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

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@jldavis823

I have a chronic issue with lymphedema in my left leg. I watch my diet, especially salt, but I have found relief based on a hospital stay. The hospital used what is called a graduated Intermittent Pneumatic Compression Device. It is that small device that pumps air into limb-specific wraps to prevent blood clots. I wear it I my sleep whenever my leg starts to swell and it makes a huge difference. While they make compression devices for lymphedema, the are awkward and expensive. The device I use can be purchased at a fraction of the price and can treat lymphedema on any limb by purchasing the the correct wrap, also inexpensive by comparison. Hope this helps.

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Thank you. What is the price range of the Compression Device?

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@gingerw

@perry1 Tell me about your struggle, if you would? I have lower limb lymphedema, caused by failing kidneys and perhaps my multiple myeloma [undergoing chemo for that].

What have you done for your lymphedema, curious to see if it might be helpful for me! I limit the amounts of fluid intake everyday, and work hard at getting out for a walk or at least moving around, even when my energy level is not very high. A 20 minute walk at a slow pace is better than nothing! No carbonated drinks, as low sodium intake as possible.
Ginger

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My struggle mostly is keeping balance on water gain because it takes the pain and discomfort of lymphedema too a higher level. and this is truly a balancing act because I also deal with CHF and RA. was put on Metolazone [recently] and it is helping..I Have had legs wrapped 3 times. Now on waiting list for lymphedema PT and message. I do wear compression Hoses. climbing my indoors stairs is my exercise. Have been to wound clinic twice too much swelling caused skin break on my leg. Wise to have refill order of Amox-Clav 500 medication for infection to avoid ER visit. Hope this information will help you.

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@gingerw

@jldavis823 Thank you! At one time my nurse practitioner, who is considered my primary care provider, had suggested the lymphedema sleeves. We decided to put them on hold [approval needed from insurance, availability, and cost] and ultimately I decided to not pursue that. I am intrigued by your solution.

Today, every time I gather my walking sticks to get outside, it starts raining! Dang, hope the storm breaks up enough to let me take a stroll!
Ginger

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I found mine second hand from a medical supplier on EBay.

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@jldavis823

I have a chronic issue with lymphedema in my left leg. I watch my diet, especially salt, but I have found relief based on a hospital stay. The hospital used what is called a graduated Intermittent Pneumatic Compression Device. It is that small device that pumps air into limb-specific wraps to prevent blood clots. I wear it I my sleep whenever my leg starts to swell and it makes a huge difference. While they make compression devices for lymphedema, the are awkward and expensive. The device I use can be purchased at a fraction of the price and can treat lymphedema on any limb by purchasing the the correct wrap, also inexpensive by comparison. Hope this helps.

Jump to this post

@jldavis823 Thank you! At one time my nurse practitioner, who is considered my primary care provider, had suggested the lymphedema sleeves. We decided to put them on hold [approval needed from insurance, availability, and cost] and ultimately I decided to not pursue that. I am intrigued by your solution.

Today, every time I gather my walking sticks to get outside, it starts raining! Dang, hope the storm breaks up enough to let me take a stroll!
Ginger

REPLY

I have a chronic issue with lymphedema in my left leg. I watch my diet, especially salt, but I have found relief based on a hospital stay. The hospital used what is called a graduated Intermittent Pneumatic Compression Device. It is that small device that pumps air into limb-specific wraps to prevent blood clots. I wear it I my sleep whenever my leg starts to swell and it makes a huge difference. While they make compression devices for lymphedema, the are awkward and expensive. The device I use can be purchased at a fraction of the price and can treat lymphedema on any limb by purchasing the the correct wrap, also inexpensive by comparison. Hope this helps.

REPLY
@perry1

thank you for the information..I do not feel so alone in this struggle.

Jump to this post

@perry1 Tell me about your struggle, if you would? I have lower limb lymphedema, caused by failing kidneys and perhaps my multiple myeloma [undergoing chemo for that].

What have you done for your lymphedema, curious to see if it might be helpful for me! I limit the amounts of fluid intake everyday, and work hard at getting out for a walk or at least moving around, even when my energy level is not very high. A 20 minute walk at a slow pace is better than nothing! No carbonated drinks, as low sodium intake as possible.
Ginger

REPLY

thank you for the information..I do not feel so alone in this struggle.

REPLY
@anncgrl

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: https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687

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?

REPLY

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.

REPLY
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