Lipedema

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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 lipedema?

Lipedema is abnormal symmetrical swelling due to accumulations of fat and fluid located in the tissues just under the skin of the hips and legs. It can be inherited and occurs almost exclusively in women.

Common symptoms reported by people with lipedema

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.
Last updated:

Treatments taken by people with lipedema

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

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

(Nuvigil)
Type
Prescription Drug
How many have tried
1
Tried for
fatigue (1)
Treatment name(s)

(Essential Oils)
Type
Procedures
How many have tried
1
Tried for
stress (1)
Treatment name(s)

(BioCurcumin)
Type
Supplement
How many have tried
1
Tried for
lipedema (1)
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Voltaren Gel)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Prozac)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1)
Treatment name(s)
Type
Lifestyle Modification
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
1
Tried for
anxious mood (1)
Treatment name(s)

(Lidocaine Infusion)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

Data from patients with lipedema, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with lipedema

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

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

(Nuvigil)
Perceived effectiveness
for fatigue (2 evaluations)
Side effects
Total evaluations
2
Tried for
fatigue (1)
Treatment name(s)

(Essential Oils)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
stress (1)
Treatment name(s)

(BioCurcumin)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
lipedema (1)
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (3 evaluations)
Side effects
lightheadedness
Total evaluations
3
Tried for
pain (1)
Treatment name(s)

(Voltaren Gel)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Prozac)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
depressed mood (1)
Treatment name(s)
Perceived effectiveness
for pain (1 evaluation)
Side effects
dry hands dry skin
Total evaluations
1
Tried for
pain (1)
Treatment name(s)

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

(Lidocaine Infusion)
Perceived effectiveness
for pain (1 evaluation)
Side effects
Total evaluations
1
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with lipedema, who reported starting treatments within the last 5 years.
Last updated:

Who has lipedema on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 1
30s 2
40s 16
50s 14
60s 6
70+ 1
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 11
20-29 years 4
30-39 years 4
40-49 years 2
50-59 years 0
60-69 years 0
70+ years 0

Sex

Distribution of sex

100% Female
0% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 22
Not Diagnosed 4

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