what is lymphedema pain like?

Rague

barbfox62 said:

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.

What are you doing? Do you
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

Rague

Jenna123 said:

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.

MLD massage does help with
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

cinnamonsmile

I have severe PMPS on the
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

cinnamonsmile said:

I have severe PMPS on the
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.

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

:-)

RE

laughs_a_lot

cinnamonsmile said:

I have severe PMPS on the
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.

Cinnamonsmile
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

laughs_a_lot said:

Cinnamonsmile
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.

lymphadema pain
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

1surfermom said:

lymphadema pain
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

Lymphadema pain
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

I started out with Lymhedema

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.