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Living With Lymphedema

By Edited Nov 13, 2013 2 9

What Is Lymphedema?

I have lymphedema in both legs. I wasn't diagnosed until stage two, which is irreversible. If you have been diagnosed with lymphedema or suspect you have it, you need to know that though there is no cure, with treatment you will feel much better. Following your doctor's plan will ensure that you have some relief from gross swelling in the affected areas. Part of living with lymphedema is understanding what it actually is. It is not to be confused with edema, or venous insufficiency.

The National Lymphedema Network defines lymphedema as " an accumulation of lymphatic fluid in the interstitial tissue that causes swelling" .

The swelling is usually in the arms and legs, but can occur in other parts of the body such as in the neck. Lymphedema can develop when large amounts of protein rich fluid stagnates in tissues because for various reasons (including removal of lymph nodes) the lymphatic vessels or nodes become damaged. The accumulation of this fluid causes tissue channels to enlarge. This decreases the availabilty of oxygen in the transport system and thereby entertains a medium for debris and bacteria to populate. Lymphedema is not the same as venous insufficiency, but sometimes venous insufficiency can worsen enough,usually when untreated, to develop into lymphedema.

What Are The Symptoms of Lymphedema?

Most lymphedema patients first notice swelling that may or may not go away over the course of the day with elevation. A feeling of tightness , heaviness, and fullness in the affected area is also usually reported. Swelling of the arm (s) or leg(s) eventually will not completely go away. Unfortunately in many cases,including mine, lymhedema is first diagnosed as excessive fluid or edema.

The misdiagnosed patient is prescribed a diuretic and admonished to drastically reduce salt intake. This may help for a short while. However, as the lymph vessels become more and more weakened or damaged from the protein rich and debris filled fluid, diuretics will not reverse the fluid retention.

This accumulated fluid is in the interstitial tissues. Left untreated, limbs may become so grossly swollen and tight that the skin cracks,oozing a clear and sometimes sticky fluid. Cellulitus may develop, upon which large doses of antibiotics must be administered. Persons developing cellulitus are at risk for a serious and occasionally fatal illness. Immediate and aggressive treatment for cellulitus is required.

Many  Mornings I Get Off to a Bad Start
Before diagnosis: Photo of my legs and feet after work when using 80 mg of lasix twice a day. I was teaching second grade and on my feet, so my doctor wrote a "must be seated" excuse for my supervisors. Amazingly, this is how my feet and legs looked even after sitting most of the day and wearing compression hose. photo copyright (DMCA) by Jackie D.Kimball

This was my story as my undiagnosed lymphedema marched on for years causing high blood pressure, weight gain from inactivity, and extremely swollen and sometimes cracked feet and legs. My doctors were convinced that the fluid could be treated with diuretics and diet. I was gently scolded for "not truly reducing salt intake". I promised them I was at 700mg a day or less. Bloodwork showed I was at low normal levels of sodium. During the last two years before my diagnosis, my diuretics dosage was steadily increasing. The week I ended up in the hospital with 3+ edema and cellulitus ,my lasix dosage was increased to 160 mg daily with absolutely no decrease in swelling. (As previously stated,diuretics are contra-indicated for lymphedema.) My condition was diagnosed after my five day hospitaliation for cellulitus.

Treatment for Lymphedema

Whether it is one arm, both arms,one leg, or two legs, the so called "gold standard" of treatment for lymphedema is outlined in the National Lymphedema Network's Position Papers. The treatment involves what is called manual decongestive therapy, or MLD. The processs involves stimulation of the lymphatic system by a very light upward and gentle circular massage to the lymph nodes by a certified lymphedema therapist. Additionally short stretch bandaging and gradient compression hose are recommended.

Patients will wear their short stretch bandages for a few weeks,then switch to compression hose or arm sleeves when the lymph fluid is greatly reduced. Others with more advanced cases may wear bandages exclusively.

In my case, my doctor (cardiovascular) didn't think I needed bandaging. I would have to drive too far for massage therapy and I was attempting to work. Bandaging would be done after the lymphatic massage, so he decided to begin with compression hose. He ordered that I be fitted with compression hose ,a very firm 20/30. They are at first uncomfortable, but most patients adapt fairly quickly, as I did.

