Lymphodema

Jacque101

any one else with this problem after chemo and radiation? i have posted a pic of my arm wrap on my expressions page. i have therapy 4 times a week and they rewrap it each time.

carkris

lots of people do and they
lots of people do and they will post!

Rague

Lymphedema is nasty - for some of us!
As I undestand it - the initial wrapping is to get arm/hand to as close to 'normal' as possible to get meassurements for day sleeves and gloves and night sleeves (yes they are different). (You can do wraps yourself while waiting for sleeves and gloves.) Some are lucky and 'fit' standard garments - I don't so mine are all custom - takes a bit longer to gt in. Even with doing all I could, I still had a lot of edema not only in hand/arm but also in shoulder, back, underarm, and across chest. Not at all what most experience. Even with doing all I could still had big issues and VA got me a Flexi-Touch MLD (Mannual Lymphatic Drainage) machine (EXPENSIVE). I use the machine an hour a day and it is definately helping - will never be back to pre-surgery though.

There are so many different options that our bodies will tell us what is 'right' for it. Heavy compression only makes mine worse - light compression works much beter for me.

Not saying this to scare you - but to show that there are options/treatments for everything we have to meet. Some of us do have big problems but most do not!

Susan

There is at least one other person 'here' who has the same unit I have but she doesn't have the hand/arm issues so she doesn't use all the part of the garments that I do. There is someone else who has a different brand MLD.

Dawne.Hope

I have it
Dear Jacque101 - I have lymphedema and I didn't have chemo or radiation but it sucks! I HATE IT! I've found the following websites very helpful. One of the things I hate most about LE is that it is not a one answer fits all. We're all different, our bodies are different, and what causes us to flair is different. I have it in my fingers on both hands. My left arm feels 'full' but there is no noticeable swelling. Less compression is better for me than more. I wear gloves and sleeves every day, do the manual lymph drainage 2x a day, and the exercises my LE OT prescribed for me 2x day. I don't know how to wrap, although I'd like to know how because I swell at night. I find if sleep on my sides the swelling is worse. If I sleep with hands up on pillows it is better, but who really can sleep that way? I try. I've found some online videos helpful to add to my MLD. The step up/speak out site has been a lifesaver for me just to know that there are other women out there who know.

I hate it that you to deal with LE too. Having bc cancer was terrible. Having LE is a constant reminder of the bc ... how are we supposed to get on with our lives when we have to deal with it? GRRRRRR! I hate it! That's my lament. Sorry I'm not more encouraging ... others will be! Here are the links. I really have found them helpful. xo

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

http://www.jovipak.com/video.shtml

http://www.nwlymphedemacenter.org/vid_mngmntA.php

Rague

Dawne.Hope said:

I have it
Dear Jacque101 - I have lymphedema and I didn't have chemo or radiation but it sucks! I HATE IT! I've found the following websites very helpful. One of the things I hate most about LE is that it is not a one answer fits all. We're all different, our bodies are different, and what causes us to flair is different. I have it in my fingers on both hands. My left arm feels 'full' but there is no noticeable swelling. Less compression is better for me than more. I wear gloves and sleeves every day, do the manual lymph drainage 2x a day, and the exercises my LE OT prescribed for me 2x day. I don't know how to wrap, although I'd like to know how because I swell at night. I find if sleep on my sides the swelling is worse. If I sleep with hands up on pillows it is better, but who really can sleep that way? I try. I've found some online videos helpful to add to my MLD. The step up/speak out site has been a lifesaver for me just to know that there are other women out there who know.

I hate it that you to deal with LE too. Having bc cancer was terrible. Having LE is a constant reminder of the bc ... how are we supposed to get on with our lives when we have to deal with it? GRRRRRR! I hate it! That's my lament. Sorry I'm not more encouraging ... others will be! Here are the links. I really have found them helpful. xo

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

http://www.jovipak.com/video.shtml

http://www.nwlymphedemacenter.org/vid_mngmntA.php

Swelling at night = night sleeve
If you're swelling at night then you should ask you Lymphedemologist about a night sleeve. Mine is a Tribute by www.solarismed.com. (there are other manufacturers) Much bulkier than day sleeves and gloves but not as bulky as wraps - plus you just pull them on and off. For me to wrap takes about 20 minutes - to pull on night sleeve is less than a minute - well some days take a little more time if I need to add my over sleeve(s) that night

