• Living with Lymphedema

    Asked by alliek78 on Saturday, March 9, 2013

    Living with Lymphedema

    Anyone else living with Lymphedema that is having a hard time with swelling and pain?

    14 Answers from the Community

    14 answers
    • JennyMiller's Avatar
      JennyMiller

      Yes -- Yes -- Yes!!! I have been dealing with it for about a year. At first, I went to Therapy and had the compression bandages to reduce the swelling - then I was fitted for a Sleeve and Glove which I was told I had to wear all the time. At first, all was well -- then my hand started to get puffy. I removed the sleeve for awhile -- then put it back on, etc. It seemed that the sleeve made it worse. Now, my hand is very swollen -- and arm is somewhat. I am not experiencing pain -- just a little discomfort now and then. Another Survivor that I know has the same problem so she goes without her sleeve and she has to actually buy shirts a size larger to accommodate her swollen arm. I would like to know any effects or end results of this swelling --- Have you experienced anything or tried anything that helps? Maybe your post will help both of us get some information.

      about 4 years ago
    • Lindy's Avatar
      Lindy

      Great lymphedema care is not apparently the standard. I got lucky and was referred to a lymphedema genius. He keeps my torso bog under control, arm stable, hand and arm being exercised to improve strength. My cancer buddy goes to him also, her massively enlarged arm and hand are responding amazingly to his expertise. She also has just been supplied with a compression pump for home use. Get competent care, it is available. I am lucky to have Core Rehab in Keller Texas. Good luck.

      about 4 years ago
    • SpunkyS's Avatar
      SpunkyS

      Check with local Physical Therapy departments, probably more related to a hospital or long term care facility. Many of the PTs have extra training in lymphedema management. I have seen some remarkable results.

      about 4 years ago
    • Clyde's Avatar
      Clyde

      I've been lucky and not suffered too much from this, but at first, I was given a few exercises by my surgeon (not the onc) to help with rehab and they seemed to work very well. I still do some of them even though I don't appear to need too just as a precaution. Lindy and SpunkyS have some great advice there.

      about 4 years ago
    • gogolf's Avatar
      gogolf

      I have Lymphodema but it is sort of under control wearing a compression sleeve. I have email the therapist I went to to ask him if there is anywhere patients can go to find a good therapist in their area. If he has any suggestions I will let you know. I was told by the therapist which sleeve to get with the correct compression for me and it really does help. My arm is swollen but not like it was for a while.

      about 4 years ago
    • gogolf's Avatar
      gogolf

      I have Lymphodema but it is sort of under control wearing a compression sleeve. I have email the therapist I went to to ask him if there is anywhere patients can go to find a good therapist in their area. If he has any suggestions I will let you know. I was told by the therapist which sleeve to get with the correct compression for me and it really does help. My arm is swollen but not like it was for a while.

      about 4 years ago
    • gogolf's Avatar
      gogolf

      I have Lymphodema but it is sort of under control wearing a compression sleeve. I have email the therapist I went to to ask him if there is anywhere patients can go to find a good therapist in their area. If he has any suggestions I will let you know. I was told by the therapist which sleeve to get with the correct compression for me and it really does help. My arm is swollen but not like it was for a while.

      about 4 years ago
    • lindagrooms' Avatar
      lindagrooms

      I had my last surgery in Feb. of 02. I had 11 lymphnodes removed. I have struggled with lymphedema. My oncologist sent me for physical theraphy. I wear a sleeve on my left arm. I was told at therapy that there is no cure. Some areas have lymphedema clinics. Even with the sleeve, Some days my arm is larger and hurts. I was told not to carry anything over 5 lbs. or carry my purse on that arm. I was also told to make sure I wear the sleeve if I travel by airplane. Talk to your doctors tp see what is available for you.

      about 4 years ago
    • Max's Avatar
      Max

      I have lymphedema too. In May of 2011, I had a double mastectomy and 16 lymph nodes were removed on the left side. In July, 2011, I was diagnosed with lymphedema. I went to a therapist and she wrapped my arm twice. It was very painful. Then she gave me a compression sleeve to wear. Thankfully, my arm is swollen only from the shoulder to the elbow, and it's only an inch bigger than my good arm. I wore the sleeve off and on and it didn't seem to make a difference, so I quit wearing it. I have pain and tingling, off and on. Sometimes I wake up in the middle of the night in pain. The thing that helps me most is knitting and crocheting. I think that the constant moving of my hands and fingers helps. Sometimes when I have a lot of pain, I elevate my arm and massage the swollen part and it eases the pain.
      I wish they would do research and find a cure. Hope you get some relief.

      about 4 years ago
    • raven's Avatar
      raven

      I have had issues with lymphedema after having a unilateral mastectomy with 30 nodes removed. I use traditional, homeopathic, herbal, what ever I find that may help. My strongest recommendation would be to find a therapist that will teach you self massage (you may need someone else to do the massage in areas you can't reach). My therapist believes that by moving the lymph by massage one is strengthening and enlarging the channels it is flowing through, enabling them to "take over for damaged channels". My experience would tend to support her ideas. I do the massage daily. Wearing a sleeve and/or gauntlet daily can make a difference also. I wear a sleeve daily - low compression - by Lymphedivas.com. They make a variety of colors and patterns that make it more fun and are lighter weight then the prescription ones I have seen. I also wear a compression shirt made byUnderArmour. it helps to alleviate chest and back congestion - and to hold my still remaining breast still, as i refuse to wear a bra or anything that may restrict the lymph flow (like shoulder bags or backpacks or bras). I have had what I believe to be my greatest help from Frequency Specific Microcurrent. There are a limited number of therapists that use this, but I have been so impressed by it! I actually feel the fluid draining - kind of bubbly effervescent - I have bought my own unit, because I believe in it $5,000 worth. If you google Frequency Specific Microcurrent you will find a website that has a link to lists of therapists by state (it treats many other issues also). My therapist recommended that I include essential oil of grapefruit in the massage as it is a lymph system stimulant. She uses only doTerra, saying it is pure enough to take internally I do NOT take it internally, as all essential oils are extremely concentrated and she is the only source I have ever heard make a recommendation to take it internally. I also make a strong tea out of bedstraw (herb available at many health food stores or on line) 1/2 or more cups of dried herb in 1 quart of boiling water steeped over night then strain and drink. It also is a lymphatic stimulant. I have used tapping on the effected area as a stimulant, rebounding (mini tramp), and Kenesio Taping - with what I felt was less success, but I keep them in my arsenal. I encourage those interested to explore these options on line (which is how I found out about most of them). I would be happy to talk further if anyone wishes.

      about 4 years ago
    • alliek78's Avatar
      alliek78

      Thanks ALL for your advice. I was going to PT and am doing what I was told to do, but the pain and swelling still continues. I believe it has to do with my job as I am the only female on the floor with the men doing the heavy lifting and whatnot. My ONC never told me to not lift but after doing research looks like I am NOT suppose to be. So will be talking to ONC on my next 6 week visit!! I wear the sleeve, but since I have lost weight it falls down and doesn't fit like it should. Just wanted to see as I am young and had breast cancer at 33 that maybe someone older may have had something they do to help. The swelling is pretty much my hands and the pain is in my forearm, but sometimes it shoots down my arm from my shoulders.

      about 4 years ago
    • attypatty's Avatar
      attypatty

      Dear Allie78:
      I have truncal lymphedema - that is, it's not in my arm but in my breast and under my arm. I was taught some exercises used to reduce swelling and I find that if I do these every day, at least once but more often when I can, it helps reduce the swelling. I have also found that, for me, wine causes swelling (something about the sulfites) so I avoid wine. The series of exercises is as follows and it's important to do them in this order. They can be done standing or sitting. They should be done in repetitions of 5 or 10 each. With each movement, stretch as far as you can. I have "named" each exercise to make it easier to remember the order.
      1. Wake up. Head rolls - to the right, then to the left.
      2. Where's my coffee cup? Look right, stretching your neck; look left, stretching your neck.
      3. Don't know - Shoulder shrugs - lift the shoulders up to your ears, release.
      4. Oh, well.....Shoulder rolls - roll your shoulders back to front
      5. YAWN!!! Lift your arms to shoulder height, push back your elbows, stretching your pecs and pulling your shoulder blades.
      6. There's my coffee cup! Reach your hands in the air above your shoulders, alternating right and left.
      7. Walk to the table - lift your knees and walk in place, alternating legs.
      8. Drink that coffee - Arm curls - with your elbow tucked at your side, close your hand in a fist and curl your arm upward.
      9. Put down that cup - With your arm tucked at your side, your hand in a fist, pump your arm downward, close to your side.
      10. All done - wrist circles, with your hand open circle your wrist.
      This was taught to me by a lymphedema therapy specialist. It seems to work for me. She said that the lymphatic system is like a pump and these exercises help to pump away fluid when the lymphs are damaged and can't do the job. Also, I was amazed to learn that the lymphatic system ends in the tiniest of drains that reach the skin, so any scar damage can impact it, not just the breast surgery, but also the axillary surgery, even the port surgery.
      Fight On,
      Attypatty

      about 4 years ago
    • gogolf's Avatar
      gogolf

      Here I am again and let's hope this does not answer 3 times. I have a very good Lymphodema therapist so I asked him how someone could find one in another area of the country. He sent me some links for you to try.

      Patients can go to the web sites for LANA (www.clt-lana.org), Norton School of lymphatic therapy (www.nortonschool.com), Klose Training and consulting (www.klosetraining.com), and Academy of Lymphatic Studies (www.acols.com) to find well-trained therapists. In some instances the person may need to call and speak to someone at the school.

      Hope this help, have a nice day, I am off to treatment today, G

      about 4 years ago
    • jenniferk's Avatar
      jenniferk

      I had 21 lymph nodes removed with radical hysterectomy for cervical cancer and 1 year later had bilateral mastectomy because of triple neg breast cancer. I had 3 positive nodes out of the numerous ones that were removed. I also did radiation to pelvic area which kills the lymph nodes and had radiation for the breast cancer. To say the least I dont have many lymph nodes left. I have trouble with swelling in both legs, genital area and left arm. My breast cancer doctors kept sending me to physical therapist that specializes in manual lymphatic drainage massage. I learned to do this massage on my self and family members also learned to help. This treatment was not very helpful. I also have exercises that I do twice daily to help empty the lymph nodes. Physical therapist order specially fitted compression garmets. Still not much improvement with massage, exercise and garmets. My gynecologic oncologist finally sent me to a vascular specialist. This has been wonderful. She went over the list of medications I was on. My doctors had me taking motrin for joint pain and a type of statin for high cholesterol. She took me off both of these and prescribed a flexitouch compression machine that i use daily. The machine works great and now my lymphedema is doing much better. Still have boughts with cellulitis due to the lymphedema but it is much easier to live with. I still do the exercises, massage, wear the garmets etc. but since changing my medicine and adding machine it has made a huge difference. Im in Oklahoma if anyone would like to see Dr. Cassanagra. She is awesome.

      about 4 years ago

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