Lymphedema in legs

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

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?

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

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

@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.

Compression garments? Are they like corsets?

No like thick stockings up to the knees

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?

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???

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?