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.

Profile picture for John, Volunteer Mentor @johnbishop

I was surprised at how convenient it is to do the sleep study at home with the oximeter. Once you slip it over any of the 3 middle fingers on either hand, you wrap the Velcro used to hold the cord around the finger to keep it in position. Amazing technology to measure heart rate and blood oxygen ( I think ). You do have to take it off for bathroom trips but it has a 10 minute idle period and comes back up when you put it back on.

All in all, much better than an overnight at a hospital. Now just have to wait for results.

John

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Ugh...my oximetry report came back and I think I failed - Abnormal study with sleep-related breathing disorder. Not sure what it means yet but guess I will find out when I have my follow up with the Lymphedema specialist. All my other tests results are in so I'm hoping they schedule an appointment for later next week. I think I'm in for a lifetime of compression socks. I haven't ordered them yet but do have an Epic story with the Mayo Store to share sometime (a nice one).

My right knee x-ray showed advanced degenerative arthritis with medial compartment narrowing, effusion or synovitis, loose bodies posteriorly. So I think the plan is to setup an appointment with orthopedics to discuss options for the knee.

Psst... have you ever seen that cartoon of the man walking down the street with a dark cloud above his head. Out of that cloud is a hand reaching down to the man's head ready to give him a thump with the finger. No dark clouds over my head - I have my Connect friends to get me through the day and besides I'm inside ☺

John

P.S. - Just saw that I now have a Sleep Pulmonary Consultation setup for July 23rd. Ever notice how you you can find a song with lyrics that match what you're feeling - Moving Right Along - Muppets Movie
-- https://www.youtube.com/watch

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@johnbishop John,

What an interesting procedure (thanks for the picture). It is so much better than being at a hospital overnight and being all hooked-up and feeling like you can't move (as well as not being in your normal sleeping environment).

Teresa

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Profile picture for John, Volunteer Mentor @johnbishop

Thought I would do an update before my next round of tests - I met with the Lymphedema Specialist this morning. He was really a great doctor with some serious people skills. He asked more questions and we talked about my right knee. He thought it was something we need to look into even if it wasn't related to the lymphedema and swelling in the right leg. He also explained the swelling was in both legs but was more pronounced in the right leg and ankle. He gave me a good overview of possible problems and some more tests we could have done to determine if there is another issue causing the swelling. I had an x-ray of my right knee this afternoon and a lab test - comprehensive metabolic panel. The lab tests came back already and all were within the normal range. After the x-ray comes back they are going to setup an appointment with orthopedics (I think).

The surprise for me was when he asked me if I snore. After I told him yes, but it's never bothered me. He scheduled a sleep apnea test for Thursday morning. I have to take a "class" for that at the clinic and pick up an oximeter to take home for the test and then bring it back Friday morning. Then I have another test Thursday afternoon in Vascular Medicine but don't know what it is. Then Friday I'm scheduled for an Echocardiogram. He suspects the right side of the heart might not be pumping enough blood (if I remember correctly).

This is kind of one of those days where I'm hoping the light at the end of the tunnel is not a train ☺

John

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Thanks @thankful.

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I was surprised at how convenient it is to do the sleep study at home with the oximeter. Once you slip it over any of the 3 middle fingers on either hand, you wrap the Velcro used to hold the cord around the finger to keep it in position. Amazing technology to measure heart rate and blood oxygen ( I think ). You do have to take it off for bathroom trips but it has a 10 minute idle period and comes back up when you put it back on.

All in all, much better than an overnight at a hospital. Now just have to wait for results.

John

REPLY
Profile picture for John, Volunteer Mentor @johnbishop

Thought I would do an update before my next round of tests - I met with the Lymphedema Specialist this morning. He was really a great doctor with some serious people skills. He asked more questions and we talked about my right knee. He thought it was something we need to look into even if it wasn't related to the lymphedema and swelling in the right leg. He also explained the swelling was in both legs but was more pronounced in the right leg and ankle. He gave me a good overview of possible problems and some more tests we could have done to determine if there is another issue causing the swelling. I had an x-ray of my right knee this afternoon and a lab test - comprehensive metabolic panel. The lab tests came back already and all were within the normal range. After the x-ray comes back they are going to setup an appointment with orthopedics (I think).

The surprise for me was when he asked me if I snore. After I told him yes, but it's never bothered me. He scheduled a sleep apnea test for Thursday morning. I have to take a "class" for that at the clinic and pick up an oximeter to take home for the test and then bring it back Friday morning. Then I have another test Thursday afternoon in Vascular Medicine but don't know what it is. Then Friday I'm scheduled for an Echocardiogram. He suspects the right side of the heart might not be pumping enough blood (if I remember correctly).

This is kind of one of those days where I'm hoping the light at the end of the tunnel is not a train ☺

John

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@johnbishop- Wow,John you are really going through a lot at the moment! It's interesting about the snoring question. I was diagnosed many years ago with sleep apnea and have used a C-pap for years! When I looked into sleep apnea I was surpised how so many illnesses seem to be associated with it. I sleep like a baby now! Sorry to hear about the hot coffee story. Sounds like you handled that very well! My thoughts & prayers go out to you today and am hoping for a good report back! Hang in there my friend! @thankful.

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Profile picture for John, Volunteer Mentor @johnbishop

Thought I would do an update before my next round of tests - I met with the Lymphedema Specialist this morning. He was really a great doctor with some serious people skills. He asked more questions and we talked about my right knee. He thought it was something we need to look into even if it wasn't related to the lymphedema and swelling in the right leg. He also explained the swelling was in both legs but was more pronounced in the right leg and ankle. He gave me a good overview of possible problems and some more tests we could have done to determine if there is another issue causing the swelling. I had an x-ray of my right knee this afternoon and a lab test - comprehensive metabolic panel. The lab tests came back already and all were within the normal range. After the x-ray comes back they are going to setup an appointment with orthopedics (I think).

The surprise for me was when he asked me if I snore. After I told him yes, but it's never bothered me. He scheduled a sleep apnea test for Thursday morning. I have to take a "class" for that at the clinic and pick up an oximeter to take home for the test and then bring it back Friday morning. Then I have another test Thursday afternoon in Vascular Medicine but don't know what it is. Then Friday I'm scheduled for an Echocardiogram. He suspects the right side of the heart might not be pumping enough blood (if I remember correctly).

This is kind of one of those days where I'm hoping the light at the end of the tunnel is not a train ☺

John

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What an impressive view, John @johnbishop !

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Profile picture for John, Volunteer Mentor @johnbishop

Thought I would do an update before my next round of tests - I met with the Lymphedema Specialist this morning. He was really a great doctor with some serious people skills. He asked more questions and we talked about my right knee. He thought it was something we need to look into even if it wasn't related to the lymphedema and swelling in the right leg. He also explained the swelling was in both legs but was more pronounced in the right leg and ankle. He gave me a good overview of possible problems and some more tests we could have done to determine if there is another issue causing the swelling. I had an x-ray of my right knee this afternoon and a lab test - comprehensive metabolic panel. The lab tests came back already and all were within the normal range. After the x-ray comes back they are going to setup an appointment with orthopedics (I think).

The surprise for me was when he asked me if I snore. After I told him yes, but it's never bothered me. He scheduled a sleep apnea test for Thursday morning. I have to take a "class" for that at the clinic and pick up an oximeter to take home for the test and then bring it back Friday morning. Then I have another test Thursday afternoon in Vascular Medicine but don't know what it is. Then Friday I'm scheduled for an Echocardiogram. He suspects the right side of the heart might not be pumping enough blood (if I remember correctly).

This is kind of one of those days where I'm hoping the light at the end of the tunnel is not a train ☺

John

Jump to this post

You have a great sense of humor @lioness. Only in my dreams am I a football player
🙂

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Profile picture for John, Volunteer Mentor @johnbishop

Thought I would do an update before my next round of tests - I met with the Lymphedema Specialist this morning. He was really a great doctor with some serious people skills. He asked more questions and we talked about my right knee. He thought it was something we need to look into even if it wasn't related to the lymphedema and swelling in the right leg. He also explained the swelling was in both legs but was more pronounced in the right leg and ankle. He gave me a good overview of possible problems and some more tests we could have done to determine if there is another issue causing the swelling. I had an x-ray of my right knee this afternoon and a lab test - comprehensive metabolic panel. The lab tests came back already and all were within the normal range. After the x-ray comes back they are going to setup an appointment with orthopedics (I think).

The surprise for me was when he asked me if I snore. After I told him yes, but it's never bothered me. He scheduled a sleep apnea test for Thursday morning. I have to take a "class" for that at the clinic and pick up an oximeter to take home for the test and then bring it back Friday morning. Then I have another test Thursday afternoon in Vascular Medicine but don't know what it is. Then Friday I'm scheduled for an Echocardiogram. He suspects the right side of the heart might not be pumping enough blood (if I remember correctly).

This is kind of one of those days where I'm hoping the light at the end of the tunnel is not a train ☺

John

Jump to this post

Hi Teresa @hopeful33250 - I will let you know how it goes tomorrow morning. My view from the waiting area. Gonda Bldg 18th Floor. First time I came to Rochester in 1966 for IBM I stayed on the 5th Floor of the Kahler Hotel which you can see in the photo.
John

REPLY
Profile picture for John, Volunteer Mentor @johnbishop

Thought I would do an update before my next round of tests - I met with the Lymphedema Specialist this morning. He was really a great doctor with some serious people skills. He asked more questions and we talked about my right knee. He thought it was something we need to look into even if it wasn't related to the lymphedema and swelling in the right leg. He also explained the swelling was in both legs but was more pronounced in the right leg and ankle. He gave me a good overview of possible problems and some more tests we could have done to determine if there is another issue causing the swelling. I had an x-ray of my right knee this afternoon and a lab test - comprehensive metabolic panel. The lab tests came back already and all were within the normal range. After the x-ray comes back they are going to setup an appointment with orthopedics (I think).

The surprise for me was when he asked me if I snore. After I told him yes, but it's never bothered me. He scheduled a sleep apnea test for Thursday morning. I have to take a "class" for that at the clinic and pick up an oximeter to take home for the test and then bring it back Friday morning. Then I have another test Thursday afternoon in Vascular Medicine but don't know what it is. Then Friday I'm scheduled for an Echocardiogram. He suspects the right side of the heart might not be pumping enough blood (if I remember correctly).

This is kind of one of those days where I'm hoping the light at the end of the tunnel is not a train ☺

John

Jump to this post

@johnbishop

Yes, it should be interesting. I've had two sleep studies done at a hospital. Doing one at home sounds much more practical. I hope it all goes well for you. Would be interested in hearing your impressions after you have completed it.

Teresa

REPLY
Profile picture for John, Volunteer Mentor @johnbishop

Thought I would do an update before my next round of tests - I met with the Lymphedema Specialist this morning. He was really a great doctor with some serious people skills. He asked more questions and we talked about my right knee. He thought it was something we need to look into even if it wasn't related to the lymphedema and swelling in the right leg. He also explained the swelling was in both legs but was more pronounced in the right leg and ankle. He gave me a good overview of possible problems and some more tests we could have done to determine if there is another issue causing the swelling. I had an x-ray of my right knee this afternoon and a lab test - comprehensive metabolic panel. The lab tests came back already and all were within the normal range. After the x-ray comes back they are going to setup an appointment with orthopedics (I think).

The surprise for me was when he asked me if I snore. After I told him yes, but it's never bothered me. He scheduled a sleep apnea test for Thursday morning. I have to take a "class" for that at the clinic and pick up an oximeter to take home for the test and then bring it back Friday morning. Then I have another test Thursday afternoon in Vascular Medicine but don't know what it is. Then Friday I'm scheduled for an Echocardiogram. He suspects the right side of the heart might not be pumping enough blood (if I remember correctly).

This is kind of one of those days where I'm hoping the light at the end of the tunnel is not a train ☺

John

Jump to this post

@johnbishop After all those test they should come up with something conclusive I hope that's its all o.k. and not that train at the end of the tunnel Best wishes John Id be interested in the sleep apnea I saw an advertisement for a mouthpiece for people who snore it lets more air in for those with snoring I don't how it works and if does for sleep apnea. But it just looked like a linebacker mouthpiece . Want to become a football player????haha

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