Patient Comments: Lymphedema - Experience


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Comment from: janet, 55-64 Female (Patient) Published: July 16

I was diagnosed 4 years ago with lymphedema and have gone through torture since. This is the 1st thing that has given me honest answers. I used to get swollen legs in my 20s [I am now 59] after a night of drinking beer in the summer but it would go away in a day or 2. This time it started because I started treatment for drug addiction [methadone]. It seems like my skin on my legs is rotting though there is no smell.

Comment from: PattyM, 55-64 Female (Patient) Published: April 02

I have had lymphedema in my left leg for 15 years after lymph node removal from cancer in my groin. I wear compression stocking, have manual lymphatic drainage therapy and use Flexitouch machine most days. I can't wear certain types of shoes because of swelling. I like to travel and have to be careful because of the amount of swelling.

Comment from: Batgirl, 65-74 Female (Patient) Published: December 11

I have had lymphedema since breast cancer diagnosis in 2007 where 34 lymph nodes were removed, 15 of which were cancerous or didn't clear the margins. Right armpit is slightly disfigured. I have done physical therapy at least 6 times over the years when complications developed, usually from overexertion or overuse of my right arm. Pain and tightness occur. I have worn a compression sleeve almost daily and oftentimes a hand gauntlet. I exercise almost daily.

Comment from: Bella, 75 or over Male (Patient) Published: June 28

I contracted MRSA and nearly lost my leg. Now 8 years later I realize that my lymphatic system in my leg was damaged and I have a badly swollen leg from my knee downwards and can't get normal shoes on because of the lymphedema. I realize I should have sued the hospital as the way I was treated was allowing the infection in. I was in hospital for 8 weeks in dreadful pain.

Comment from: Candy, 55-64 Female (Patient) Published: June 26

I was diagnosed in January but have had lymphedema in one ankle since supposedly last August when both my ankles suddenly swelled up after a big move in the hottest part of summer. Didn't think much because the one ankle went back to normal and the other went back about 95 percent but stayed that way. I haven't had any trouble walking until the last few days and very painful legs (both) yet, I'm told the lymphedema is only in my left. I don't know why both ankles swell up yet only one has lymphedema, and now both legs hurt yet still I'm told my right leg was clear. This is a confusing disease to say the least. Originally my own physician told me to soak them in hottest water I can stand, then my physical therapist says no way! No hot baths, hot tubs etc. I don't know about you but I don't take cold showers. I wonder if anyone else is getting mixed answers. I'm sorry but my physician was clueless! That's not good!

Comment from: Barbara, 65-74 Female (Patient) Published: May 17

I have experienced lymphedema since contracting lymphoma 11 years ago. My left leg swells up during the day but overnight goes down a little. What I have noticed is that it is much worse during the summer months.

Comment from: DO, 55-64 Female (Patient) Published: August 23

I found out I have lymphedema in my legs since over ten years ago (after being told I have a bad weight problem). They got so bad I had to have them wrapped during the day and at night I had to use a pump on them. After a few years the swelling went down and I didn't wrap them anymore but now a few years later they have started swelling again and I have had a doctor refer me to a lymphedema clinic and I will go in September. I sure hope they help, my legs hurt a lot and are swollen a lot and now my arm has started. I had to have reverse shoulder surgery that probably caused it in my arm.

Comment from: Kilda, 75 or over Female (Patient) Published: June 21

I have had lymphedema for about 40 years, after surgery and chemotherapy, including removal of lymph nodes in my left groin and thigh for malignant melanoma, which recurred even after that. Now it is probably impossible to see if it has recurred. I would like a checkup as it is over 10 years since I had one, however my general physician has refused. There is nothing I can do. The lymphedema has recently begun to develop red and white thick hard blisters, and the shin bone is painful. I now can barely walk after 2 hip replacements for arthritis and necrosis of the bone through late diagnosis. I am very worried and have very little help, except compression stockings which do not work.

Comment from: Jo jo, 65-74 Female (Patient) Published: September 06

After colon surgery I noticed my legs swelling above the knee but doctors dismissed it and said I was imagining it. I went to several others when a vascular surgeon determined after nuclear medicine tests that it was lymphedema. My legs are painful and I fall and unbalance constantly. But the surgeon says it is caused by my heart, the cardiologist says its lymphedema, nothing to do with my heart, and they have no idea where it came from. The treatments are useless and the swelling is getting worse.


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Comment from: Lillian W., 65-74 Female (Patient) Published: August 09

I have lymphedema in both legs, have had it several years now. Both legs awe swollen, with blisters and redness, my skin feels like an alligator's. Parts of my legs are numb, and at times a blister will burst and get infected. I can't wear shoes, my feet swell so badly. I have done the wraps, the boots, the stockings, everything medical known to be done. I walk with a walker in my home and use a chair when I go out. I hope I have helped someone.

Comment from: nancy, 65-74 Female (Patient) Published: November 16

I had right breast cancer in 2010. I had little trouble with lymphedema until last third of 2015. I had 12 cancerous glands removed. Yesterday I spiked a temperature of 103.4. I had the most miserable night, excruciating pain, burning, swelling and heat. Swelling was 5 inch large in upper arm and 3 inch large in forearm. The doctor put me on Cipro and it is getting better. I should have gone to the emergency room but was too incoherent! It's hard when you live alone.

Comment from: Luika, 65-74 Female (Patient) Published: September 02

I really don't know when the lymphedema started. I diagnosed myself when I read an article. I researched, saw a picture of lymphedema and it was so eerie to be looking at my legs. I have worn black pants for years and can't wear shorts. People stare at my fat and jiggly legs. My husband can't touch my legs because they hurt to be touched. It is so embarrassing to look, so masculine with such huge legs. I made an appointment to see my doctor to begin treatment today.

Comment from: Sparkly Wolf , 65-74 Female (Patient) Published: May 30

After an operation for a hammer toe 10 years ago I had lymphedema in that toe. It's a minor problem but I want to get rid of it if possible as it's unsightly.

Comment from: Jean M., 55-64 Female (Patient) Published: February 12

I have chest lymphedema after breast cancer. I wonder if stress affects my condition and if seriously stressed can cause heart and lungs to fail, and therefore death.

Comment from: MINK, 25-34 Female (Patient) Published: August 20

I developed lymphedema after surgery to remove a lump in my right arm. I continue to have issues but the sleeve I was fitted for by a specialist works. It has been 10 years since the surgery, and the swelling and pain still get so bad that I cry.

Comment from: donna, 55-64 Female (Patient) Published: July 26

I had a Medtronic morphine pump removed and was left with lymphedema.


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