Help with lymphedema in leg

I had the lymph nodes in my groin removed in 1996. I wore a support stocking when flying for a couple of years and tried to walk as much as possible. After a few years the lymphatic system seemed to find new routes in the leg. Even now, if I'm inactive I find the leg, particularly the ankle, can get slightly swollen. So my advice( subject to medical advice)  is to try and walk for half an hour every day. Best wishes for a speedy recovery.

Mel J

I had the lymph nodes in my groin removed in 1996. I wore a support stocking when flying for a couple of years and tried to walk as much as possible. After a few years the lymphatic system seemed to find new routes in the leg. Even now, if I'm inactive I find the leg, particularly the ankle, can get slightly swollen. So my advice( subject to medical advice)  is to try and walk for half an hour every day. Best wishes for a speedy recovery.

Mel J

I had the lymph nodes in my groin removed in 1996. I wore a support stocking when flying for a couple of years and tried to walk as much as possible. After a few years the lymphatic system seemed to find new routes in the leg. Even now, if I'm inactive I find the leg, particularly the ankle, can get slightly swollen. So my advice( subject to medical advice)  is to try and walk for half an hour every day. Best wishes for a speedy recovery.

Mel J

Have you considered or tried night-time wrapping?  If you haven't, address it with a professional who can teach you how to do it properly.  It does help a lot with drainage overnight when you're less active but typically not standing or using muscles a lot.  

Have you considered or tried night-time wrapping?  If you haven't, address it with a professional who can teach you how to do it properly.  It does help a lot with drainage overnight when you're less active but typically not standing or using muscles a lot.  

Have you considered or tried night-time wrapping?  If you haven't, address it with a professional who can teach you how to do it properly.  It does help a lot with drainage overnight when you're less active but typically not standing or using muscles a lot.  

Lauren,

Congrats on the scan news!  I've been fortunate to only have very slight lymphdema in my arm but it seems like groins can be a little more problematic.  One thing my therapist suggested was swimming.  I think along with the increased activity and blood flow you also get the benefits of the water pressure.  May be worth a try.

Brian

Lauren,

Congrats on the scan news!  I've been fortunate to only have very slight lymphdema in my arm but it seems like groins can be a little more problematic.  One thing my therapist suggested was swimming.  I think along with the increased activity and blood flow you also get the benefits of the water pressure.  May be worth a try.

Brian

Lauren,

Congrats on the scan news!  I've been fortunate to only have very slight lymphdema in my arm but it seems like groins can be a little more problematic.  One thing my therapist suggested was swimming.  I think along with the increased activity and blood flow you also get the benefits of the water pressure.  May be worth a try.

Brian

I had CNLD of right under arm and I get lymphadema in my chest wall (where your side bra strap hits) and my arm.  The chest wall is very uncomfortable and can be quite painful.  Compression garments do not help me much at all.. I find that they can help prevent a flare when traveling, but they do not help at all when I actually have a lymphadema flare up. 

The only way I get rid of it is with my flexitouch.  Its a machine where you have a garment that covers my trunk (hips), shoulder and arm (it would prob be leg and trunk for you) that performs lymphatic massage by pumping air… the garment looks kind of like the michelin man in that you have air chamber rings that go up your whole leg and then air is pumped into the individual rings to perform lymphatic massage.  It's kind of a pain to use, but it def works!  My physical therapist (a lymphadema therapist) recommended it and the flexitouch tech came to my house to fit it to me.  It was all covered by my insurance.  I use it nightly for a 64 minute cycle when I have flare ups.  I highly recommend if you have having lymphadema problems – garments just don't cut it!!

Regarding what hurts or helps cause a flare up – salt (even a little now), too much alcohol, travel, hot and humid weather, overall pushing myself to do too much.  So, II try not to spend too much time outside or get overheated during the summer now, and remember to rest.

Hope that helps!! Feel free to reach out if you want more info on the flexitouch.

I had CNLD of right under arm and I get lymphadema in my chest wall (where your side bra strap hits) and my arm.  The chest wall is very uncomfortable and can be quite painful.  Compression garments do not help me much at all.. I find that they can help prevent a flare when traveling, but they do not help at all when I actually have a lymphadema flare up. 

