lymphedema. Advice and help.

katiemonaghan87
katiemonaghan87 Posts: 19 Member
edited November 14 in Getting Started
Everytime I start my diet and exercise which is just walking. My leg swells. It's been doing this now for about 14 months. I've only recently been diagnosed with it. It's not played up since October. I started my diet 3 weeks well this is my 4rd week today. And on Wednesday I wanted to get more walking I walked to and from school 3 times a day which it works out 3 hours. I'm resting in between. On Thursday it swelled. On Friday I could not walk on it. It's not just my leg, I get lower back pain and lower stomach pain on my right side which my lymphedema is is my whole right leg. I just don't know what to do anymore. I don't want to give up. I have to excercise to keep my head in diet mode

Replies

  • AnnPT77
    AnnPT77 Posts: 34,607 Member
    I'm so sorry you're going through this! I'm sure that losing weight will help minimize your lymphedema in the long run, but I can see how difficult it would make things in the mean time.

    Are there kinds of exercise you could do that are motivating for you, but involve less stress on your legs? One possibility would be weight lifting exercises (you can start at home with just soup cans or water bottles or something if you don't have access to equipment). There are also seated exercise videos on YouTube. They're mostly designed for older people, but can also be useful for rehab situations.

    Do you know whether it's the impact of walking that aggravates your lymphedema, or possibly the upright posture part (legs below heart)? Possibly there are floor exercises you could do (like leg lifts/movements while lying on your back) that would help keep your head in the game, but be less likely to aggravate your lymphedema. Or if it's impact that's a problem vs. uprightness, maybe a stationary bike?

    Can your doctor refer you for physical therapy or rehab that will help you identify some forms of exercise that will work for you?

    I have several friends who have permanent arm lymphedema after having underarm lymph nodes removed as part of breast cancer surgery. I know that if they are able to move the affected limb regularly, over time that helps manage their lymphedema symptoms (my understanding is that the movement sort of has the muscles "pumping" the lymph around to get it to dissipate).

    I hope you're able to find a solution - hang in there!
  • RaeBeeBaby
    RaeBeeBaby Posts: 4,246 Member
    I would second the suggestion for a doctor referral to PT or a lymphedema specialist. There are also massage therapists who specialize in lymphedema and can help open the pathways for the lymphatic fluid to move (rather than build up).

    Probably a no-brainer, but you might just try googling "exercises for lymphedema support" or something like that.
  • Debmal77
    Debmal77 Posts: 4,770 Member
    I have had my lymph nodes removed. Please see your doctor about compression garments, socks, sleeves. With this condition, it is advised by professionals to keep active.
  • Obxdee
    Obxdee Posts: 25 Member
    I have a compression sleeve for my arm, I wear it on super hot/humid days, as well as with exercise (which does help improve my symptoms). As the post above states, see your Dr, to be properly fit, might also be good to see someone familiar with lymph drainage. I love my sleeves, they are made through a company called lymphdiva, really cute ones! Good luck.
  • KatKat1209
    KatKat1209 Posts: 229 Member
    edited January 2017
    Get some good compression tights - class 2 or 3. Swimming helps a lot as well and is good for improving your physical health in general. Look out for the Sodium in your diet since too much sodium is known for supporting water retention in extremities.
    And definitely go to a specialist to get some more info or treatment.
  • katiemonaghan87
    katiemonaghan87 Posts: 19 Member
    AnnPT77 wrote: »
    I'm so sorry you're going through this! I'm sure that losing weight will help minimize your lymphedema in the long run, but I can see how difficult it would make things in the mean time.

    Are there kinds of exercise you could do that are motivating for you, but involve less stress on your legs? One possibility would be weight lifting exercises (you can start at home with just soup cans or water bottles or something if you don't have access to equipment). There are also seated exercise videos on YouTube. They're mostly designed for older people, but can also be useful for rehab situations.