Katz77

I hope you feel better
Jacque, I dont know what makes us sooo different on this. I had bilat radial mastectomies. On the left side I had around 30 nodes removed and 28 were cancerous. I have very little edema, just around the elbow area.
I elevate at night, while watching t.v. etc... Sometimes if I sit at computer to long or have a long work day I'll swell in that area. So when Im puffy, I'll elevate, wear my compression stocking and squeeze my squishy ball. Thats what helps me. I was told it different with each person. Sometimes no swelling and years later it can be worse. You know some people have lymphedema that havent even had cancer or treatments. Just a bad lymphic system. Maybe some therapy. Please talk with your docs so they can direct you in the right direction.
Take care and I hope you feel better., katz

New Flower

Katz77 said:

I hope you feel better
Jacque, I dont know what makes us sooo different on this. I had bilat radial mastectomies. On the left side I had around 30 nodes removed and 28 were cancerous. I have very little edema, just around the elbow area.
I elevate at night, while watching t.v. etc... Sometimes if I sit at computer to long or have a long work day I'll swell in that area. So when Im puffy, I'll elevate, wear my compression stocking and squeeze my squishy ball. Thats what helps me. I was told it different with each person. Sometimes no swelling and years later it can be worse. You know some people have lymphedema that havent even had cancer or treatments. Just a bad lymphic system. Maybe some therapy. Please talk with your docs so they can direct you in the right direction.
Take care and I hope you feel better., katz

My appointment is schedule for tommow
I am going to wrapped tomorrow at 8am then go to work from there. Fun especially I need to use hands for my work. It is going to look very similar, always fricks everybody around.
I have been uSing night sleeve for 18 months and it needs to be replace. Every day stretches, exercises, kinesio tape, everything what is recommended I have done. I can say I can live with lymphedema it takes all of my free time...
Sorry my friend, you are not alone. I hope you can move to sleeve and glove very soon.
Hugs
New Flower

Dawne.Hope

Rague said:

Swelling at night = night sleeve
If you're swelling at night then you should ask you Lymphedemologist about a night sleeve. Mine is a Tribute by www.solarismed.com. (there are other manufacturers) Much bulkier than day sleeves and gloves but not as bulky as wraps - plus you just pull them on and off. For me to wrap takes about 20 minutes - to pull on night sleeve is less than a minute - well some days take a little more time if I need to add my over sleeve(s) that night

night sleeves
Rague -

Aren't the night sleeves expensive? I don't have insurance right now. I only saw my therapist for a month, she wanted to see more for another month, but I was dropped by my insurance.

I've heard about the kinesio taping, it sounds cool, and I know it can really help. I'm going to try to get back in to see the therapist ... see if they'll let me pay on a scale ... there are tools that I want to learn so I can fight this thing with everything I've got. Did I say I hated it?!

missrenee

New Flower said:

My appointment is schedule for tommow
I am going to wrapped tomorrow at 8am then go to work from there. Fun especially I need to use hands for my work. It is going to look very similar, always fricks everybody around.
I have been uSing night sleeve for 18 months and it needs to be replace. Every day stretches, exercises, kinesio tape, everything what is recommended I have done. I can say I can live with lymphedema it takes all of my free time...
Sorry my friend, you are not alone. I hope you can move to sleeve and glove very soon.
Hugs
New Flower

Yes, every patient is different and lymphedema varies
in degrees of severity. I had 23 nodes removed on the left side with my lumpectomy (10+). Sometimes I have tightness in the arm, axillary region but usually not swelling. I do have pain and swelling in my left breast, and down the left side of my rib cage. I've done therapy with a certified lymphedema specialist. She taught my husband how to do Kinesio taping on various areas to move the fluid to nodes that are healthy. It's very easy and very effective. I have a custom sleeve and glove for flying. I also do range of motion type exercises. Like Susan, I also was lucky enough to get a Flexi-Touch machine in my home. On bad days, I use it and it works well.

There are many therapies to treat lymphedema. None will cure it. I found that the hardest thing was initially finding a qualified certified lymph. specialist who could help me--they are far and in between. I had to wait over 6 months for my initial appointment. It was worth the wait. A person who is not qualified to treat lymphedema can do more harm than good.
Good luck with this.