The only way I get rid of it is with my flexitouch.  Its a machine where you have a garment that covers my trunk (hips), shoulder and arm (it would prob be leg and trunk for you) that performs lymphatic massage by pumping air… the garment looks kind of like the michelin man in that you have air chamber rings that go up your whole leg and then air is pumped into the individual rings to perform lymphatic massage.  It's kind of a pain to use, but it def works!  My physical therapist (a lymphadema therapist) recommended it and the flexitouch tech came to my house to fit it to me.  It was all covered by my insurance.  I use it nightly for a 64 minute cycle when I have flare ups.  I highly recommend if you have having lymphadema problems – garments just don't cut it!!

Regarding what hurts or helps cause a flare up – salt (even a little now), too much alcohol, travel, hot and humid weather, overall pushing myself to do too much.  So, II try not to spend too much time outside or get overheated during the summer now, and remember to rest.

Hope that helps!! Feel free to reach out if you want more info on the flexitouch.

I had CNLD of right under arm and I get lymphadema in my chest wall (where your side bra strap hits) and my arm.  The chest wall is very uncomfortable and can be quite painful.  Compression garments do not help me much at all.. I find that they can help prevent a flare when traveling, but they do not help at all when I actually have a lymphadema flare up. 

The only way I get rid of it is with my flexitouch.  Its a machine where you have a garment that covers my trunk (hips), shoulder and arm (it would prob be leg and trunk for you) that performs lymphatic massage by pumping air… the garment looks kind of like the michelin man in that you have air chamber rings that go up your whole leg and then air is pumped into the individual rings to perform lymphatic massage.  It's kind of a pain to use, but it def works!  My physical therapist (a lymphadema therapist) recommended it and the flexitouch tech came to my house to fit it to me.  It was all covered by my insurance.  I use it nightly for a 64 minute cycle when I have flare ups.  I highly recommend if you have having lymphadema problems – garments just don't cut it!!

Regarding what hurts or helps cause a flare up – salt (even a little now), too much alcohol, travel, hot and humid weather, overall pushing myself to do too much.  So, II try not to spend too much time outside or get overheated during the summer now, and remember to rest.

Hope that helps!! Feel free to reach out if you want more info on the flexitouch.

Hi Lauren,

When I read your post, it brought me to tears because I have lived with almost the exact same thing. I started Sylatron (Pega-Interferon 2b) on 8/12/15 and have had the same issues ever since; however I have never tried or have been offered hydration therapy. All my lymph nodes in my left groin have been removed and my left leg recently has been out of control. Prior to my Metastatic Malignant Melanoma diagnosis, I was an avid runner and worked out all the time. Ever since, I have slowly become very weak and lost the desire to do anything aside from what the physicians have ordered which is comparable to what everyone else on here has been done. I've seen specialists at MD Anderson, Johns Hopkins and Georgetown. Only until recently, was I given the opportunity to get what's called a compression pump. Out of all my specialists, only one provider actually knew about this. I can tell you that the research on it is amazing. And, my insurance covered everything. I literally slide this lightweight boot contraption (it goes up to my thigh). I put a pillow under my leg and sit up and read my kindle. I push the button and it is basically air and compression. It feels like a massage. The compression garmets only prevent fluid. This actually finds pathways to push the fluid out of my leg. I would not have believed it had I not seen it with my own eyes. I do it once in the morning and once in the evening for 30 minutes. My leg is back to the normal size. 

I can tell you, I have tried and still do everything to keep my lymphedmia at bay  I tried watching my salt intake, compression thigh highs, drank tons of water with fresh organic lemons, detox…etc.  If it is out there, I have tried it.  Nothing has worked so well.  To date, I'm still surprised at how many of my doctors have not heard of this  I wasted tons of money on massage for it to only work for a couple of days  although this can be cumbersome (30 minutes at morning and night), I can't believe I went two full years without it!  I do skip days too.  Nobody is perfect.  Anyway, I would be happy for you to contact me for more information because I'm not sure if I should post the information on a bulletin board.  However, if there is anyone who has the same problems that we do, I believe they should know this may be an option.  My email is [email protected]

There are a few other things that I do too that helps and would be happy to share them with you  I would also love to hear about what you may have done to alleviate some of your symptoms.  

To anyone else who have read this post, I would be happy to start a new thread regarding this but although I was diagnosed over two years ago, I still don't really know how to do much on this site.  I tend to read people and what they have to say if I rarely reply or post.  Therefore, if anyone has any advice for me, I'm open to it!

Thank you to everyone for all of your thoughts, insight, questions and advice. Despite the fact that I'm not very active on here, you have no idea how much many of you have helped me in so many ways. 

I keep all of you in my thoughts often.  Keep up the good fight! I was told I wouldn't live the year on 3/6/15 and here I am over two years later!  

Courtney