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Thoughts on Lymphedema

Forums General Melanoma Community Thoughts on Lymphedema

  • Post
    Colleen66
    Participant

      I have lymphedema in my left leg.  I do the self massage and wear a stocking during the day.  Two things I have learned in the last 3 months.  I can only sleep on my right side or back, this leaves the left open to drain during the night.  This was hard for me cuz I always slept on my left side so I piled firm pillows at my back so I wouldn't roll over in my sleep.  Second thing I learned is don't buy a drugstore stocking.  It needs to fit correctly and have the right compression, I use a 30. 

      I have lymphedema in my left leg.  I do the self massage and wear a stocking during the day.  Two things I have learned in the last 3 months.  I can only sleep on my right side or back, this leaves the left open to drain during the night.  This was hard for me cuz I always slept on my left side so I piled firm pillows at my back so I wouldn't roll over in my sleep.  Second thing I learned is don't buy a drugstore stocking.  It needs to fit correctly and have the right compression, I use a 30. 

      I missed my opportunity to get to the specialist in a timely manner because of my interferon treatments.   I'm probably not alone in that category but I did learn the message technique from a YouTube video and figured the rest out as I went.

      Anyone else have any tips?

      Colleen 

    Viewing 11 reply threads
    • Replies
        Linny
        Participant

          I think you covered one of the most important items well: do not buy a compression garment from a drug store. smiley

          You need to be measured for garment by a physical therapist experienced in lymphedema. You will need a prescription for the garment and a second one for seeing the therapist.

          If you are at risk for lymphedema as a result of an axillary dissection, breast cancer web sites have lots of information and resources for you.

          Linny
          Participant

            I think you covered one of the most important items well: do not buy a compression garment from a drug store. smiley

            You need to be measured for garment by a physical therapist experienced in lymphedema. You will need a prescription for the garment and a second one for seeing the therapist.

            If you are at risk for lymphedema as a result of an axillary dissection, breast cancer web sites have lots of information and resources for you.

            Linny
            Participant

              I think you covered one of the most important items well: do not buy a compression garment from a drug store. smiley

              You need to be measured for garment by a physical therapist experienced in lymphedema. You will need a prescription for the garment and a second one for seeing the therapist.

              If you are at risk for lymphedema as a result of an axillary dissection, breast cancer web sites have lots of information and resources for you.

              Valentine
              Participant

                Colleen,

                Exercising in the pool also provides natural compression. It helps quite a bit actually.

                I also use a Flexitouch machine every night.

                So between the compression garment in the daytime, an hour in the pool every day, and the Flexitouch in the evening the lymphedema is pretty well controlled.

                Unfortunately, other health isses have kept me out of the pool and kept me from wearing the garment lately and I can tell I am "filling up" with lymphedema.

                Cheri

                  Colleen66
                  Participant

                    Cheri,

                    Yes, swimming is great for it too.  Our YMCA has a warm pool for physical therapy and it is great.  I could never last long enough in a cold pool!

                    I hope you get back on your feet soon.  

                    Be well.

                    Colleen 

                    Colleen66
                    Participant

                      Cheri,

                      Yes, swimming is great for it too.  Our YMCA has a warm pool for physical therapy and it is great.  I could never last long enough in a cold pool!

                      I hope you get back on your feet soon.  

                      Be well.

                      Colleen 

                      Colleen66
                      Participant

                        Cheri,

                        Yes, swimming is great for it too.  Our YMCA has a warm pool for physical therapy and it is great.  I could never last long enough in a cold pool!

                        I hope you get back on your feet soon.  

                        Be well.

                        Colleen 

                      Valentine
                      Participant

                        Colleen,

                        Exercising in the pool also provides natural compression. It helps quite a bit actually.

                        I also use a Flexitouch machine every night.

                        So between the compression garment in the daytime, an hour in the pool every day, and the Flexitouch in the evening the lymphedema is pretty well controlled.

                        Unfortunately, other health isses have kept me out of the pool and kept me from wearing the garment lately and I can tell I am "filling up" with lymphedema.

                        Cheri

                        Valentine
                        Participant

                          Colleen,

                          Exercising in the pool also provides natural compression. It helps quite a bit actually.

                          I also use a Flexitouch machine every night.

