients. I am so glad there is a forum to provide support and knowledge. If I can prevent just one case of LE, I'll be thrilled! 

proudtospin

gee I started working with a new trainer at my gym who claims to be the cancer guy, as in he is working on developing a program of excercise for cancer survivors for the gym( which just happens to be hooked to a local hospital with a big cancer center!)

he definitely has been advised that central NJ needs more LE therapist!  and helping me to prevent my LE from getting out of wack