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.

Interested in more discussions like this? Go to the Lymphedema Support Group.

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

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This is the pump I bought used

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Profile picture for perry1 @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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Does insurance pay any of the cost? for the compression device?

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Profile picture for jldavis823 @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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Profile picture for Ginger, Volunteer Mentor @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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Profile picture for Ginger, Volunteer Mentor @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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Profile picture for jldavis823 @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
Profile picture for perry1 @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

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