CSN Login
Members Online: 9

what is lymphedema pain like?

cinnamonsmile
Posts: 1049
Joined: Dec 2010

i was reading one of the posts and someone mentioned lymphedema pain? can someone tell me what this is like?

lori1961's picture
lori1961
Posts: 56
Joined: Oct 2010

as far as I know it feels like water in the arm and real tight in the area. if it is in you air you can raise the arm and squeeze it 20-25 times to get rid of the fluid. also keep your arm elevated on a pillow above your heart...hope that helps

Rague
Posts: 3334
Joined: Aug 2009

BUT it isn't. In minor cases it does help but it's not an answer for all.

DebbyM's picture
DebbyM
Posts: 3294
Joined: Oct 2009

I don't know, as, I have been fortunate enough to not have lymphedema.

Hugs, Debby

Rague
Posts: 3334
Joined: Aug 2009

Lymphedema comes in various degrees. For me - it's a 24/7 battle to keep somewhat under control. For some it's minor swelling in hand and/or arm, for others heavier swelling in hand and arm, shoulder can also be involved as well as underarm, back and chest.

I don't have what I consider pain unless I use it - dicsomfort from the feeling the swelling/weight yes. For me - it's custom day sleeves and gloves, custom night sleeve with covers and a FlexiTough MLD (Manual Lymphatic Drainage)machine for an hour daily to keep it close to under control. I had been doing pretty good with just the day gasrments and night sleeve until after the bad rad burns wjicj apparently ngatively effect all area they had treated and burned. If you want to see what my machine looks like go to www.flexitouch.com

Thankfully most don't get lymphedema as much as I did but you do =need to stay on top of it.

Susan

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

After having 23 lymph nodes removed in Dec. '09, I have lymphedema in my affected breast (had a lumpectomy), along my trunk on that side and sometimes along my rib cage going towards my back. Like Susan, I too have a FlexiTouch machine which helps. The swelling is sometimes painful, but oftentimes feels like pins and needles (for me)or a heavy feeling. Whenever I fly, a compression glove and sleeve must be used on the affected side. I lift or carry almost nothing on that side anymore--not even my handbag.

So far, I am managing this, but lymphedema can come up on anyone at any time after these types of surgeries--even years after. And, if left untreated, it can get worst and very problematic.

Renee

Pinkpower's picture
Pinkpower
Posts: 437
Joined: Jun 2010

I only had 3 lymph nodes removed and my lymphadema was not too bad. Swelling in the hand and arm. It hurt a little when I lifted my arm. and I worked on a computer all day so it was uncomfortable to type. I did go see a lymphadema physical therapist specialist and the massages and exercises they thought me did help a little, but it only till I finished with chemo and rad that it all the swelling went away, and I can say that my arm doesnt bother me anymore. I still cant stretch to a certain point, but it is getting better.
Hope this helps.

Lupe

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

For me, it's an ache in my fingers - that's where I primarily have it. When it is really bad it hurts like when you have a busted blood vessel. I've only ever had that particular pain in my fingers.

It can ache all the way up my arm ... around my elbow and in my shoulder. For me, it's not a sharp pain, but a dull ache.

pokrydi's picture
pokrydi
Posts: 99
Joined: Feb 2011

cinnamonsmile thanks for asking the question, I had 21 lymphnods taken out on 1/14/11 and my arm still hurts as well as feeling that my hand is asleep i go for follow up thurs but I worry about getting lymphedema so again thanks for asking, Diane

TP123
Posts: 53
Joined: Oct 2010

I have the same question about the lymphedema pain. I currently have forearm pain but it also extends to a couple of fingers and a little bit to my upper arm. It feels like a bruise but there is nothing there. Could this be lymphedema pain? I am on rad treatment # 10 tomorrow and initially thought it was from the positioning my arm above my head. Can anyone shed light on this? (I don't notice swelling unless its minimal.)

RE's picture
RE
Posts: 4621
Joined: Feb 2004

For me it was pain in the effected limb and the sensation of weight or a heaviness, it swelled and also felt tight. Here is a site you may find helpful.

http://www.lymphnet.org/

RE

TP123
Posts: 53
Joined: Oct 2010

Thanks so much for your input and help. The site is very helpful too.

barbfox62
Posts: 7
Joined: May 2012

i have bilateral lymphodema in my right thigh, hip. my leg is swollen to about 49 inches. my eft one is 38 my upper thigh is so big and hangs over my knee. it hurts so bad. the only way i know how to describe it as throbbing deep pain. its like someone has a very large rusty screwdriver and it is being ripped down my leg past my knee.it makes my lower leg go numb. i cant feelmy feet at times. if i dont actually look to make sure my foot is facing forward i have stood up from sittin or lying down and i have fallen several times. one time i fell outside and lied on the ground for 3 hours till someone found me to help me get back up. im on methadone and oxycodine. without the pain meds my pain level is a 25. with pain meds my pain level is a 20. ive tried small exercises. swiming. range of motion. nothing works. i cant walk stand sit or lie in one spot for very long or my leg goes to sleep. if i have to go shopping.or drive for a lond distance i pay for it for 3 weeks or more for the swelling to go down just a little. sometimes i think im just ging to lie in this bed and die either from bordom lonlyness or pain. I lost my husband last year and this has been the hardest year of my life.

barbfox62
Posts: 7
Joined: May 2012

i have bilateral lymphodema in my right thigh, hip. my leg is swollen to about 49 inches. my eft one is 38 my upper thigh is so big and hangs over my knee. it hurts so bad. the only way i know how to describe it as throbbing deep pain. its like someone has a very large rusty screwdriver and it is being ripped down my leg past my knee.it makes my lower leg go numb. i cant feelmy feet at times. if i dont actually look to make sure my foot is facing forward i have stood up from sittin or lying down and i have fallen several times. one time i fell outside and lied on the ground for 3 hours till someone found me to help me get back up. im on methadone and oxycodine. without the pain meds my pain level is a 25. with pain meds my pain level is a 20. ive tried small exercises. swiming. range of motion. nothing works. i cant walk stand sit or lie in one spot for very long or my leg goes to sleep. if i have to go shopping.or drive for a lond distance i pay for it for 3 weeks or more for the swelling to go down just a little. sometimes i think im just ging to lie in this bed and die either from bordom lonlyness or pain. I lost my husband last year and this has been the hardest year of my life.

barbfox62
Posts: 7
Joined: May 2012

i have bilateral lymphodema in my right thigh, hip. my leg is swollen to about 49 inches. my eft one is 38 my upper thigh is so big and hangs over my knee. it hurts so bad. the only way i know how to describe it as throbbing deep pain. its like someone has a very large rusty screwdriver and it is being ripped down my leg past my knee.it makes my lower leg go numb. i cant feelmy feet at times. if i dont actually look to make sure my foot is facing forward i have stood up from sittin or lying down and i have fallen several times. one time i fell outside and lied on the ground for 3 hours till someone found me to help me get back up. im on methadone and oxycodine. without the pain meds my pain level is a 25. with pain meds my pain level is a 20. ive tried small exercises. swiming. range of motion. nothing works. i cant walk stand sit or lie in one spot for very long or my leg goes to sleep. if i have to go shopping.or drive for a lond distance i pay for it for 3 weeks or more for the swelling to go down just a little. sometimes i think im just ging to lie in this bed and die either from bordom lonlyness or pain. I lost my husband last year and this has been the hardest year of my life.

barbfox62
Posts: 7
Joined: May 2012

i have bilateral lymphodema in my right thigh, hip. my leg is swollen to about 49 inches. my eft one is 38 my upper thigh is so big and hangs over my knee. it hurts so bad. the only way i know how to describe it as throbbing deep pain. its like someone has a very large rusty screwdriver and it is being ripped down my leg past my knee.it makes my lower leg go numb. i cant feelmy feet at times. if i dont actually look to make sure my foot is facing forward i have stood up from sittin or lying down and i have fallen several times. one time i fell outside and lied on the ground for 3 hours till someone found me to help me get back up. im on methadone and oxycodine. without the pain meds my pain level is a 25. with pain meds my pain level is a 20. ive tried small exercises. swiming. range of motion. nothing works. i cant walk stand sit or lie in one spot for very long or my leg goes to sleep. if i have to go shopping.or drive for a lond distance i pay for it for 3 weeks or more for the swelling to go down just a little. sometimes i think im just ging to lie in this bed and die either from bordom lonlyness or pain. I lost my husband last year and this has been the hardest year of my life.

barbfox62
Posts: 7
Joined: May 2012

i have bilateral lymphodema in my right thigh, hip. my leg is swollen to about 49 inches. my eft one is 38 my upper thigh is so big and hangs over my knee. it hurts so bad. the only way i know how to describe it as throbbing deep pain. its like someone has a very large rusty screwdriver and it is being ripped down my leg past my knee.it makes my lower leg go numb. i cant feelmy feet at times. if i dont actually look to make sure my foot is facing forward i have stood up from sittin or lying down and i have fallen several times. one time i fell outside and lied on the ground for 3 hours till someone found me to help me get back up. im on methadone and oxycodine. without the pain meds my pain level is a 25. with pain meds my pain level is a 20. ive tried small exercises. swiming. range of motion. nothing works. i cant walk stand sit or lie in one spot for very long or my leg goes to sleep. if i have to go shopping.or drive for a lond distance i pay for it for 3 weeks or more for the swelling to go down just a little. sometimes i think im just ging to lie in this bed and die either from bordom lonlyness or pain. I lost my husband last year and this has been the hardest year of my life.

barbfox62
Posts: 7
Joined: May 2012

i have bilateral lymphodema in my right thigh, hip. my leg is swollen to about 49 inches. my eft one is 38 my upper thigh is so big and hangs over my knee. it hurts so bad. the only way i know how to describe it as throbbing deep pain. its like someone has a very large rusty screwdriver and it is being ripped down my leg past my knee.it makes my lower leg go numb. i cant feelmy feet at times. if i dont actually look to make sure my foot is facing forward i have stood up from sittin or lying down and i have fallen several times. one time i fell outside and lied on the ground for 3 hours till someone found me to help me get back up. im on methadone and oxycodine. without the pain meds my pain level is a 25. with pain meds my pain level is a 20. ive tried small exercises. swiming. range of motion. nothing works. i cant walk stand sit or lie in one spot for very long or my leg goes to sleep. if i have to go shopping.or drive for a lond distance i pay for it for 3 weeks or more for the swelling to go down just a little. sometimes i think im just ging to lie in this bed and die either from bordom lonlyness or pain. I lost my husband last year and this has been the hardest year of my life.

barbfox62
Posts: 7
Joined: May 2012

i have bilateral lymphodema in my right thigh, hip. my leg is swollen to about 49 inches. my eft one is 38 my upper thigh is so big and hangs over my knee. it hurts so bad. the only way i know how to describe it as throbbing deep pain. its like someone has a very large rusty screwdriver and it is being ripped down my leg past my knee.it makes my lower leg go numb. i cant feelmy feet at times. if i dont actually look to make sure my foot is facing forward i have stood up from sittin or lying down and i have fallen several times. one time i fell outside and lied on the ground for 3 hours till someone found me to help me get back up. im on methadone and oxycodine. without the pain meds my pain level is a 25. with pain meds my pain level is a 20. ive tried small exercises. swiming. range of motion. nothing works. i cant walk stand sit or lie in one spot for very long or my leg goes to sleep. if i have to go shopping.or drive for a lond distance i pay for it for 3 weeks or more for the swelling to go down just a little. sometimes i think im just ging to lie in this bed and die either from bordom lonlyness or pain. I lost my husband last year and this has been the hardest year of my life.

Rague
Posts: 3334
Joined: Aug 2009

What are you doing? Do you do to deal with it - wrap daily/have day compression garments/have night compression garments/do MLD massage/have a MLD machine? How oten do you see your LE person? As I said before I deal with LE in my mast. side but being pro-active keeps it basically under control. Actually, the more exercise I get the better it is for me.

Perhaps you should ask for a different Certified Lymphedema Theapist. The principles used with hand/arm/under arm/chest are basically the same as used with leg LE - at least that's what my LE guy says.

Winyan - The Power Within

Susan

Jenna123
Posts: 1
Joined: May 2012

I've had lymphedema in my right leg for almost 20 years. I am surprised to read from people who have it who report no or little pain. Maybe it's different in the leg, but in the leg I can tell you it hurts. It feels like an annoying, focused ache that cannot be quelled. Imaging what it would feel like if your veins were squeezed from the inside. That's what it feels like to me. You need to rub it, but rubbing it doesn't make it go away because it's not in one place, it's everywhere, the entire circumference, the entire leg. Worse towards my foot an ankle sometimes, worse behind my knee at others, and sometimes, pain on inside of my thigh. It feels like things are bursting inside me. Bursting because they have been over stretched- like a blood vessel over stretched- or a vein overstretched- bursting like pangs of pain followed by an ache that you cannot stop. I too use oxycodone at times, but it does not actually stop the pain, so I have learned to live with it, and live with lying on my back elevated during much of my days which I can tell you leads to other pain. I also have pain in my hip, as fluid has gathered there too. Lymphedema does NOT feel like water. IT has a distinct vascular feel to it.

Rague
Posts: 3334
Joined: Aug 2009

MLD massage does help with drainage but it's not just 'rubbing'. Harm can be done by just 'rubbing'. MLD (Mannual Lymphatic Drainage) is done in order to drain the uneffected areas first so that you can then massage the effected areas so that there is 'room' for them to drain to.

There can be many reasons for swelling in extremities - all are not caused by the removal of lymph nodes as in BC.

Winyan - The Power Within

Susan

RE's picture
RE
Posts: 4621
Joined: Feb 2004

Personally my arm pretty much hurts all of the time, it is an ache similar to a bad sprang. It is heavy and swollen, there are shooting pains and the feeling of fullness and or tightness in the arm. If you suspect you have it it would be very important to see your doctor to determine if that is the case.

Here is a link that you may find helpful, simply copy and paste it:

http://www.lymphnet.org/

Hugs,

RE

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I have severe PMPS on the back of the arms, chest area, under arms, and around the back a bit. I have noticed over the past year, that at times, the side of my chest and back of the upper arms, and the flab right under the arm have a very noticeable swollen feeling to it. I have noticed that some of the LE pain that women have reported are similar to PMPS pains. I had last seen an occupational therapist for scar tissue adhesions, light cording under the arms, and pain sometime last September maybe. I had complained about feeling swollen at times to the OT.What a ditz she was about that. She would take measurements every few weeks for an evaluation, but never around the chest. On my LAST day she "finally" heard my complaints about swelling (I held back saying you idiot, I have been telling you all summer long, especially during a horried humid heatwave we had). She said something stupid like, "Oh, do you feel swelling?" She looked back and noticed 3-4 cm difference in circumference at times.She did a manual massage down my right arm and dismissed me.

Unfortuneately, there are no certified LE therapists within a three hour drive from where I live. There is no way on God's green earth I can get there unless my doctor would approve a medi-van for me. I don't expect that Medicare and Medicaid will be will to dish out the funds for a few trips every week.

So here I sit. Something in my gut says I may have a very mild LE case which was masked by the severe PMPS and chest scar tissue adhesions. I had no idea the amount of pain I was in was not normal, so my surgeon didn't know exactly how bad it was. I did discuss my LE worries with my family dr. and she said it sounded like LE. That is as far as I got.

I think now I am beginning to be able to tell the difference when I feel swollen. It is like that junk under my arm and the back of my arm feel very swollen at times. So bad that I can tell the difference in the right and left sides that when my arms at my sides, I can feel that I can't lay my right arm as close to my body as my left arms.

I don't know that I am looking for answers, because I don't know if there are any right now. I am kind of stuck in limbo.

Thanks for hearing me out.

When I originally posted this back in 2011, I was trying to figure out if LE had pain and if it was being masked by the PMPS.

P.S. I notice at night if I lay on my hands or sleep with bent wrists they feel funny, almost numb. I was tested for carpal tunnel and was negative (although now I do not trust the idiot neurologist I had).Sometimes my fingers feel swollen, and it feels weird to bend them. Almost like there is a huge rubber band in each finger that holds it back.

RE's picture
RE
Posts: 4621
Joined: Feb 2004

At the risk of sounding dingy I am wondering what PMPS is, could you enlighten me please.

:-)

RE

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

I am wondering if there is any way that home healthcare could contract with a LE therapist to come to your home for several afternoons and teach you some of the techniques and measure for compression garments. I think if they may have to pay for it (the insurance co) if this is limiting your ability to care for yourself. I think I would want to investigate what can be done for you considering the level of complications you describe.

1surfermom's picture
1surfermom
Posts: 264
Joined: Mar 2009

As the others have said, LE pain is a fullness or a heaviness. I had 28 nodes removed on my left side. To me lymphadema feels like my arm wants to sneeze. I try to keep my LE controlled. I sleep with a night garment (Jovi-Pak) and wear a compression sleeve when I exercise. When I fly I wear a sleeve and a custom made glove for my hand. I think the worst time my LE flaired up was in Hawaii, my hand and fingers swelled to about 1.5 x I couldn't remove my wedding rings and the flight home was just miserable. It was totally my fault because I went windsurfing and didn't realize the toll holding a sail would do on my arm. I'll never do that again. It took me about 3 weeks with a therapist(including wrapping) to get my arm and hand back to a somewhat normal state. I hope you don't have LE it is a huge pain to deal with. Surf

Texasgirl10's picture
Texasgirl10
Posts: 668
Joined: Nov 2010

I've been so swollen that it actually feels like my skin is too small for my arm. And it's rock hard. Ivd been seeing a lymphadema specialist for the past 2 weeks and the swelling has gone down tremendously and we just ordered my sleeve and glove today. She is also in the process of getting a flexi touch pump for me.

Rosemarie810
Posts: 3
Joined: Apr 2010

I started out with Lymhedema in my right arm after by BMX, the second year it was in my left arm as well and now this year they have found fluid in my back area.  The pain I get in my arm is from the shoulder to the elbow and feels like someone has taken a knife and just slashed down my arm.  I am having pain in my ribs and the doctor has ordered tests to rule out any reocurrance of cancer.  I wear sleeves, gloves/gauntlets every day from the time I shower until I go to bed.  I then have to wrap with short stretch bandages at night. I do mannual drainage several times a day and use really good lotion at night before wrapping.  I will be taking weekly trips to the LE therapist for manual drainage of the back fluid.  I had 16 nodes on the right side removed and 3 on the left side.  My fingers tend to be numb when I wake up in the morning and my grip is not so good.  I have learned to take tepid showers because heat isn't very good for you and I wear gloves for doing dishes or other household chores. 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network