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mariwy59
@mariwy59

Posts: 4
Joined: Aug 02, 2017

Lymphedema in legs

Posted by @mariwy59, Aug 2, 2017

I was diagnosed with lympedema in 2007. Due to unforseen circumstances I am now on disability so i cant stand for long periods of time without excruciating pain. I have to change so many things in my daily life but one thing that is bothering me is the pain I feel all the time .Try to do things to put in the back of my mind. My condition seems to be getting worse with the stiffness . I watch sit and fit on TV when can which helps some but the thought of not being able to walk at all has me terrified.

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pamelaann1
@pamelaann1

Posts: 9
Joined: Aug 02, 2017
Posted by @pamelaann1, Aug 2, 2017

Wow…I’m so sorry. Do you have family at home to help you?

mariwy59
@mariwy59

Posts: 4
Joined: Aug 02, 2017
Posted by @mariwy59, Aug 2, 2017

Yes I do but basically I can dress myself and bathe but everything takes a long time to do.

Posted by @lisalucier, Aug 2, 2017

Hi @mariwy59,
I’m so sorry to hear about the pain you’re going through and your concerns for what your condition may hold in the future. I’d like to introduce you to a few other Connect members who have posted messages about lymphedema. Please meet @sauvee @drueann @cindylb @geek_girl @amkaloha @jroberts87 and @barbarah. Hopefully you can all meet here on this thread.

Welcome to the community! What does your doctor say about the stiffness and pain you are experiencing?

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mariwy59
@mariwy59

Posts: 4
Joined: Aug 02, 2017
Posted by @mariwy59, Aug 2, 2017

Right now I dont have any health insurance at this time but I had compression garments made when I was diagnosed.

Solo Act
@soloact

Posts: 63
Joined: Aug 16, 2017
Posted by @soloact, Oct 30, 2017

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

Geek_Girl
@geek_girl

Posts: 10
Joined: Jul 11, 2017
Posted by @geek_girl, Aug 2, 2017

@mariwy59. I am sorry you are having such terrible pain. I have lymphedema in my left leg from missing lymph nodes. My pain increases with the amount of swelling, so I am motivated to try and keep the swelling down. It is time-consuming and sometimes frustrating to manage it. After every surgery it gets worse. After the last surgery, my leg was so swollen I couldn’t bend my knee and my toes were like sausages.

When I was first diagnosed, I went to a specialist that did manual lymph massage and then wrapped my leg toe-to-hip with short stretch bandages. They look like ace bandages, but don’t stretch as much. I had to keep those on all the time for a couple of weeks.

Always use a protective liner under the bandages as they are tough on your skin. I also love the “It Stays” body adhesive for keeping the liner in place on my leg. The wraps/liner tends to slide down over time.

After some of the fluid was forced up out of my leg, I was able to wear over-the-counter compression hose during the day, and wrap my leg at night.

My insurance paid for a graduated compression pump. This pump has been the most helpful for me. There is a long leg sleeve kind of like a blood pressure cuff, but it covers my whole leg. The sleeve fills up with air starting at the toe and gradually going up to the hip. Then the air is released. This forces the fluid up out of my leg and into areas where there are more lymph nodes. I wear this at night while watching TV, then when the swelling is really bad, I wrap my leg for the night, then I wear support hose every day. I even take my pump to the hospital when I’ve gone for surgery because both of my legs get really bad then. I rotate it from one leg to the other. One nurse didn’t know what it was and said she was going to need a doctor’s permission before she would let me use it. I said. “You just try and take it away fom me. You will have a fight on your hands.” Haha. That’s how much it helps me. I already had my surgeon’s permission to use it.

I did not find the massage helped me much.

I think you would need the assistance of a special PT to get a leg pump to fit you. I’ve been using mine for over 10 years and it still works great. You can get different lengths and sizes of sleeve for different body parts, too. I’ve googled my setup, and the machine with full leg sleeve was about $1200 (insurance paid for it). Mine has two “ports” so you could treat two legs at once, but I don’t do that. Just google “compression pump lymphedema” and you will find tons of information and prices. I think you could get a setup for much less than what mine cost.

I have not had good luck getting my insurance to pay for the support hose or bandages. I recently got them to pay for my nephrostomy bandages. My doctor wrote a prescription, and my home health nurse submitted them to Shield. Now that I know a company that works with my insurance, I’ll see if they stock lymphedema supplies. I buy everything online and search every time for the best price.

It gets expensive. The cheapest I have found is Jobst Relief, but they are not attractive. It seems like the price is the same everywhere. I like the thigh-high ones with the silicone dots to keep them up. I have also tried the kind without silicone and use the body adhesive to keep them up. Sometimes the silicone irritates my skin. I don’t like the ones with silicon stripes as they tend to roll down and not stay up. You can buy support hose that are attractive. I have some of those, too, to wear (rarely) with a skirt. I also like the open (vs. closed) toe for most days, especially summer. You can also get petite length, but you really have to shop around to find them. You can also get panty hose, but I think they would be so hard to put on. Use some cheap rubber garden gloves to help putting them on.

You can buy a kit for the wrapping that includes all the right supplies, but you need someone to teach you (or a family member) how to wrap as there is a special technique. As I have done this over the years, I’ve learned how to wrap with just a liner, body adhesive, bandages, and paper tape to hold the bandages in place. The kits also come with a cotton padding, which I rarely use. I don’t have to wrap my toes now either. That takes a while.

I am not sure that if you have vascular edema if the process is the same. People with heart problems have vascular edema. Maybe someone here knows about that. I think common treatments include lasix pills to reduce fluid retention and, keeping the limb elevated, and support hose. I don’t know about the pump.

Sometimes I use aspercreme with lidocaine on the skin where it hurts the worst.

Let me know if you have other questions. I think I’ve tried or investigated everything. Haha

I hope you can find some relief.

Parus
@parus

Posts: 1018
Joined: Jul 14, 2017
Posted by @parus, Aug 3, 2017

Compression garments? Are they like corsets?

mariwy59
@mariwy59

Posts: 4
Joined: Aug 02, 2017
Posted by @mariwy59, Aug 3, 2017

No like thick stockings up to the knees

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Posted by @lisalucier, Aug 16, 2017

Hi, @mariwy59. Just wanted to check in with you and see how you are doing. You’d mentioned you had lymphedema and a lot of pain. How is that going?

amkaloha
@amkaloha

Posts: 62
Joined: Sep 02, 2016
Posted by @amkaloha, Sep 20, 2017

Anyone have lymphedema? I would like to discuss the treatment and how to handle it, as I understand there is no cure. Or is there???

Posted by @lisalucier, Sep 25, 2017

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

amkaloha
@amkaloha

Posts: 62
Joined: Sep 02, 2016
Posted by @amkaloha, Sep 25, 2017

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

Posted by @lisalucier, Sep 22, 2017

Hi, @amkaloha. I moved your message to this existing discussion about lymphedema so you can meet @mariwy59, @geek_girl and @pamelaann1. I also thought that @hopeful33250, @sauvee, @paminmichigan and @cindylb might have some thoughts for you.

@amkaloha, what aspects of the treatment for lymphedema would you like to discuss?

Posted by @hopeful33250, Oct 26, 2017

@amkaloha

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

Teresa

amkaloha
@amkaloha

Posts: 62
Joined: Sep 02, 2016
Posted by @amkaloha, Oct 26, 2017

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.

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