The Pain That Lingers: Understanding Chronic Pain After SJS/TEN
When someone survives Stevens-Johnson syndrome (SJS) or toxic epidermal necrolysis (TEN), the focus in hospital is on getting through the acute illness: healing the skin, protecting the eyes, and preventing infection. Once the skin has regrown and the patient goes home, it is easy to assume the hardest part is over. For many survivors, it isn't. Pain can persist for months or even years after the reaction, affecting the eyes, mouth, skin, and daily life. Chronic pain is one of the least recognized long-term effects of SJS/TEN and understanding it can help survivors get the care they need.1
How Common Is Chronic Pain After SJS/TEN?
Pain during the acute phase of SJS/TEN is expected and usually fades over a few months as the skin recovers. In some people, though, it never fully goes away. A study followed 81 survivors and interviewed them more than a year after their reaction. More than one in three (36%) still had chronic pain, and for these patients it had lasted a median of about 4.4 years.1
Other studies of survivors point in the same direction. In a Canadian study of 17 survivors, about a quarter reported ongoing eye pain or mouth discomfort, over half had persistent itching, and 27% of women experienced chronic vulvovaginal pain.3 A larger US survey of 121 survivors found that long-term problems affecting the skin (84%), eyes (60%), and mouth (51%) were very common, the same parts of the body where survivors in other studies most often reported pain.1,4
Where Does It Hurt?
Chronic pain after SJS/TEN tends to affect a smaller area than the original reaction did. The eyes were the most commonly affected site, followed by the legs, mouth, and feet.1
Pain Location | Survivors Affected |
Eyes | 55% |
Lower limbs | 41% |
Mouth | 38% |
Feet | 38% |
Hands | 28% |
Trunk | 28% |
Upper limbs | 17% |
Genital/perineal area | 14% |
On average, survivors rated their daily pain as moderate (4.7 out of 10), with peaks reaching about 7 out of 10. For most, the pain was not constant: 59% had pain for less than 8 hours a day. It was often worse in the evening, with movement, or in the heat, and it tended to ease with rest or overnight.1
What Does It Feel Like?
Survivors most often described the pain as burning or itching, followed by tingling. Many also experienced pain from light touch or pressure, such as clothing brushing against the skin, which doctors call mechanical allodynia. Pain triggered by cold, by contrast, was essentially absent.1
One striking finding was how strongly the pain was tied to emotion. Survivors rated their pain much higher on emotional descriptors, such as exhausting, dreadful, and depressing, than on physical descriptors like stabbing or electric shock. Pain interfered most with general activity, mood, and work, and less with sleep or walking.1
Who Is Most at Risk?
The severity of the original illness appears to matter. Compared with survivors who were pain-free, those with chronic pain had:1
• A larger area of skin detachment (median 17.5% vs. 9.5% of the body).
• Higher SCORTEN severity scores.
• More ICU admissions (52% vs. 6%).
• More complications during their hospital stay (66% vs. 29%).
• Longer hospital stays (median 21 vs. 11 days).
• Much higher rates of severe emotional distress (72% vs. 12%).
Why Does the Pain Persist?
There are likely several mechanisms involved. The outer layer of skin contains the tiny nerve endings that sense pain and temperature. When this layer detaches and regrows, those nerves are damaged and must regenerate, which could leave them oversensitive.1 Ongoing inflammation, particularly in the eyes and mucous membranes, may also contribute.1
Nerve damage alone, however, does not seem to explain the whole picture. In a follow-up study, the same group tested nerve function in 10 survivors with chronic pain. Half showed damage to their small nerve fibres, but their pain was no different from the half whose nerve tests were normal.2
The emotional impact of SJS/TEN appears to play a major role. Surviving a sudden, life-threatening reaction is traumatic. In a survey, 53% of survivors screened positive for depression, 43% for anxiety, and nearly 20% for post-traumatic stress disorder (PTSD).4 In a recent study where survivors shared their experiences in their own words, many described anxiety, flashbacks, exhaustion, and feeling alone once they left the hospital.5 Researchers have proposed that, for many survivors, chronic pain may be closely linked to post-traumatic stress, similar to what is seen after severe burns.1
This does not mean the pain is “all in your head.” Physical pain and emotional trauma are deeply connected, and both are real and treatable.
Getting the Right Care
Chronic pain after SJS/TEN often goes untreated. Few survivors with chronic pain were taking medications that target nerve pain or mood, and many relied on skin creams (62%) and eye drops (38%) for relief.1 Researchers suggested that treatment should be tailored to the type of pain. Nerve-related symptoms such as burning or pain from light touch may respond to medications used for nerve pain, while pain linked to depression or PTSD may be better addressed with antidepressants or psychotherapy.1
Many survivors also fall through the cracks after discharge. 67% of survivors had eye complications, yet only 6% were being followed by an eye specialist.3 Fear of medications is another barrier: 68% of survivors in a survey study were afraid of taking new medications, and 30% avoided medications prescribed for a diagnosed condition.4 Survivors have described having to coordinate their own care, and many said mental health support should be a routine part of discharge planning.5
When Should You Talk to Your Doctor?
If you have survived SJS/TEN, speak with your healthcare provider if you experience:
• Pain that continues months after your skin has healed.
• Eye pain, redness, dryness, or changes in vision.
• Burning, tingling, or pain from light touch.
• Mouth pain or difficulty eating.
• Genital pain or pain during intercourse.
• Low mood, anxiety, flashbacks, or nightmares.
• Fear of medications that is stopping you from getting treatment.
A specialist such as a dermatologist, ophthalmologist, gynecologist, pain specialist, or mental health professional can help, and your doctor can work with you to identify which medications are safe for you.
Final Thoughts
Surviving SJS/TEN is only the beginning of recovery. Chronic pain affects more than a third of survivors, can last for years, and is closely tied to both the severity of the original illness and its emotional toll. Recognizing that this pain is common and real, and that it involves both body and mind, is the first step toward better care. Proper follow-up and a treatment approach that addresses both physical and psychological needs give survivors the best chance at relief.
References
1. Lefaucheur JP, Valeyrie-Allanore L, Ng Wing Tin S, Abgrall G, Colin A, Hajj C, de Prost N, Wolkenstein P, Ingen-Housz-Oro S, Chosidow O. Chronic pain: a long-term sequela of epidermal necrolysis (Stevens–Johnson syndrome/toxic epidermal necrolysis) – prevalence, clinical characteristics and risk factors. Journal of the European Academy of Dermatology and Venereology. 2021 Jan;35(1):188-94.
2. Lefaucheur JP, Hajj C, Valeyrie-Allanore L, Colin A, Ng Wing Tin S, de Prost N, Wolkenstein P, Chosidow O, Ingen-Housz-Oro S. Involvement of small-diameter nerve fibres in long-term chronic pain after Stevens–Johnson syndrome or toxic epidermal necrolysis. A neurophysiological assessment. Journal of the European Academy of Dermatology and Venereology. 2021 Mar;35(3):e218-20.
3. Olteanu C, Shear NH, Chew HF, Hashimoto R, Alhusayen R, Whyte-Croasdaile S, Finkelstein Y, Burnett M, Ziv M, Sade S, Jeschke MG, Dodiuk-Gad RP. Severe physical complications among survivors of Stevens–Johnson syndrome and toxic epidermal necrolysis. Drug Safety. 2018 Mar;41(3):277-84.
4. Hoffman M, Chansky PB, Bashyam AR, Boettler MA, Challa N, Dominguez A, et al. Long-term physical and psychological outcomes of Stevens-Johnson syndrome/toxic epidermal necrolysis. JAMA Dermatology. 2021 Jun;157(6):712-5.
5. Martin-Pozo MD, Williams EA, Bonnet KR, Kaffenberger BH, Schlundt DG, Phillips EJ. Recovering from Stevens-Johnson syndrome and toxic epidermal necrolysis. JAMA Dermatology. 2026 Jan;162(1):24-30.
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