Hugs, Renee

Rague

Dawne.Hope said:

night sleeves
Rague -

Aren't the night sleeves expensive? I don't have insurance right now. I only saw my therapist for a month, she wanted to see more for another month, but I was dropped by my insurance.

I've heard about the kinesio taping, it sounds cool, and I know it can really help. I'm going to try to get back in to see the therapist ... see if they'll let me pay on a scale ... there are tools that I want to learn so I can fight this thing with everything I've got. Did I say I hated it?!

I don't know the cost.
Honestly I don't have a clue about the cost of any of my sleeves/gloves. I am fortunate in that my care is through VA - so I never see the costs - just my co-pay (I pay $9.00 a month for Femara) on somethings because it isn't 'Service Conected' and Hubby makes too much for everything to be covered. My sleeves and gloves are completely covered so I just call K. (Certified Lymphedemologist) every 6 - 9 months and he orders 3 new sleeves and gloves - I'm built a bit strange - 'wonky' elbows and slightly webbed middle fingers so mine are custom made. I don't knows if night sleeves come in 'standard' sizes or not - again mine is custom.

You might call some of your local medical supply businesses and talk to them.

Susan

Rague

missrenee said:

Yes, every patient is different and lymphedema varies
in degrees of severity. I had 23 nodes removed on the left side with my lumpectomy (10+). Sometimes I have tightness in the arm, axillary region but usually not swelling. I do have pain and swelling in my left breast, and down the left side of my rib cage. I've done therapy with a certified lymphedema specialist. She taught my husband how to do Kinesio taping on various areas to move the fluid to nodes that are healthy. It's very easy and very effective. I have a custom sleeve and glove for flying. I also do range of motion type exercises. Like Susan, I also was lucky enough to get a Flexi-Touch machine in my home. On bad days, I use it and it works well.

There are many therapies to treat lymphedema. None will cure it. I found that the hardest thing was initially finding a qualified certified lymph. specialist who could help me--they are far and in between. I had to wait over 6 months for my initial appointment. It was worth the wait. A person who is not qualified to treat lymphedema can do more harm than good.
Good luck with this.

Hugs, Renee

Certified Lymphedemologist
I have to agree that you do need to have a certified lymphedemologist - others can do more harm than good. That said - remember that not all certified Lymphedemologist have the same knowledge/experience with all types/causes of it. My Guy is a fantastic young man with several years of experience and a wealth of knowledge - now for the "However" - I'm only the 3rd woman with a mast. that he's worked with. He's with VA so he almost exclusively sees men with issues. Early on we had some 'issues' in that he was trying to treat me as he had the last woman he had seen - didn't work - she needed heavy compression, I need light; she lived in a nursing home, I'm very active with doing my own yardwork (once it gets warm LOL) and having the horses; I have a lot more edema than she had. I/My body has taught him a lot and he's taught me a lot. Yes we did have a bit of a shakey start but he is fantastic and we have worked through the 'issues' and I really can't see wanting someone other than him.

Susan

survivorbc09

carkris said:

lots of people do and they
lots of people do and they will post!

I don't, but, as Carkris
I don't, but, as Carkris said, many pink sisters on here do have it and will reply to you.


Hugs, Jan

Jacque101

Rague said:

Certified Lymphedemologist
I have to agree that you do need to have a certified lymphedemologist - others can do more harm than good. That said - remember that not all certified Lymphedemologist have the same knowledge/experience with all types/causes of it. My Guy is a fantastic young man with several years of experience and a wealth of knowledge - now for the "However" - I'm only the 3rd woman with a mast. that he's worked with. He's with VA so he almost exclusively sees men with issues. Early on we had some 'issues' in that he was trying to treat me as he had the last woman he had seen - didn't work - she needed heavy compression, I need light; she lived in a nursing home, I'm very active with doing my own yardwork (once it gets warm LOL) and having the horses; I have a lot more edema than she had. I/My body has taught him a lot and he's taught me a lot. Yes we did have a bit of a shakey start but he is fantastic and we have worked through the 'issues' and I really can't see wanting someone other than him.

Susan

thank you for all the good information
seems after reading the response and looking at some of the suggested web sites, that i have more problems than i realized. mention of webbing on one site, then swelling on shoulder and back, also pain when using the arm even while wrapped. i do have a PT SPECIALIZING IN lymph area. but for now with working i seem to be getting worse. desk jobs are hard esp typing.
please continue to comment
jacki

Jacque101

Dawne.Hope said:

I have it
Dear Jacque101 - I have lymphedema and I didn't have chemo or radiation but it sucks! I HATE IT! I've found the following websites very helpful. One of the things I hate most about LE is that it is not a one answer fits all. We're all different, our bodies are different, and what causes us to flair is different. I have it in my fingers on both hands. My left arm feels 'full' but there is no noticeable swelling. Less compression is better for me than more. I wear gloves and sleeves every day, do the manual lymph drainage 2x a day, and the exercises my LE OT prescribed for me 2x day. I don't know how to wrap, although I'd like to know how because I swell at night. I find if sleep on my sides the swelling is worse. If I sleep with hands up on pillows it is better, but who really can sleep that way? I try. I've found some online videos helpful to add to my MLD. The step up/speak out site has been a lifesaver for me just to know that there are other women out there who know.

I hate it that you to deal with LE too. Having bc cancer was terrible. Having LE is a constant reminder of the bc ... how are we supposed to get on with our lives when we have to deal with it? GRRRRRR! I hate it! That's my lament. Sorry I'm not more encouraging ... others will be! Here are the links. I really have found them helpful. xo

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

http://www.jovipak.com/video.shtml

http://www.nwlymphedemacenter.org/vid_mngmntA.php

GRRRRRR
I HATE IT TOO....Thanks for web info, my PT PUT the 'webbing underarm' ON HER NOTES but hasn't talked 2 me about it yet.

Rague

Jacque101 said:

thank you for all the good information
seems after reading the response and looking at some of the suggested web sites, that i have more problems than i realized. mention of webbing on one site, then swelling on shoulder and back, also pain when using the arm even while wrapped. i do have a PT SPECIALIZING IN lymph area. but for now with working i seem to be getting worse. desk jobs are hard esp typing.
please continue to comment
jacki

We're all so different!
Personally, with what I have learned, I would not use a PT "specializing" in lymphedema - I would want a Certified Lymphedemologist. My guy is a Certified Lymphdemologist, he is also certified (or whatever the right term is) Occupational Therapist (that's what his Master's is in). I had started working with a Physical Trainer because i wanted to get ALL of me in shape for summer - but that didn't working out the way I want it to so will be working with the PT people monthly at Ft. Meade under the direction of my 'Guy' to get my plan for using the base gym.

For me - pain has not been an issue - have almost full ROM and have had all along. Discomfort yes from the swelling but pain - no for me.

For me anyway - the webbing has nothing to do with lymphedema! Have always had it - even have some between toes - just strange me. My webbing does cause pain from my gloves - they are custom BUT as I loose/lost the edema in hand, it causes the area of gloves between fingers to cut in/tighten in on the webbing - hurts.

We are all so different - there are a lot of 'things' that never were a problem for me - but are for other; 'things' that have been BAD for me that others never experience. Bottom line as far as I'm concerned - I've been through 'stuff' and I'd do it all again in a heart beat if I need to - I'm still alive and can do anything I really want to.

Dawne.Hope

Jacque101 said:

thank you for all the good information
seems after reading the response and looking at some of the suggested web sites, that i have more problems than i realized. mention of webbing on one site, then swelling on shoulder and back, also pain when using the arm even while wrapped. i do have a PT SPECIALIZING IN lymph area. but for now with working i seem to be getting worse. desk jobs are hard esp typing.
please continue to comment
jacki

Jacque - I'm not clear if
Jacque -

I'm not clear if you've been to a certified lymphedema therapist or not ... are you wearing gloves and sleeves right now?

I find that the gloves and sleeves minimize the swelling on days that I'm at a computer or driving.

I do have pain. When I'm having a bad swell day, I have pain in my fingers (an ache), pain behind in my elbow, pain under my arm and in my shoulder. Those are signs that I need to back off and take it easy.

My triggers seem to be: Hot temperature, salt, and overuse.
Things that help: Drinking LOTS of water (no caffeine, no soda), good sleep & my compression garments.

Hang in there. Do find a good therapist. They are worth their weight in gold. I'm trying hard to get back to mine, if I can afford it.

Link for finding a certified therapist: There are good therapists that are not lana certified, but here is a starting point in helping you find a good LE therapist:

http://www.clt-lana.org/therapists/default.asp

P.S. I didn't realize when I tried to see an LE therapist ... you need a doctor's referal to see one. Either your onc, your BS, or even your primary physician can write an order for you to see an LE therapist. My BS didn't believe that I had it, my PS said, "Well, if you have it, it's minor don't worry about it." Really???!!! I finally made an appt. with my primary doctor ... he wanted a doplar ultra sound on my arm to make sure I didn't have any blood clots, and after that came back clear, I was finally able to get in to see a therapist. It sounds like you won't have that trouble ... but you do have to have a doc refer you to one of these specialists.

Rague

Dawne.Hope said:

Jacque - I'm not clear if
Jacque -

I'm not clear if you've been to a certified lymphedema therapist or not ... are you wearing gloves and sleeves right now?

I find that the gloves and sleeves minimize the swelling on days that I'm at a computer or driving.

I do have pain. When I'm having a bad swell day, I have pain in my fingers (an ache), pain behind in my elbow, pain under my arm and in my shoulder. Those are signs that I need to back off and take it easy.

My triggers seem to be: Hot temperature, salt, and overuse.
Things that help: Drinking LOTS of water (no caffeine, no soda), good sleep & my compression garments.

Hang in there. Do find a good therapist. They are worth their weight in gold. I'm trying hard to get back to mine, if I can afford it.

Link for finding a certified therapist: There are good therapists that are not lana certified, but here is a starting point in helping you find a good LE therapist:

http://www.clt-lana.org/therapists/default.asp

P.S. I didn't realize when I tried to see an LE therapist ... you need a doctor's referal to see one. Either your onc, your BS, or even your primary physician can write an order for you to see an LE therapist. My BS didn't believe that I had it, my PS said, "Well, if you have it, it's minor don't worry about it." Really???!!! I finally made an appt. with my primary doctor ... he wanted a doplar ultra sound on my arm to make sure I didn't have any blood clots, and after that came back clear, I was finally able to get in to see a therapist. It sounds like you won't have that trouble ... but you do have to have a doc refer you to one of these specialists.

Just another example
of how different we all are. I have more problems in winter than summer - but then is cold here - temps into the minus teens (actual temps not wind chill - it's 4F right now) are not unusual. I'm also a lot more active in late spring/summer with my yard (mow it at least every other day most of summer with a push mower) and riding/horse stuff. Do i have issues - all year - YUP but for me worse in winter.

Susan

Dawne.Hope

Rague said:

Just another example
of how different we all are. I have more problems in winter than summer - but then is cold here - temps into the minus teens (actual temps not wind chill - it's 4F right now) are not unusual. I'm also a lot more active in late spring/summer with my yard (mow it at least every other day most of summer with a push mower) and riding/horse stuff. Do i have issues - all year - YUP but for me worse in winter.

Susan

Interesting
Sue, that's so interesting!

It was last summer, very hot day that I knew I had a problem. I swelled up bad after a long walk in the heat. My fingers didn't go down ... they stayed huge like sausages. That's when I knew I had a problem.

Mine is almost normal in the cold. Last night in the car, I had the heater on because I was freezing, and my fingers swelled up.

So strange! That's why this stupid condition is so hard to control ... we're all different and we need a program that fits us individually.

Springs coming ... so that's good for you!

Take care!

Rague

Dawne.Hope said:

Interesting
Sue, that's so interesting!

It was last summer, very hot day that I knew I had a problem. I swelled up bad after a long walk in the heat. My fingers didn't go down ... they stayed huge like sausages. That's when I knew I had a problem.

Mine is almost normal in the cold. Last night in the car, I had the heater on because I was freezing, and my fingers swelled up.

So strange! That's why this stupid condition is so hard to control ... we're all different and we need a program that fits us individually.

Springs coming ... so that's good for you!

Take care!

My fingers don't swell at
My fingers don't swell at all hardly (definately not sausages LOL)- yeah they are a little bit but if I wanted to could still get most of my rings on - not worth the chance they might decide to swell with rings on. My major swelling stops at knuckles - looks like a line across them with basically 'normal' fingers sticking out. It was last winter after it got really cold that it started.

Yeah - I'm weird! Just ask Hubby or Son.

Susan