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

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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
7
Tried for
Pain (7)
Treatment name(s)

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

(Xanax)
Type
Prescription Drug
How many have tried
3
Tried for
anxious mood (3)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
3
Tried for
Pain (3)
Treatment name(s)

(Celexa)
Type
Prescription Drug
How many have tried
3
Tried for
depressed mood (3)
Treatment name(s)

(Effexor XR)
Type
Prescription Drug
How many have tried
3
Tried for
depressed mood (3)
Treatment name(s)

(Nuvigil)
Type
Prescription Drug
How many have tried
2
Tried for
fatigue (2)
Treatment name(s)

(Voltaren Gel)
Type
Prescription Drug
How many have tried
2
Tried for
Pain (2)
Treatment name(s)

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

(Hydrochlorot)
Type
Prescription Drug
How many have tried
2
Tried for
lymphedema (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 (12 evaluations)
Side effects
daytime sleepiness edema (fluid retention) 2 more
Total evaluations
12
Tried for
Pain (7)
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)

(Xanax)
Perceived effectiveness
for anxious mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
anxious mood (3)
Treatment name(s)

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

(Celexa)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
drowsiness
Total evaluations
1
Tried for
depressed mood (3)
Treatment name(s)

(Effexor XR)
Perceived effectiveness
for depressed mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
depressed mood (3)
Treatment name(s)

(Nuvigil)
Perceived effectiveness
for fatigue (4 evaluations)
Side effects
Total evaluations
4
Tried for
fatigue (2)
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
for Pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
Pain (2)
Treatment name(s)

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

(Hydrochlorot)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
lymphedema (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 9
30s 60
40s 173
50s 330
60s 243
70+ 56
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 22
20-29 years 17
30-39 years 42
40-49 years 63
50-59 years 40
60-69 years 22
70+ years 5

Sex

Distribution of sex

94% Female
6% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 233
Not Diagnosed 14

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