Questions to those who have lived with Lymphedema

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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Re: Questions to those who have lived with Lymphedema

Postby blubrdfrend » Sun Oct 07, 2012 10:34 am

I am sorry that you have waited so long for a reply. I have lymphedema in one leg. I have had it for most of my 66 years. I am not sure how to answer the question about pain. There is always discomfort. If I am up for long periods of time I will pay for it with pain. For years I was able to work and function at an almost normal level. The size of my leg did hinder me at times. The knee did not bend and the garments are a stinking nightmare. My biggest problem with the garments is behind the knee. Also I have some loss of feeling due to surgery. If the garment becomes wrinkled I will not feel it until it is embedded in the leg. I think that I must have become accustomed to the discomfort of daily life. I do not walk as much as in earlier years. I use a wheel chair for quilt shows and museums. I have a scooter that I use in the yard. My brother (a blessing) brought a small trailer that fits behind the scooter. You will find that there are many things that will make your life easier.

I do not take prescription medication for pain. I use only ibuprofen now. When the time comes I am sure that I will use prescription drugs to make my life manageable. I have a handicap sign for my mirror. Your doctor will write you an order to take to the tax office. I do not use the car tags that show handicapped.

I wash my stockings and wraps in Dawn dish washing liquid. I use them until the stretch is gone. I just hate to answer the shoe question. That has been my biggest problem for years. I have been ordering through www.zappos.com. There may come a time when their shoes won't fit. There is also www.oddshoe.org. I have not been able to find my opposite. I buy my shoes to fit the lymphedema foot. I use innersoles and pads in the other shoe. I also wear a sock that is long enough to fold back over my foot from the toe. This provides and extra layer to fill the shoe. I have tried buying two pair of shoes but it breaks my stingy heart to throw the other pair away.

I am hoping that your leg will improve to the point that lymphedema will not rule your life.
Betty
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Re: Questions to those who have lived with Lymphedema

Postby patoco » Sun Oct 07, 2012 2:13 pm

Hey Diana :!: :!:

Super thanx to you Betty for replying.

I was on bed rest yesterday and decided to sneak on today....trying to get the surgery spots healed up.

The pain situation Diana is pretty much of an individual thing, based on the persons lymphedema, what stage, where it is, other co morbidities etc. My LE is rather extensive and in my forties onward have had to deal with unbelievable pain. Before that, not so much.

I am on pain meds now and have been for about four years now. My lymphedema was also complicated by lymphoma that I was first diagnosed with in 1995 and rediagnosed with several times since.

By all means, do get a disabled parking sticker if you can.

I may not be on much in the coming week, but there is always someone checking on things and believe me Betty is great and has a wealth of personal experience and of knowledge on LE, so she can readily answer your questions.

Pat
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Re: Questions to those who have lived with Lymphedema

Postby blubrdfrend » Sun Oct 07, 2012 8:12 pm

We love you, Pat. You are making the world a better place for those of us with lymphedema.
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Re: Questions to those who have lived with Lymphedema

Postby patoco » Wed Oct 10, 2012 9:45 am

Hey Diana

I still can't imagine standing working two jobs with LE. I have done that too, but they were all sitting.

Diana, before I forget, please don't use vaseline. Since it has petroleum in it, it will clog the skin pores, hold heat in and general is contraindicative with lymphedema, It also really doesn't do anything to "restore" skin health.

Try getting Eucerin or a store brand lotion that is the same. Those should have zinc as well as many good herbal ingredients to help with the skin health. I would also try to get one that had aloe in it...super good for the skin.

The ibuprofen I used to take was over the counter.

I don't take it anymore as it stopped working, but also I found it actually did cause some swelling in and of itself. I researched this and found that nsaid's all have that in common. (Non-steroidal anti-inflammatory drug). Take a look at these pages:

http://www.osteoarthritisblog.com/osteo ... cts-edema/

http://www.netwellness.org/question.cfm/24596.htm

http://www.medscape.org/viewarticle/422939_3

Pat
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Re: Questions to those who have lived with Lymphedema

Postby blubrdfrend » Fri Oct 12, 2012 11:15 am

Diana, I use store brand ibuprofen. I am a thrifty person (cheap). My friends say that I am cheap except when purchasing fabric. I try to buy the best fabric so that I can cut it up and sew it back together! Your grandmother probably did it too! I use the eucerin creme on my leg. I have two places that get very dry and scaly. There is one on each side of my ankle where there is a deep crease. Diana, you will need to find a job that has much less standing and walking involved. As time passes it will become harder and harder to stand. I remember the time when I thought that I would always be able to walk comfortably. My family physician told me that the time would come when I will be unable to walk. I didn't believe it then. Now as time passes I am able to see that he is right. I was able to walk comfortable until I was in my 50's. I am now approaching 70 and I have to prepare for the next days events. I rest and prop my leg the day before and combine the activities that I will try to accomplish. If I walk too long or too far I usually pay the next day.
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