Lymphedema

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is lymphedema?

Lymphedema is the accumulation of a fluid called lymph. The lymphatic system carries this fluid through lymph vessels and lymph nodes throughout the body. Swelling may occur when there is an increase in the amount of fluid or due to blockage that disrupts the normal flow.

Common symptoms reported by people with lymphedema

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, insomnia, fatigue, and pain) regardless of condition.
Last updated:

Treatments taken by people with lymphedema

You’ve tried
Treatment name(s)
Type
How many have tried
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
6
Tried for
Anxious mood (6) Fatigue (1)
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
5
Tried for
Insomnia (3) Pain (3)
1 more
Check to add this treatment to your profile
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
5
Tried for
Pain (5)
Check to add this treatment to your profile
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
3
Tried for
Anxious mood (3)
Check to add this treatment to your profile
Treatment name(s)

(Celexa)
Type
Prescription Drug
How many have tried
3
Tried for
Depressed mood (3)
Check to add this treatment to your profile
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
3
Tried for
Depressed mood (2) Anxious mood (1)
1 more
Check to add this treatment to your profile
Treatment name(s)

(Voltaren Gel)
Type
Prescription Drug
How many have tried
2
Tried for
Pain (2)
Check to add this treatment to your profile
Treatment name(s)

(Hydrochlorot)
Type
Prescription Drug
How many have tried
2
Tried for
lymphedema (2)
Check to add this treatment to your profile
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
2
Tried for
Pain (2)
Check to add this treatment to your profile
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
2
Tried for
Anxious mood (1) Insomnia (1)

Data from patients with lymphedema, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Compare treatments taken by people with lymphedema

You’ve tried
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Check to add this treatment to your profile
Treatment name(s)

(Klonopin)
Perceived effectiveness
for Anxious mood (15 evaluations)
Side effects
Drowsy in a.m. Memory and cognition problems 1 more
Total evaluations
16
Tried for
Anxious mood (6) Fatigue (1)
Check to add this treatment to your profile
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (4 evaluations)
Side effects
Depressed mood Dry mouth 1 more
Total evaluations
6
Tried for
Insomnia (3) Pain (3)
1 more
Check to add this treatment to your profile
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Daytime sleepiness Lightheadedness
Total evaluations
1
Tried for
Pain (5)
Check to add this treatment to your profile
Treatment name(s)

(Xanax)
Perceived effectiveness
for Anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
Anxious mood (3)
Check to add this treatment to your profile
Treatment name(s)

(Celexa)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
Depressed mood (3)
Check to add this treatment to your profile
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
Depressed mood (2) Anxious mood (1)
1 more
Check to add this treatment to your profile
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
Pain (2)
Check to add this treatment to your profile
Treatment name(s)

(Hydrochlorot)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
lymphedema (2)
Check to add this treatment to your profile
Treatment name(s)

(Norco)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Total evaluations
2
Tried for
Pain (2)
Check to add this treatment to your profile
Treatment name(s)

(Vistaril)
Perceived effectiveness
for Insomnia (1 evaluation)
Side effects
Total evaluations
1
Tried for
Anxious mood (1) Insomnia (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with lymphedema, who reported starting treatments within the last 5 years.
Last updated:
You’ve tried this treatment.

Who has lymphedema on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 9
30s 54
40s 115
50s 212
60s 137
70+ 39
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 21
20-29 years 17
30-39 years 39
40-49 years 60
50-59 years 38
60-69 years 18
70+ years 3

Sex

Distribution of sex

92% Female
8% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 219
Not Diagnosed 13

These charts show data from lymphedema patients who have completed their condition history
Last updated: