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
4
Tried for
pain (4)
Treatment name(s)

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

(Ativan)
Type
Prescription Drug
How many have tried
3
Tried for
anxious mood (3)
Treatment name(s)
Type
Physical Therapy
How many have tried
3
Tried for
lymphedema (3)
Treatment name(s)

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

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

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

(TENS Transcutaneous Electrical Nerve Stimulation)
Type
Procedures
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Oxycodone IR)
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 (28 evaluations)
Side effects
excessive daytime sleepiness (somnolence) fluid retention (edema)
Total evaluations
28
Tried for
pain (4)
Treatment name(s)

(Vistaril)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (3)
Treatment name(s)

(Ativan)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
Total evaluations
1
Tried for
anxious mood (3)
Treatment name(s)
Perceived effectiveness
for lymphedema (7 evaluations)
Side effects
heavy sensation in leg(s) peripheral neuropathy
Total evaluations
7
Tried for
lymphedema (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)

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

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

(TENS Transcutaneous Electrical Nerve Stimulation)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Oxycodone IR)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
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?

  • 0 new patients joined this month
  • 176 say lymphedema is their primary condition

Age
Age Proportion # of patients
<20 0
20s 12
30s 53
40s 160
50s 368
60s 347
70+ 113
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 23
20-29 years 19
30-39 years 47
40-49 years 69
50-59 years 44
60-69 years 26
70+ years 6

Distribution of sex

Sex
Sex Proportion # of patients
Male 63
Female 1010

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 284
Not Diagnosed 15

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