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.

Liked by Solo Act

@cindylb

Hello all, I developed lymphedema in my left arm following breast cancer surgery (mastectomy) despite just one lymph node being removed. For the first year following the surgery I had physical therapy and massage therapy and the thing that helped me most was the incredible massage therapist I found. She kept me in pretty good shape, most of the time. I had a hard time convincing the doctors I had lymphedema at all but finally my oncologist noticed a large swelling of my chest wall and arm during a visit and they recommended surgery to remove the extra tissue (and place for the fluid to ‘hide’). I have only the very slightest lymphedema now. I still have to do daily exercises and watch my salt and movement to keep it in check but the surgery resolved (mostly) my issue. The only support I can offer to other lymphedema sufferers is to really investigate massage and diet to help alleviate symptoms. Also, it’s a real and debilitating issue and shouldn’t be brushed aside by doctors or anyone who hasn’t had to suffer with it. Best of luck to everyone with this awful condition. I’m blessed to have mine under control right now.

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Glad to hear that you are under control now. I agree about doctors not taking this too seriously or brushing it aside as regular edema and giving diuretics for it. All the diuretics did for me was mess up my urinary tract! My lymphedema nurse explained that the lymph fluid is different and heavier than the fluid that builds up from regular edema which is usually a circulation or heart related condition. Who knew? She also said that exercise is important. I do a lot of pumping my feet and deep stomach breaths, in the nose and out the mouth. Plus other exercises using the arms. I have rotator cuff damage and my range of motion is limited, but I do what I can do.

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@hopeful33250

@amkaloha

How are you doing with your lymphedema and treatment? We would enjoy hearing from you.

Teresa

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@amkaloha

Thank you for the update. I’m glad to hear that you are making some progress with your current treatment. Is it possible to have someone trained to continue this process when your benefits run out?

Teresa

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@hopeful33250

@amkaloha

How are you doing with your lymphedema and treatment? We would enjoy hearing from you.

Teresa

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Yes, I can get this lymphedema nurse to continue but I have to pay out of pocket.

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@lisalucier

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?

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If you’re on disability, you’re eligible for free Medicare.

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For many years I've had freckle like blotches on my chins. I've also had gout in my right foot 10 or 12 years ago. Off and on since then I've had swelling in my right foot and leg that comes and goes. I also had knee surgery on my right knee to remove some torn cartilage 3 or 4 years before I had gout in the right foot. When I was trying to find out more about my peripheral neuropathy that was undiagnosed I asked the doctor about the blotches and she casually told me it was edema and moved on. I never thought anymore about it. In 2016 I was diagnosed with idiopathic small fiber peripheral neuropathy and during the same time my right foot and leg would swell up during the day and then get better overnight. Connect helped me be more proactive for my PN.

So now that my right leg seems to swell up more and bothers me more I want to learn more about edema and find out how to deal with it. I found some good YouTube videos that gave me a few exercises that I could do to help the fluid build up. I also setup an appointment with my primary care doctor to determine more about the edema in my legs. Specifically I wanted to get a diagnosis as to what was causing the edema and what treatments are available.

I had the appointment with the doctor yesterday and she told me it was lymphedema. After she listened to my heart and lungs, looked at my charts and history, etc. she concluded that she doesn't know the cause but she doesn't think it's related to the heart or kidney because it's mainly only my right leg. She setup an appointment for an X-ray of the right foot and leg which I had today to see if there were any stress fractures or injuries that may be causing the lymphedema. She said if that was negative then they would do an ultrasound of the leg (I think) to check the blood flow. Once they have all the information needed I'm guessing I will get a diagnosis…yup, you have lymphedema and here's the plan.

After my appointment yesterday the doctor printed out a 14 page "A Guide to Lymphedema" that has a lot of information in it that I think will be quite helpful once I can digest it some more. Glancing through it I see 3 exercises that I have been doing for a couple of weeks already so that alone was incentive enough to do them some more and more frequently. I hate compression socks and I sit more than I stand during the day so I've been looking at getting a leg air massager that does the compression in sequencing bottom to top so that I could use it at my desk during the day and while sitting in the evening.

Has anyone tried something similar and have you had good results?

I will update what's next after the doctor gives me the x-ray results.

Thank you! ~ John

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@johnbishop, John:

Thanks for letting us know about the edema and your plans to find some help. I'm glad that you are finding some good exercises to help with that. Looking forward to hearing more about the diagnosis and treatment. I've never had lymphedema myself but several friends have had it after abdominal and/or pelvic surgery where the lymph nodes were affected. I don't suppose that applies to you?

Keep us updated on how you are doing.

Teresa

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@hopeful33250

@johnbishop, John:

Thanks for letting us know about the edema and your plans to find some help. I'm glad that you are finding some good exercises to help with that. Looking forward to hearing more about the diagnosis and treatment. I've never had lymphedema myself but several friends have had it after abdominal and/or pelvic surgery where the lymph nodes were affected. I don't suppose that applies to you?

Keep us updated on how you are doing.

Teresa

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Thanks Teresa @hopeful33250. I don't think mine involves the abdominal or pelvic area but I'm not sure. I was thinking it may be the knee or the ankle due to the surgery on the knee I had back in the 70s to remove some torn cartilage. The surgeon really missed the mark on the knee and cut the wrong side of the knee open and then made the 2 large incisions on the left inner side of the knee to remove the cartilage. I had a spinal tap so was wide awake when he was doing surgery but they had a vertical sheet between my waist and legs so I couldn't see it. What they didn't know was I could see it through the reflection on glass cabinets to the side of the table I was on. I saw the oops and then he peeked around the sheet and told me he cut the wrong side open. Well, I did have it done in South Dakota and there's lots of cowboys there ☺ I love the new patient portal and will be able to see the x-ray once they post it in 48 to 72 hours…not that I can interpret it though.

I will give an update on what they found when they call. The next step if they don't find anything is an ultrasound.

John

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@hopeful33250

@johnbishop, John:

Thanks for letting us know about the edema and your plans to find some help. I'm glad that you are finding some good exercises to help with that. Looking forward to hearing more about the diagnosis and treatment. I've never had lymphedema myself but several friends have had it after abdominal and/or pelvic surgery where the lymph nodes were affected. I don't suppose that applies to you?

Keep us updated on how you are doing.

Teresa

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@johnbishop Yes, the knee surgery might have contributed to your current problem – no doubt about that. It will be good to get the results of the test. I just love the patient portal, even if I don't understand it all, it still is great. I'll be praying that you get good results. (I'll try to avoid having surgery in S Dakota).

Teresa

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Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema – toe clenches, ankle pumps, gluteal squeezes and a few more.

John

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@johnbishop

Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema – toe clenches, ankle pumps, gluteal squeezes and a few more.

John

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@johnbishop Sorry about you lymphedema are you using compression stockings? They help

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@johnbishop

Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema – toe clenches, ankle pumps, gluteal squeezes and a few more.

John

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Thanks @lioness, I do use some compression socks some days but not every day. They are over the calf bamboo fiber mixture, really soft and stretchy, very easy to put on and take off. Of course the doctor thought they weren't good enough. I can't stand the tightness of some of them I have tried. They hurt more than they help from my perspective.

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@johnbishop

Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema – toe clenches, ankle pumps, gluteal squeezes and a few more.

John

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Well, I just got a message on my Mayo patient portal they want to schedule an ultrasound of the lower extremities so I'm guessing they don't think the issue causing the lymphedema is in the ankle.

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@johnbishop

Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema – toe clenches, ankle pumps, gluteal squeezes and a few more.

John

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@johnbishop It could becoming from you back maybe do you have any heart problems? Lung?I hope your Dr.is checking everything ?

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@johnbishop

Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema – toe clenches, ankle pumps, gluteal squeezes and a few more.

John

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@johnbishop Just one step at a time, I suppose. I hope you can get the ultrasound scheduled sooner rather than later! Wishing you well.
Teresa

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@johnbishop

Well, the x-ray results are in for my right foot and ankle but the doctor hasn't contacted me yet so I'm not sure if I still will need the ultrasound of the right leg.

Marked soft tissue swelling about the right ankle. Mild degenerative narrowing of the ankle mortise medially and laterally. Scattered degenerative changes throughout the right ankle, mid and hindfoot and right forefoot most marked at the first MTP joint. Right clot deformities. Tiny plantar and Achilles calcaneal spurs.

Not sure what "right clot deformities" are though so I'm waiting to talk with the doctor and ask him. In the mean time, I do some extra exercises in the morning and during the day to see if I can help the lymphedema – toe clenches, ankle pumps, gluteal squeezes and a few more.

John

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@johnbishop Your exercises all sound good. Keep it up. Teresa

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