Patient Comments: Lymphedema - Experience

Please share your experience with lymphedema.

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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

Lymphedema - Treatment Question: What kinds of treatment did you receive for lymphedema?
Lymphedema - Symptoms Question: Describe the symptoms associated with your lymphedema.
Lymphedema - Diagnosis Question: Describe the events and tests that led to a diagnosis of lymphedema.

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors