1. < Heart & Blood Health

Lymphedema in legs

Posted by mariwy59 @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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pat814 | @pat814 | May 29, 2023
In reply to @mariwy59 "Right now I dont have any health insurance at this time but I had compression garments..." + (show)
@mariwy59

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

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Check into whether there is a Lymphedema Clinic near you. Trained OT/PT’s can treat this condition. Manual drainage massage, compression bandaging leading to being fitted for compression stockings. They also use a lymph pump on both legs to move the fluid.

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pat814 | @pat814 | May 29, 2023
In reply to @amkaloha "I know you think I have been sleeping after writing this message! LOL Actually I do..." + (show)
@amkaloha

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

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So sorry for your frustration with getting local help in treating your lymphedema. I live on Florida’s east coast. Fortunately my primary care doc diagnosed me with lower legs lymphedema. I was referred to Space Coast Lymphedema Clinic in Viera, Florida. It was only 1/2 hour from my home. That was helpful when I was going 2-3 times a week. Documentation including measuring my legs before and after using the Lymphapress. After a few months my insurance approved the purchase of a pump with two thigh high boots. I now use the pump after dinner each night for an hour. In the morning, after showering I put on the thigh high open toe compression stocking. Those two things have kept the swelling of the lower extremities at bay.

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spudmato | @spudmato | May 21, 2022

All of the earlier replies are great.
If al all possible, I suggest regular exercise to aid in the treatment of your lymphedema.
Walking may be too difficult, but it may be possible to do floor exercises, or aerobic on a stationary bike.
Compression stocking can be tricky:
the compression (usually in your apparent situation 20/30 would be a correct, but no higher without your doctor's approval). there are a number of accessories to help in putting on these stockings with buying the zippered kind. there are special gloves (only about $8.00) from Sigvaris, and if you put your hand on the inside to the beginning of the heel and invert the socks, grabbing the sock at the heel they are easy to put on, here is a utube link:


The key to the pneumatic machine is to use it EVERY day for ever for an hour; no cure, but you legs will improve, and be more manageable. I do, and have.
I have pain (not as severe as you, when the swelling is higher, but the stocking, and the machine have been quite helpful.

Good luck.

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perry1 | @perry1 | May 20, 2022
In reply to @colleenyoung "Hi @perry1, here is the discussion about lymphedema that I wanted you to see. Do you..." + (show)
@colleenyoung

Hi @perry1, here is the discussion about lymphedema that I wanted you to see. Do you know the cause of the lymphedema you are experiencing?

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Maybe because received radiation as a child for unknown reason.

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perry1 | @perry1 | May 20, 2022
In reply to @lioness "@johnbishop Your funny John I had a fracture ankle and besides swelling it never lasted like..." + (show)
@lioness

@johnbishop Your funny John I had a fracture ankle and besides swelling it never lasted like yours I can hear your frustration could it becoming from your back?Sciatica?Just guessing hope they find out soon for you Does ice help it any? Keep in touch

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Have you ever suffered from gout?

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spudmato | @spudmato | Apr 26, 2022

Your doctor should specify the amount of compression in the socks: 10/15/ 20/30, or 40.
The compression stockings "do not blow up, the are "graduated" for the top to bottom or visa versa.
What "blows up" is a pneumatic machine with sleeves that is available to alleviate some of the issues, but nothing cure the condition.
Both the machine and the stockings are a great aid.
With a prescription, the government will pay for the unit.

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spudmato | @spudmato | Apr 26, 2022
In reply to @perry1 "thank you. will insurances pay for pneumatic machine?" + (show)
@perry1

thank you. will insurances pay for pneumatic machine?

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Yes with a Doctor's script.
My unit is from Tactile Medical.

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olg1 | @olg1 | Oct 24, 2021

God bless you You are so brave thanks for sharing your experience Just know you’re loved and supported

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jldavis823 | @jldavis823 | Oct 24, 2021

This is the pump I bought used
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jldavis823 | @jldavis823 | Oct 24, 2021
In reply to @perry1 "Does insurance pay any of the cost? for the compression device?" + (show)
@perry1

Does insurance pay any of the cost? for the compression device?

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If you have a prescription for one, insurance may pay for it. Usually it’s for a temporary rental unit. I found mine ( by Flowtron) on EBay for under $100. There is one on EBay now for $49, but it’s incomplete. It doesn’t have the air tubes or leg garments. There are other manufacturers, Devon, Circulaflow, but Flowtron is the one used by most hospitals. After rental, many companies sell them used. Hope that helps.

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