                          So between the compression garment in the daytime, an hour in the pool every day, and the Flexitouch in the evening the lymphedema is pretty well controlled.

                          Unfortunately, other health isses have kept me out of the pool and kept me from wearing the garment lately and I can tell I am "filling up" with lymphedema.

                          Cheri

                          jcraigdawson
                          Participant

                            look into getting a  Reid Sleeve for night time (made by peninsula medical.) its been highly effetive for me and is less intrusive to sleeping than a pump. 

                            getting it paid for by insurance was a hassle, but wrth the effort. i also take it  with me on airplane rides to reduce swelling in the air.

                            good luck!

                            jcraigdawson
                            Participant

                              look into getting a  Reid Sleeve for night time (made by peninsula medical.) its been highly effetive for me and is less intrusive to sleeping than a pump. 

                              getting it paid for by insurance was a hassle, but wrth the effort. i also take it  with me on airplane rides to reduce swelling in the air.

                              good luck!

                              jcraigdawson
                              Participant

                                look into getting a  Reid Sleeve for night time (made by peninsula medical.) its been highly effetive for me and is less intrusive to sleeping than a pump. 

                                getting it paid for by insurance was a hassle, but wrth the effort. i also take it  with me on airplane rides to reduce swelling in the air.

                                good luck!

                                Tina D
                                Participant

                                  I also have lymphedema in the left leg. I missed the prime time to have it reduced just due to other physical stuff going on with the mel. But, I saw a PT who specialized in lymphedema who did the manual drainage and wrapped me in compression wraps ( like the michellin man) for several weeks to get it reduced as much as possible before fitting me for the custom compression garment. The wraps were a pain because they are bulky and have to be worn all but a couple hours out of every 24, but they DID help reduce the edema. Once this was accomplished I was measured for a compression garment. The garment is made in germany and goes from base of toes to thigh, with a badn around my waist to anchor it. Insurance covered it and it does a far superior job to the heavy strength jobst stockings I was buying. We discussed the flexitouch machine, but since I had active mets in the abdomen at the time, it was recomended against. Also… trying to get it propped every few hours for a little while above hear level is helpful ( but I rarely actually DO this).

                                  Hope this helps some. It is definitely beter controlled if you keep on top of it.

                                  Tina

                                  Tina D
                                  Participant

                                    I also have lymphedema in the left leg. I missed the prime time to have it reduced just due to other physical stuff going on with the mel. But, I saw a PT who specialized in lymphedema who did the manual drainage and wrapped me in compression wraps ( like the michellin man) for several weeks to get it reduced as much as possible before fitting me for the custom compression garment. The wraps were a pain because they are bulky and have to be worn all but a couple hours out of every 24, but they DID help reduce the edema. Once this was accomplished I was measured for a compression garment. The garment is made in germany and goes from base of toes to thigh, with a badn around my waist to anchor it. Insurance covered it and it does a far superior job to the heavy strength jobst stockings I was buying. We discussed the flexitouch machine, but since I had active mets in the abdomen at the time, it was recomended against. Also… trying to get it propped every few hours for a little while above hear level is helpful ( but I rarely actually DO this).

                                    Hope this helps some. It is definitely beter controlled if you keep on top of it.

                                    Tina

                                    Tina D
                                    Participant

                                      I also have lymphedema in the left leg. I missed the prime time to have it reduced just due to other physical stuff going on with the mel. But, I saw a PT who specialized in lymphedema who did the manual drainage and wrapped me in compression wraps ( like the michellin man) for several weeks to get it reduced as much as possible before fitting me for the custom compression garment. The wraps were a pain because they are bulky and have to be worn all but a couple hours out of every 24, but they DID help reduce the edema. Once this was accomplished I was measured for a compression garment. The garment is made in germany and goes from base of toes to thigh, with a badn around my waist to anchor it. Insurance covered it and it does a far superior job to the heavy strength jobst stockings I was buying. We discussed the flexitouch machine, but since I had active mets in the abdomen at the time, it was recomended against. Also… trying to get it propped every few hours for a little while above hear level is helpful ( but I rarely actually DO this).

                                      Hope this helps some. It is definitely beter controlled if you keep on top of it.

                                      Tina

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