VISIBLE SIGNS OF LYMPHEDEMA - A PICTORIAL

Laura, thank you for posting the picture of cording -- it's hard to recognize if you haven't seen it. It's also sometimes impossible to see if you're a bit overweight, but the "cords" can usually be felt if you know how to find them. Here are more cording pictures and information:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm

BMD, weight changes do make a re-measure and new garments necessary. Wearing garments that don't fit properly can have the same effect as a blood pressure cuff. Check the fit with a lymphedema therapist or an experienced fitter before wearing them.

Be well!
Binney

this is so helpful for so many of us who aren't sure.  This is great!!!

Sherry, I'm so sorry! Kind of a lot to get your head around, isn't it? Please know it gets easier.

Here's a page about lymphedema garments that will show you what they look like and explain a bit about how they should fit and feel:

http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

The garments are flexible, and you will be able to bend at all your joints. But they're tight and frankly they feel weird, especially at first. We just aren't used to being squeezed all up and down our arm and hand.

You don't mention therapy, so I'm wondering if you've been seeing a therapist daily or several times a week for the past weeks? Have you learned self-Manual Lymph Drainage massage and self-wrapping with layered short-stretch bandages? The garments cannot reduce swelling, they can only help maintain the reduction that comes from intensive lymphedema therapy. If that hasn't happened for you, do ask why not before getting fitted for garments. The following information page has sections to click on about Manual Lymph Drainage and Wrapping/Bandaging that can help explain the process.

http://www.stepup-speakout.org/treatments_for_lymphedema.htm

Sorry you had to join us "swell" Sisters, but glad you found us. Please keep us posted!

Be well!
Binney

I had pain last Sunday so I called the oncologist and they said I could come in and see the PA. She was the one who wrote the script for the sleeve, she said some times we do the therapy but we're going to leave that up to the oncologist when you come back on June 11th for you regular appointment. So I'm supposed to wear this for the next 2 weeks and see what the dr. says.

Thanks binney and moogie.

I also woke this morning with itching on the same arm, is that a symptom  of lymphedema?

I haven't had any more itching since Sunday morning but I keep watching for other stuff.

I was also told to stop being on the computer unless I could learn left handed, is that true?

I was told stop crocheting and doing anything that makes the arm just keep moving, like washing dishes, folding clothes, mopping, anything I HAVE to do I now have to stop.I have nobody to take over all my stuff plus they have to do their stuff and jobs too.

I'm going to call the dr. office tomorrow morning and see what they have to say about me not going for my fitting appointment. The PA did say get it asap.

Is a sleeve and glove covered under insurances?

This whole thing is so confusing to me.

Sherry, I woke up in the middle of the night thinking about you and realized I hadn't answered your question about typing and crocheting.

The fact is I use a left-hand-only keypad (had to relearn how to type!) and I've taken up the Knifty-Knitter in lieu of the crocheting I loved. But THAT'S NOT USUAL. What happened to me should not happen to any woman who develops lymphedema. I had some truncal lymphedema to start with. My doctors took a "wait-and-see" approach instead of sending me for prompt treatment. When I finally got a referral, it was to an inept therapist who had only a three-day training in lymphedema therapy (I didn't know any better). Far from reducing my truncal lymphedema, she was responsible for it's spreading to my right arm and hand. Still without adequate help, it eventually developed in my left hand and arm as well.

Recent research shows that prompt treatment can prevent progression (not to mention reducing the risk of serious infection). I wish I had known that, because if it had not progressed I would not have lost the ability to type and crochet with my right hand. Yours does NOT need to get to that point. Get GOOD help SOON.

And by the way, I can stil do dishes, fold clothes, and mop . Too bad!

While you wait for help with your lymphedema, keep your arm elevated as much as possible (even on pillows at night), drink PLENTY of water, and do some gentle deep abdominal breathing from time to time.

Anxious to hear how it went today,
Binney

hi binney, thanks for getting back to me.  I do elevate and stupidly got on a massage machine forgetting duh that I have truncal and before I knew it my Le was back in myforearm and hand.  It was mainly upper arm and baggy elbow with truncal too.  I am so mad at myself, I know better.  I was trying to feel better and I wrecked myself for a week.  I had to resort to my night sleeve during day, Feels like a wing and if I take off I will only go in circles...lol  

love ya

Thanks so much for the photos - it is always a big help to find out that we are not alone in all of this. And you are so right that we all are a bit different. My hand is my signal for how the lymphedema is doing. If I can see the tendons then the swelling is down all up my arm. At one point I got annoyed about having to look after this for the rest of my life. Then I noticed that the things that caused this, the surgery and radiation, are the things that have given me the rest of my life. It's not that bad a trade off.

Since I had a single mastectomy and am not, umm, tiny, it is as a public service that I wear a bra and false boob. One thing I did recently was change to a sports bra which I wear with a light weight knit foob. I think that has made a positive difference to my lymphedema.

Thanks again for your successful efforts to help us all.

This is sort of on this subject and again not...Lymphedema after breast surgery is a diagnosis for long term disability. My oncologist filled out all the papers and got me on long term disability. Was wondering how i was going to work with decreased ability to use my right arm and hand...Mine is very visable. and getting worse as time progresses...i wear the sleeve and glove daily.

angela colvin

A sleeve and glove does not reduce the limb, it only contains swelling for a short time.  You need to apply short stretch bandages to reduce the size.  After reduction, they you can wear the sleeve and glove, but you should wrap for reduction.

Hi Ladies, I have a question for you all.  Have any of you ever had a steroid injection?  If so how long did it help keep the LE down.  I know I cant keep getting them. It was a one time deal for a bad infection?  I thought I had heard it will help for about 6 weeks.

Kira the shot was for excema that was out of controll  i was told that it may help reduce some swelling from the le also but somewone else said it woulde only last 6 weeks

Buddy, makes sense for the eczema--which you don't' want out of control with LE--did it help?

Kira

Hello:

I've learned a lot by reading all of the posts. The pictures are amazing!  Thanks so much for going to all of that trouble!!

I am wondering if I have a problem with lymphedema.  I had a BMX with immediate recon (SGAP tissue flap) with 4 nodes removed on my right side, about 6 weeks ago.  My right arm has always been a little sore and stiff.  Initially, I thought it was from the surgery, and it may well be, mostly because there are no visible signs of swelling.  Now, I'm wondering if there isn't some small amount of swelling going on and it should be checked out by a LE therapist? 

I'm not back to exercising just yet.  I was thinking that the soreness/stiffness would disappear once I start running again and get the blood flowing more through my right arm.  Does that seem to help - exercise?  Should I wait to see a therapist until I'm back running again to see if it makes a difference?

Thanks!