    Do you know whether it's the impact of walking that aggravates your lymphedema, or possibly the upright posture part (legs below heart)? Possibly there are floor exercises you could do (like leg lifts/movements while lying on your back) that would help keep your head in the game, but be less likely to aggravate your lymphedema. Or if it's impact that's a problem vs. uprightness, maybe a stationary bike?

    Can your doctor refer you for physical therapy or rehab that will help you identify some forms of exercise that will work for you?

    I have several friends who have permanent arm lymphedema after having underarm lymph nodes removed as part of breast cancer surgery. I know that if they are able to move the affected limb regularly, over time that helps manage their lymphedema symptoms (my understanding is that the movement sort of has the muscles "pumping" the lymph around to get it to dissipate).

    I hope you're able to find a solution - hang in there!

    They don't understand how I have got lymphedema. As it came out of blue. I'm gonna try swimming and the excercise you have suggested so thanks for that. Me and husband have bought weights and bars to start our at home gym. It's difficult for me to walk but I pull my self through it even though I cry through it as it painfull.
  • CarrieA180
    CarrieA180 Posts: 903 Member
    My daughter, 27, was diagnosed with primary lymphedema, left leg, at age 8. Her "go to" exercise has always been swimming: swim team, home pool and rehabilitation water therapy. There's alot of benefits from it....A healthy weight with low sodium and low fat diet helped tremendously. Along with all the compression stocking, wraps, therapies and pumps that go with having Lymphedema. :)

    I recommend finding a therapist who specializes in Lymphedema. They will set up a treatment plan for you. Here is a link:

    http://lymphaticnetwork.org/living-with-lymphedema/find-a-lymphedema-therapist
  • AnnPT77
    AnnPT77 Posts: 34,607 Member
    AnnPT77 wrote: »
    I'm so sorry you're going through this! I'm sure that losing weight will help minimize your lymphedema in the long run, but I can see how difficult it would make things in the mean time.

    Are there kinds of exercise you could do that are motivating for you, but involve less stress on your legs? One possibility would be weight lifting exercises (you can start at home with just soup cans or water bottles or something if you don't have access to equipment). There are also seated exercise videos on YouTube. They're mostly designed for older people, but can also be useful for rehab situations.

    Do you know whether it's the impact of walking that aggravates your lymphedema, or possibly the upright posture part (legs below heart)? Possibly there are floor exercises you could do (like leg lifts/movements while lying on your back) that would help keep your head in the game, but be less likely to aggravate your lymphedema. Or if it's impact that's a problem vs. uprightness, maybe a stationary bike?

    Can your doctor refer you for physical therapy or rehab that will help you identify some forms of exercise that will work for you?

    I have several friends who have permanent arm lymphedema after having underarm lymph nodes removed as part of breast cancer surgery. I know that if they are able to move the affected limb regularly, over time that helps manage their lymphedema symptoms (my understanding is that the movement sort of has the muscles "pumping" the lymph around to get it to dissipate).

    I hope you're able to find a solution - hang in there!

    They don't understand how I have got lymphedema. As it came out of blue. I'm gonna try swimming and the excercise you have suggested so thanks for that. Me and husband have bought weights and bars to start our at home gym. It's difficult for me to walk but I pull my self through it even though I cry through it as it painfull.

    It sounds like you are a very strong person. I believe that you will be able to achieve your goals, with that kind of inner determination. I wish you good progress, and a positive outcome! ((hugs))
  • Sofir0403
    Sofir0403 Posts: 1 Member
    I have lymphedema in my left arm and back and wear a compressive sleeve at all times I'm awake. There are compressive sleeves for legs as well. Instead of walking, could you try cycling? I also thing a PT and massage treatment would be good. And when at home ( like watching TV), put the leg up with a pillow, not too soft. hugz
  • OhMsDiva
    OhMsDiva Posts: 1,073 Member
    I have it in both my legs also. Since losing a lot of weight, one leg has gone down some, but the other not so much. It is not painful for me, as much as it uncomfortable. I have been given information on the therapies but I have not checked into it yet.
This discussion has been closed.