Additionally I read books, watched videos and read everything I could find on how to do my own lymphatic massage. I wish there was a lymphedema clinic nearby but the closest one is over two hours away. I do my own treatments, and it is now just part of my day, much like a workout plan might be. I can tell a difference when I do not do lymphatic massage on my legs.

Living With Lymphedema

COMPRESSION HOSE-Every day I wear compression knee high or thigh high hose 20/30 lbs of gradient pressure. I'll have to wear them for the rest of my life or until there is a cure, and I do have hope for that. Compression hose (not to be confused with support hose) are very expensive, costing about $30.00 to $70.00 a pair. Though I wear them faithfully, yet I continue to have swelling in my ankles. somedays. Other times the hose start to feel like a vise around my ankles, and becomes very painful. Behind my knees becomes chaffed and painful. I use an aloe vera gel containing lidocaine which is very soothing.

SWELLING-My swelling is worse when I am on my feet for prolonged periods. I must sit when I feel even the slightest degree of swelling, with feet elevated as much as possible. (Such as in a recliner.) At night I must elevate my feet. Presently I use three pillows, but have heard that a wedge is more comfortable, so I'm looking for a good one to try.

EXERCISE-When I exercise, even just walking ,I must still wear my compression hose so that my legs will continue to have enough pressure to pump the fluid out of my legs, and prevent excessive swelling.

Living with lymphedema is not always easy. People stare at my thick hose and my sometimes bulging ankles. If they continue to stare I nicely explain that I have a lymph system disorder that causes swelling. Some are very interested, and at least time spent sitting in my doctor's office or grocery check-out line goes faster!

Dry skin causes itching, especially my legs.I moisturize my legs every night. In the summer, I try not to stress about my cooling bill and kick the air down to 66 degrees so that I won't get a heat rash. I still get a rash occasionally. Lymphedema is more than "nothing", but I don't let it take over my life either!

Finally, I posted the last two pictures because when I was first diagnosed, all I could find was pictures of advanced lymphedema, with very extreme swelling. I saw very few pictures of before and after treatment. (Except for amywilliams.com) I hope that if you have lymphedema you will diligently follow treatment guidelines. Yes, the stockings chafe at times, you feel chained to long pants, and your legs feel like two Greek columns. It is ,however, something that you can adjust to by keeping a positive attitude and aquiring information to help you cope.Knowledge is power. Learn what to do and DO it.

Compression Hose Really Help!
My compression hose, open toe for summer! I have seven different styes of hose in three different colors.

Here (below) you see that my legs and feet do respond to therapy. I will be honest and say that this definitely not the usual, but it does happen. It gives me hope, and boosts my ego as I tell myself,"See,it's not fat...it's lymphedema."

Some Mornings I  See This, But It Doesn't Last
Amazing .



Sep 25, 2010 4:30am
Great article on lymphedema, I have learnt a lot from this that I did not know. Thanks for that. I went to your blog but could not find a follow section so could not follow you with my blogspot.
Sep 25, 2010 9:35am
Great article. I was wondering if you use or have considered any night compression garments? My son has congenital lymphedema in both feet and right ankle and we have found the night garments to be invaluable.
Sep 25, 2010 5:55pm
kchaucer- Thanks for commenting! Right now My docs say that elevation(I use 3 or four pillows) is enough. Down the road I might have to wrap though. Is your son's lymphedem apainful. Mine is, and I haver read different sites that say it is not. what a crock of lies! It is very painful in my feet.
Sep 25, 2010 5:57pm
eileen, thanks for letting me know about my blog problem. My daughter said the same. I'll see whats up tomorrow when I have more time.
Sep 25, 2010 10:09pm
Thank you for the helpful information. I have been treated for vericose veins and venous insufficiency. I will keep a close watch to make sure these other problems do not develop. Thanks!
Sep 28, 2010 5:41pm
Deborah-thanks for commenting! If you have venous insufficiency, I hope you have at least one pair of compression hose for days you are on your feet frequently.(Of course,check with your doctor.)
Oct 29, 2010 9:18am
Thanks for that Jackie. I will have to talk to my partner about this, I will get her to get herself checked out, It sounds as though she has the early stages
Oct 29, 2010 1:27pm
Philtrate, good idea.i wish I had known sooner! In stage one it is sometimes reversable.THANKS FOR READING.
Feb 17, 2011 12:03pm
Oh Jackie, I am so sorry to read this about you. It has to be a very frustrating and painful condition. You will be in my prayers. Peace today, Venetia
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