Erythromelalgia

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 erythromelalgia?

Erythromelalgia is a rare disorder characterized by periodic inflammation and blockage of the vessels of the extremities, resulting in skin redness, swelling, and burning pain. It may manifest as a primary disorder caused by genetic mutation or as a secondary disorder due to blood disorders.

Common symptoms reported by people with erythromelalgia

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 erythromelalgia

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

(Neurontin)
Type
Prescription Drug
How many have tried
3
Tried for
erythromelalgia (3)
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
2
Tried for
erythromelalgia (1) pain (1)
Treatment name(s)
Type
Surgery
How many have tried
1
Tried for
pain (1)
Treatment name(s)

(Tylenol with Codeine #3)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)
Treatment name(s)

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

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

(Loestrin 24 Fe)
Type
Prescription Drug
How many have tried
1
Tried for
depressed mood (1) pain (1)
Treatment name(s)

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

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

(Cannabidiol/Tetrahydrocannabinol Balanced Mixture)
Type
Prescription Drug
How many have tried
1
Tried for
pain (1)

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

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

(Neurontin)
Perceived effectiveness
for erythromelalgia (2 evaluations)
Side effects
drowsiness
Total evaluations
2
Tried for
erythromelalgia (3)
Treatment name(s)

(Lyrica)
Perceived effectiveness
for erythromelalgia (2 evaluations)
Side effects
dizziness morning dizziness
Total evaluations
2
Tried for
erythromelalgia (1) pain (1)
Treatment name(s)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

(Tylenol with Codeine #3)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (1)
Treatment name(s)

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

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

(Loestrin 24 Fe)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
Total evaluations
2
Tried for
depressed mood (1) pain (1)
Treatment name(s)

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

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

(Cannabidiol/Tetrahydrocannabinol Balanced Mixture)
Perceived effectiveness
for pain (2 evaluations)
Side effects
brain fog headaches 1 more
Total evaluations
2
Tried for
pain (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with erythromelalgia, who reported starting treatments within the last 5 years.
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Who has erythromelalgia on PatientsLikeMe?


Age
Age Proportion # of patients
<20 1
20s 6
30s 13
40s 16
50s 17
60s 12
70+ 8
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 4
20-29 years 5
30-39 years 12
40-49 years 8
50-59 years 9
60-69 years 5
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 3
Female 67

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 42
Not Diagnosed 10

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