what is lymphedema pain like?

cinnamonsmile
cinnamonsmile Member Posts: 1,187 Member
in Breast Cancer #1
i was reading one of the posts and someone mentioned lymphedema pain? can someone tell me what this is like?
«1

Comments

  • lori1961
    lori1961 Member Posts: 56
    #2
    lymphadema pain
    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
    Rague Member Posts: 3,653 Member
    #3
    Lymphedema comes in various
    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
  • Rague
    Rague Member Posts: 3,653 Member
    #4
    lori1961 said:

    lymphadema pain
    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

    How I wish that was the answer!
    BUT it isn't. In minor cases it does help but it's not an answer for all.
  • missrenee
    missrenee Member Posts: 2,136 Member
    #5
    Rague said:

    Lymphedema comes in various
    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

    Susan is right--not a simple problem to deal with
    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
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #6
    Rague said:

    How I wish that was the answer!
    BUT it isn't. In minor cases it does help but it's not an answer for all.

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


    Hugs, Debby
  • Pinkpower
    Pinkpower Member Posts: 437
    #7
    I only had 3 lymph nodes
    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
    Dawne.Hope Member Posts: 823
    #8
    For me, it's an ache in my
    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
    pokrydi Member Posts: 99
    #9
    Dawne.Hope said:

    For me, it's an ache in my
    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.

    cinnamonsmile thanks for
    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
    TP123 Member Posts: 53
    #10
    I have the same question
    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
    RE Member Posts: 4,591 Member
    #11
    lymphedema
    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
    TP123 Member Posts: 53
    #12
    RE said:

    lymphedema
    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

    Thanks so much for your
    Thanks so much for your input and help. The site is very helpful too.
  • barbfox62
    barbfox62 Member Posts: 7
    #13
    lymphodema pain
    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
    barbfox62 Member Posts: 7
    #14
    lymphodema pain
    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
    barbfox62 Member Posts: 7
    #15
    lymphodema pain
    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
    barbfox62 Member Posts: 7
    #16
    lymphodema pain
    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
    barbfox62 Member Posts: 7
    #17
    lymphodema pain
    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
    barbfox62 Member Posts: 7
    #18
    lymphodema pain
    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
    barbfox62 Member Posts: 7
    #19
    lymphodema pain
    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.
  • Jenna123
    Jenna123 Member Posts: 1
    #20
    Lymphedema pain from someone who has it
    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.
  • RE
    RE Member Posts: 4,591 Member
    #21
    :-\
    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

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