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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@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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@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?v=X8ogbgzmGvY

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@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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@johnbishop- Well John, if this means a C-pap, I have a thought for you. "You must become one with your mask"! Sounds very Zenish, but we can talk later if it comes down to that. I've not seen that cartoon, but your comments remind me of a Beatles tune. "I get by with help from my friends"! We are there for you! Sending you fond thoughts for much optimism. Jim @thankful

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@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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Thanks Jim @thankful - I will let you know after I meet with the doctor to go over all the test results. I'm more worried about my knee right now as it's getting harder and harder to put much weight on it and walk.

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Just wanted to give an update on the lymphedema...

Sigh, I feel like I'm back in the Navy...hurry up and wait, hurry up and wait...I have never had a lot of patience so maybe this is part of my life's experience training to give me more patience. This is week two after all my tests were ordered through vascular medicine and I now have an appointment for July 9th to go over the results. Since the vascular related tests showed no super serious stuff I'm assuming my treatment for the lymphedema is going to be compression socks. I have bought 2 pairs of calf high 15 to 20 mm toe less compression socks with side zipper that I've been using for about a week now. They are fairly easy to get on and off and seem to be helping with the daytime swelling of the leg. I may have to get different ones after I have my consultation with the doctor on the 9th.

He requested an appointment with Sleep Medicine after my abnormal sleep study results but I don't have an appointment yet. He also had requested a followup appointment with Orthopedics after that knee x-ray but it's not looking good for an appointment anytime soon which is a big concern for me now as it's getting harder each day to put any weight on my right leg due to the knee. I switched my exercise bike to elliptical mode because it's less bending for the knee and probably better exercise for me. I have been trying to do 10 to 15 minutes in the morning and in the evening but haven't been getting it done too often in the evening. I think this exercise helps build the leg strength as long as the knee doesn't hurt doing the motions.

Kind of reminds me of the song Patience by Guns N' Roses
-- https://genius.com/Guns-n-roses-patience-lyrics

So I'm hoping for a little patience for all my friends that are in waiting mode including me☺

John

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@johnbishop Yes, we are all there with you, John! The waiting-period is the least liked for me.

Teresa

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@johnbishop Well that tells me it isn't too serious. Cause if it was you would not be waiting, they would of had you in the office ASAP. hang in their and try and do your exercises.. Hang in there till the 9th. It will be here sooner than you know it.. Thanks for the update..
Jackie

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@travelgirl

@johnbishop Well that tells me it isn't too serious. Cause if it was you would not be waiting, they would of had you in the office ASAP. hang in their and try and do your exercises.. Hang in there till the 9th. It will be here sooner than you know it.. Thanks for the update..
Jackie

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Hi Jackie @travelgirl I am happy that the lymphedema issue is not too serious but am concerned about the knee since it's a big problem for me, especially the old man bathroom trips at night. I'm mean if you want to see something funny, picture a 240 lb man gently getting out of bed, almost falling over trying to put pressure on the right leg and trying to do the hop step to the bathroom. I did break out grandma's walker last night but hate to get used to using it. The lymphedema specialist put in for a consultation appointment with orthopedics when I first met with him June 6th and they still don't have a clue as to when it will be scheduled even after the x-ray results of the knee are back and show advanced degenerative arthritis, loose bodies and more. From the little research I've done there has been good success with removing the loose bodies so I'm hoping that may help with my knee but will just have too wait.

Efficacy of arthroscopic loose body removal for knee osteoarthritis
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5774512/

On the bright side...it's Monday and I'm still here!!

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@johnbishop LOL.. your too funny. Old man bathroom trips.. Well I will pray that he can help you and it's an easy fix.. But keep moving as much as you help. I think movement helps the lymphedema if I 'm not mistaken?

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@travelgirl

@johnbishop LOL.. your too funny. Old man bathroom trips.. Well I will pray that he can help you and it's an easy fix.. But keep moving as much as you help. I think movement helps the lymphedema if I 'm not mistaken?

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@travelgirl - All forms of movement are good! I learned a long time ago that it's harder to hit a moving target and I'm taking it to heart ☺

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