New to diagnosis - How do you live with it?

leg pain, leg bleeding, Farrow Wraps, Compression Stockings, cold feet, Reid Sleeve, Restless Leg Syndrome, Leg Cramps, Compression Pumps, Shoes, lower limb lymphedema, secondary leg lymphedema, leg wrapping, Cold Feet, Compression socks, nerve pain, self leg massage, right leg lymphedema

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New to diagnosis - How do you live with it?

Postby cate342 » Thu Jan 03, 2008 2:30 pm

I'm new to this horrible diagnosis of both leg lymphedema. After the initial bandaging to bring down the swelling, how much freedom do you get? I know it depends on severity, but in general do most of you have to wear something all the time? Even nights? & Weekends? Do you ever get time off from wearing compression stuff? Is there any freedom? Any hope of going bare legged for periods of time? Can't believe this..any help is appreciated..Thx.. :( :(
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Postby patoco » Thu Jan 03, 2008 7:03 pm

Hey Cate :)

Super welcome to our family. :!: :!:

Initially, the toughest part would be bringing down the swelling. Once the LE is more managable, you really do have a lot of freedom to do things.

The key to that is to kep it from getting more severe. So wrapping the leg, or wearing a compression garment is important in doing that. Part of my daily ritual includes without exception that daily skin care (application off lotion); and wrapping. I also do self manual massage/lymph node stimulation.

Many people do wrap at night or wear a nightime "sleeve" to help with the swelling. I honestly think that will depend on the severity and type of lymphedema.

But, having said that, I also want to say that until just the last couple years, I have had great freedom in being able to do an incredible array of activities. I gardened, hiked, bowled...all sorts of activities, even with my legs wrapped.

Don't know if you saw our newly revised leg lymphedema page, but you may want to take a look at it. It has much info on self care, wrapping, garments and the like.

Leg Lymphedema ... lymphedema

When you pull up the main website at

scroll way way down and look on the right hand bottom on the index and it will pull up a list of some 130 new pages added within the last three months. The new pages include bandaging, garments, skin care, exercise, diet, treatments, complications.

Look forward to hearing from you and if I can help in any way, just let me know.

I also have lymphedema in both legs...since birth.

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Postby joanne johnson » Fri Jan 04, 2008 12:57 am

Hi Cate,

Welcome ! I have had lymphedema in both legs for about 25 years. I have led a pretty normal life while raising 4 children. Life does go on despite this condition with bandages, swelling and all the other inconveniences. After being newly diagnosed, you have many things to learn. You will learn what you can and cannot do with the bandaging, sleeves and the care that you will need to give you the best quality of life.

Read everything you can, at your own pace from this website. It contains a wealth of information and many caring people who live with the same condition and care about each other. Always listen to Pat, he is the ultimate expert on this subject.

Wishing you lots of luck. You will adjust, just give yourself time to do this. It will get better, guaranteed! :)
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new diagnosis

Postby suzeeq » Thu Jan 10, 2008 2:37 pm

Hi Cate, sorry to hear about your new diagnosis. We all know what you are going through. I am 53 and have had this for 5 years. At first, I just wore a knee high hose, then a thigh high and now a one legged pantyhose. This is a progressive chronic condition and like Pat said, you need to prevent any worse swelling. By not wearing compression hose or wrapping, you will get worse - it's only a matter of time. I wear the compression hose all day. It's the first thing that I put on in the morning. I exercise, then shower, then put on another clean hose. At night I bandage. I didn't have to do this at first, but now I can't stand not to have any compression on. I feel so much better with the compression. Now, so you don't get totally depressed, my life is pretty normal. I am a nurse and work 12 hour shifts at a hospital, part time. I have always used the treadmill and my husband and I just bought an eliptical, so I think it's important to be as physically active as you can be. I am healthy otherwise. The only thing that I can't do is plant flowers in the ground as it's too uncomfortable when I'm on my knees. So now I plant in flower pots. Everything is a balance, and your body will tell you when you have over done an activity. I cook, clean, run errands, all the usual activiities of our lives. I just can't do everything in one day. Have to spread things out. You asked about going bare legged at times. I did at first, but can't do that now. It's just too painful without the compression. I don't wear skirts anymore unless they are almost to the floor, so I'm in pants all the time now. I was thrilled to get a pair of jeans from my daughter for Christmas that actually fit my leg, so now I feel a little more stylish and bought some new tops this week to wear with them. And I also had a consult last night with a professional make up artist to give me some tips on applying make up that is appropriate for my age. I know none of this has anything to do with lymphedema, but my point is, life goes on, and as Joanne said, it will get better. Try to look at all the good things in your life."Good luck and we are all here to help. Susan
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