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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I have had very swollen ankles and legs with no explanation other than possible inherited from my grandmother whose feet were truly in awful shape. I was told to wear compression stockings at the highest compression but I was not told why or given a diagnosis. Several years have passed and the increase in my right leg is enough that people stare or even make comments. Recently I was looking for something on the internet and ran across information on lymphedema. Every symptom fit. I asked my doctor and he agreed. I am going to be getting stockings that inflate and deflate to wear for a couple of hours a day and I am not going to try the high strength compression stockings. I have questions and comments related to lymphedema. Is this the correct group to join? I believe my lymphedema happened because of knee surgery. to the right leg. About a year after surgery I had a blood clot in that leg and then swelling began and has stayed with me since that time.

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You are in the right discussion @anncgrl. I have lymphedema also but it was not caused by surgery or a blood clot. When they were diagnosing me I saw a cardiologist who ran some tests to check for clots in the legs and then scheduled a lymphoscintigram to check for blockages in the lymph system. More information on the tests can be found here:

I have been wearing compression socks since being diagnosed about 4 years ago. I do buy the kind with side zippers to make them easier to put on and take off.

Do you have some questions about lymphedema of the legs that you want to ask the members?


thank you. will insurances pay for pneumatic machine?

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


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.


@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?


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.


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.


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.

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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.


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.


All good comment's.
There are a variety of donning aids for he compression stockings, use the one that works for you.
The one you use depends upon weather you have open toe or closed toe.
( switched to open toe recently, they go on more easily (Sigvaris come with a donning aid. The open toe take a bit of getting used to.)
I used the pneumatic machine for a couple of years, and no longer need it.
I find that the "self massage" is helpful for the management of lymphedema. My second therapist taught me how, and gave me the print out to back up the lesson.
I sleep with my legs elevated, and find that they appear normal in the morning; this give me a great start, although the do swell to a degree daring the day.

Good luck.

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