Lymphedema

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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, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with lymphedema

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
6
Tried for
pain (6)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
4
Tried for
anxious mood (4)
Treatment name(s)

(Voltaren Gel)
Type
Prescription Drug
How many have tried
3
Tried for
pain (3)
Treatment name(s)
Type
Physical Therapy
How many have tried
3
Tried for
lymphedema (3)
Treatment name(s)

(Xanax)
Type
Prescription Drug
How many have tried
2
Tried for
anxious mood (2)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Celexa)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
2
Tried for
depressed mood (2)
Treatment name(s)
Type
Equipment
How many have tried
2
Tried for
lymphedema (2)
Treatment name(s)

(Mobic)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)

Data from patients with lymphedema, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with lymphedema

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (21 evaluations)
Side effects
daytime sleepiness excessive daytime sleepiness (somnolence) 2 more
Total evaluations
21
Tried for
pain (6)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
sleepiness
Total evaluations
2
Tried for
anxious mood (4)
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (3)
Treatment name(s)
Perceived effectiveness
for lymphedema (5 evaluations)
Side effects
heavy sensation in leg(s) peripheral neuropathy
Total evaluations
5
Tried for
lymphedema (3)
Treatment name(s)

(Xanax)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood (2)
Treatment name(s)

(Elavil)
Perceived effectiveness
for pain (3 evaluations)
Side effects
dry mouth tiredness
Total evaluations
3
Tried for
pain (2)
Treatment name(s)

(Celexa)
Perceived effectiveness
for depressed mood (3 evaluations)
Side effects
drowsiness
Total evaluations
3
Tried for
depressed mood (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for depressed mood (8 evaluations)
Side effects
Total evaluations
8
Tried for
depressed mood (2)
Treatment name(s)
Perceived effectiveness
for lymphedema (1 evaluation)
Side effects
Total evaluations
1
Tried for
lymphedema (2)
Treatment name(s)

(Mobic)
Perceived effectiveness
for pain (2 evaluations)
Side effects
Total evaluations
2
Tried for
pain (2)
  • 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.
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Who has lymphedema on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 12
30s 57
40s 178
50s 361
60s 284
70+ 76
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 23
20-29 years 18
30-39 years 44
40-49 years 67
50-59 years 41
60-69 years 23
70+ years 5

Distribution of sex

Sex
Sex Proportion # of patients
Male 55
Female 929

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 263
Not Diagnosed 15

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