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Lymphedema

linpsu's picture
linpsu
Posts: 727
Joined: Mar 2010

Hi all - I have a question to those of you with lymphedema. How did you know you had it? Was it obvious that your arm was completely swollen, or did it develop gradually? My PT that I was seeing post-surgery for arm and shoulder issues said to look for my watch or ring to be tight. I've been having some pain along a nerve in my mastectomy-side arm (I also have cervical spine issues that causes severe pain in my arm) and was feeling around and an area above my elbow on my inner arm seems to be slightly swollen and I am freaking out. But my hand and fingers seem fine. I will definitely call the PT first thing Monday AM, but if this is lymphedema, is it crucial to see someone before Monday? Thanks for any help you can give me. Linda

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Linda -

It's OK to wait until Monday to see your PT. It's hard not to panic if you think you have it ... but Monday is soon enough.

I knew I had a problem when I took a trip to see friends. It was really hot and we walked a lot in the heat and my fingers swelled up (not unusual when you walk in the heat) but they didn't go down. They stayed swollen and they began to really hurt. They were swollen for the next several days. When I came home I sought advice from other BC sisters ... I thought it might be LE ... but it was only in my fingers ... it was through that whole process that I found an LE therapist who confirmed that I did indeed have it.

There are ways you can control it and finding a good therapist is HUGE! I've been taught stretches and exercises that help, I've learned how to do the manual lymph drainage ... I don't know how to wrap ... but I need to learn. But bottom line ... you're OK until Monday.

IF you do indeed have it ... learn the tools necessary, get the sleeves or gloves or gauntlets you need ... don't let it consume your life. It can be controlled!

Much love to you! Keep us posted on what you find out!

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

You might try elevating your arm at heart level or slightly above. I rest mine on the arm of the sofa while watching tv. It's good that your aware of this and taking quick action. Let us know what the docs say on Monday.

hugs,

Linda

linpsu's picture
linpsu
Posts: 727
Joined: Mar 2010

I have a lightweight lymphedema sleeve that the PT gave me for flying that I wore 2 weeks ago. Should I put that on for now?

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

You can wear it during the day but don't wear it at night! Do you have a gauntlet or a glove? The only thing with wearing it without a gauntlet or glove, is it may cause fluid build-up in your hand or fingers.

Try it. If you see swelling in your hand and fingers don't do it anymore and wait until Monday.

Do elevate ... that can help swelling.

Also, drink LOTS of water! The protein molecules that lymph fluid is made up of ... bond with the water and can move it out of your system.

Eating salt and drinking alcohol can make the swelling worse too.

The weather can affect it too. Dramatic temperature swings that happen in the spring ... low pressure systems ... all of that can LE worse.

Drinking lots of water, elevating your arm, staying away from salt and alcohol are simple things you can do that can help.

Try to relax ... I know it's hard ... but Monday is only a couple of days away.

Blessings, love and peace to you!
xo

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

What causes one person to swell ... may not another ... but for me, another trigger is caffeine.

Drink the water but stay away from caffeine. Also along with salt ... if I eat out and if there is MSG in the food ... it makes me swell. Have you eaten any Chinese food or anything that might have had MSG in it?

I'm in the part of the country that has been hammered by rain and storms ... the weather has really made my LE worse the last couple of weeks.

Maybe that's true with you? xo

New Flower
Posts: 4100
Joined: Aug 2009

Dawne and Linda gave you good advices.
Everybody is different. My fingers were fine for two years while I had swollen arm, After changing medication fingers became problematic too.Monday is fine. You can wear your sleeve during daytime.
I am glad Dawne that you have mentioned alcohol. My therapist never mentioned it, I have not read about alcohol in the literature too.
I found it myself hard way when I celebrated completion of my Chemo treatment. I almost do not drink anymore.
Hugs,
New Flower

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

HI Linda, I completely understand the freaking out bit, I did the same thing. Some great advice has been given and I learned some from this post as well. I think you should wear your sleeve (but not to bed, as stated) and if you have a glove use that as well. My therapist will wrap mine for me when it starts getting bad but the best thing for me is to "baby" that arm. Try not to use it too much, there are also some exercise you can do that will get your other lymph nodes pumping in order to help clear that arm out. Another thing that works for me is to hold my arm up (like your raising to ask a question in school) and lightly, I'm mean very lightly massage it from your hand downward as if you are trying to get any fluid to run back out of your arm. It's scary, I know, but you have a good handle on it and Monday is fine to see your PT, try to relax and soon you will have it under control. Big Hugs!!
Miles of Love,
Kari

Rague
Posts: 3367
Joined: Aug 2009

Get an appt. with a Certified Lymphedemologist.

I have a 'fair bit' of issues - more than most. The first I remember was a bit of puffyness on hand back but elbow and upper arm were probably what I really noticed the most first. That was over a year ago. IF you do develope it - it's not the end of life. There are many 'things' that can be used to control/manage it - massage, day sleeves and gloves/gauntlets, night sleeves, and MLD machines. (If you think that there is swelling - take measurements and compare to other arm - your dominate hand side will usually be a bit larger than the non-dominate side anyway).

You mentioned having a light compression sleeve - remember that you should not use it at night - there are night sleeves that work on different principles. Active (day) vs Passive (night). Also the level of edema does not mean that you need a certain level compression. I have fairly big issues but heavy compression only makes it MUCH worse - light do the most but that is just me. It's over a year since starting down this road and we're still tring to find the right glove for me (new sleeve is great). I have weird hands - middle fingers are somewhat webbed so getting a glove that is really comfortable is a problem - new one had to be sent back for modification as it was worse than the last ones (all my garments are custom made).

"Don't Freak Out - Find Out" see a Certified Lymphedemologist.

Susan

cavediver's picture
cavediver
Posts: 607
Joined: Apr 2010

just read your post, but agree with all that Monday will be fine to get it checked out. I first had some swelling in one finger.....it took a couple more months until there was some obvious swelling in the arm. It is good to address lymphedema in the early stages to prevent it from getting worse or out of control. Finding a good therapist that is knowledgeable in lymphedema is crucial to success in managing it. I had gone to two who were 'certified'....but not well versed in various treatments, or did not have that many patients with issue to be up to date etc. I finally got with someone who got it under control for me. But.... it is different for all of us.......some of us need to use the pumps in addition to manual massage and sleeves and gloves....others may only need to do manual massage. It is all doable.......... and as much as I would prefer not to have this issue...it is what it is, and we learn how to manage it. Good luck and keep us posted....
hugs to you..........

disneyfan2008
Posts: 5490
Joined: Oct 2010

But I KNOW each time (except last time-I think they forgot) my Rad. oncologist visit they always measure both arms! I assume looking for the start of lymp.

I HOPE you get some helpful replies..

Denise

Jean 0609's picture
Jean 0609
Posts: 2347
Joined: Jun 2010

How did you make out? Actually, I went to a PT a few weeks after we had lunch together. She said that I had a very slight case of lymphedema and gave me a prescription for a compression sleeve that I wore every day for a month. When I went back, my arm was actually smaller than my other arm. I haven't worn it much since then though, even though I'm supposed to.

xoxo,
Jean

linpsu's picture
linpsu
Posts: 727
Joined: Mar 2010

I couldn't get into see the PT who is a specialist in lymphedema until next Tuesday! Luckily the swelling didn't get any worse - it is at my inner elbow. I am so thankful for all of the helpful hints from everyone here. It occured to me that I did something really stupid - I've been SO careful of not having my blood pressure taken on that arm, or bloodwork, or carry a purse or anything heavy - but 2 weeks ago I had an EMG to check for nerve damage in that arm due to a neck injury previously. I saw that Heatherbelle had an EMG also. Anyway, they put electrodes all over your arm and send shocks through you to check for nerve damage, and then they stick all these needles in you. I can't believe it didn't occur to me to tell them NOT TO DO THAT!!! So I'm wondering if that test had anything to do with this LD starting? If so, I'm really mad at myself for being so stupid.
Have fun at the beach! Linda

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

I have very mild lymphedema. It's so easy for that to happen -letting medical procedures be done on that arm. I was so good about blood draws and blood pressure too. Then, I went to get a flu shot and without thinking got it in my left (cancer side) arm. It didn't occur to me to tell the nurse - "Not that arm!" either. Sigh. That was 2 1/2 years ago. No matter what, you will be just fine. I think lymphedema becomes less of a worry and more just a thing to be vigilant about the farther our from diagnosis we become. xoxoxox Lynn

RE's picture
RE
Posts: 4630
Joined: Feb 2004

Hi Linda,

I have posted several pages of information on lymphedema in the PINKS page that my onco gave me when I first was dx with lymphedema, hope it helps.

RE

smalldoggroomer's picture
smalldoggroomer
Posts: 1181
Joined: May 2010

I have it and mine isn't bad. I noticed swelling just above the elbow inside of arm too.
I went to therapy and she showed me how to do the messages and exercises and it never got any worse just stayed the same. It don't bother me at all. I do the exercises and messages every day and don't even need a sleeve. She also told me that you can get this in just one part of you arm it does not have to involve the whole arm. Good luck and don't worry I am sure you will be fine. Take care Kay

mruczko
Posts: 110
Joined: Jun 2011

Hi:
I am new to this forum. Had surgery last May, followed by radiation, cancer was on the left. I had 18 lymph nodes removed. Noticed the last couple of weeks that my left upper arm seems to be slightly larger. A women's boutique in the area sells compression sleeves and garments. I had her take measurements and the upper arm is 1 cm larger than the right (2.5 cm = 1 inch). How worried should I be? I am an old lady and the only lymph edema specialist is a difficult drive from my home. Thought about making an appointment with my internist to see what he suggests. I am doing everything suggested in the posts, plus very careful exercises. Even though Houston is a large city, it is woofully short on PT's, massage therapists, etc. specializing in lymph edema. I don't want anyone to touch me unless they know what they are doing. Should I get a sleeve myself and wear it during the day? Any suggestions would be appreciated.
Hugs, Marlene

mamolady's picture
mamolady
Posts: 795
Joined: May 2011

Marlene, It would probably be to your benefit to make the drive. Your internist may not be well versed in lymph edema, most aren't. If your arm is swelling, you will want to have it well under control. If it gets out of control it may be something that will bother you for a very long time.
Maybe you can take a friend or your husband and make a day of it if there is something else nearby.

Cindy

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