Lymphedema in legs

Hi, @amkaloha. Wondering if you could tell us about what treatments you have tried so far for your lymphedema?

I know you think I have been sleeping after writing this message! LOL Actually I do spend a lot of time on my back doing what I have to do to keep this lymphedema in check. And yet it never looks any better. At first the doctor thought I just had swollen feet and legs and gave me a diuretic. That didn't work -- only messed up my urinary tract! After that my left leg swelled so much that a wound opened up and I had to go to the Wound Care Center for treatment. They wrapped my legs and said I needed compression stockings. I couldn't put them on myself, so they suggested farrow wraps and a foot piece, but I could not put them on myself either. They also got me lymph leg pumps which they told me to use one hour twice a day. I do use these once a day, but it is a stretch to use twice a day. I kept asking the doctor if there was a lymphedema specialist I could see. Well it doesn't seem like there are any lymph specialists! So she sent an in-home group to see me. There was an occupational therapist, a physical therapist and a lymphedema nurse. The lymphedema nurse was the only person I needed, but it seems like it was a package deal. Plus, she could only come three times a week. I needed these stockings on every day! And this service only lasted one month. I have tried to find someone who could put my wraps on for me every day (it only takes 15 minutes) but can't find anyone. So now I use the leg pumps but don't get the stockings on, so the fluid travels back down into my feet and legs. I walk with a walker as I have bad arthritis in my knees and also have neuropathy in my feet. I know there must be something that can be done for this, but haven't found anyone who can do it!
Thanks for your concern.
Andrea

@amkaloha

How are you doing with your lymphedema and treatment? We would enjoy hearing from you.

Teresa

Hello all, I developed lymphedema in my left arm following breast cancer surgery (mastectomy) despite just one lymph node being removed. For the first year following the surgery I had physical therapy and massage therapy and the thing that helped me most was the incredible massage therapist I found. She kept me in pretty good shape, most of the time. I had a hard time convincing the doctors I had lymphedema at all but finally my oncologist noticed a large swelling of my chest wall and arm during a visit and they recommended surgery to remove the extra tissue (and place for the fluid to 'hide'). I have only the very slightest lymphedema now. I still have to do daily exercises and watch my salt and movement to keep it in check but the surgery resolved (mostly) my issue. The only support I can offer to other lymphedema sufferers is to really investigate massage and diet to help alleviate symptoms. Also, it's a real and debilitating issue and shouldn't be brushed aside by doctors or anyone who hasn't had to suffer with it. Best of luck to everyone with this awful condition. I'm blessed to have mine under control right now.

Thanks for asking! Right now I am two weeks into a new process of manual massage and leg wrapping. My lymphedema nurse comes on Mon and Thurs and massages both legs then wraps them in about 5-6 layers of compression wraps. She even wraps each toe. I take the wraps off the morning she comes and get my shower. I'd really like more showers but can't manage with the wraps on! She did measurements today and my legs and feet have come down between 5 and 1 cms since the first measurements, so we are finally going in the right direction! Before this I was using farrow wraps and it was like 2 steps forward, one step back, three steps forward, two steps back, etc. I never saw any progress. I also use the leg pumps for 1 hour a day. The only problem is that there is a limit to the amount of time they will give me for this due to Medicare regulations. So we will see how that goes and what I am to do after the time limit is up.

Glad to hear that you are under control now. I agree about doctors not taking this too seriously or brushing it aside as regular edema and giving diuretics for it. All the diuretics did for me was mess up my urinary tract! My lymphedema nurse explained that the lymph fluid is different and heavier than the fluid that builds up from regular edema which is usually a circulation or heart related condition. Who knew? She also said that exercise is important. I do a lot of pumping my feet and deep stomach breaths, in the nose and out the mouth. Plus other exercises using the arms. I have rotator cuff damage and my range of motion is limited, but I do what I can do.

@amkaloha

Thank you for the update. I'm glad to hear that you are making some progress with your current treatment. Is it possible to have someone trained to continue this process when your benefits run out?

Teresa

Yes, I can get this lymphedema nurse to continue but I have to pay out of pocket.

If you're on disability, you're eligible for free Medicare.

For many years I've had freckle like blotches on my chins. I've also had gout in my right foot 10 or 12 years ago. Off and on since then I've had swelling in my right foot and leg that comes and goes. I also had knee surgery on my right knee to remove some torn cartilage 3 or 4 years before I had gout in the right foot. When I was trying to find out more about my peripheral neuropathy that was undiagnosed I asked the doctor about the blotches and she casually told me it was edema and moved on. I never thought anymore about it. In 2016 I was diagnosed with idiopathic small fiber peripheral neuropathy and during the same time my right foot and leg would swell up during the day and then get better overnight. Connect helped me be more proactive for my PN.

So now that my right leg seems to swell up more and bothers me more I want to learn more about edema and find out how to deal with it. I found some good YouTube videos that gave me a few exercises that I could do to help the fluid build up. I also setup an appointment with my primary care doctor to determine more about the edema in my legs. Specifically I wanted to get a diagnosis as to what was causing the edema and what treatments are available.

I had the appointment with the doctor yesterday and she told me it was lymphedema. After she listened to my heart and lungs, looked at my charts and history, etc. she concluded that she doesn't know the cause but she doesn't think it's related to the heart or kidney because it's mainly only my right leg. She setup an appointment for an X-ray of the right foot and leg which I had today to see if there were any stress fractures or injuries that may be causing the lymphedema. She said if that was negative then they would do an ultrasound of the leg (I think) to check the blood flow. Once they have all the information needed I'm guessing I will get a diagnosis...yup, you have lymphedema and here's the plan.

After my appointment yesterday the doctor printed out a 14 page "A Guide to Lymphedema" that has a lot of information in it that I think will be quite helpful once I can digest it some more. Glancing through it I see 3 exercises that I have been doing for a couple of weeks already so that alone was incentive enough to do them some more and more frequently. I hate compression socks and I sit more than I stand during the day so I've been looking at getting a leg air massager that does the compression in sequencing bottom to top so that I could use it at my desk during the day and while sitting in the evening.

Has anyone tried something similar and have you had good results?

I will update what's next after the doctor gives me the x-ray results.

Thank you! ~ John