Introduction

In this article, we will discuss the long-term prognosis of the condition notalgia paresthetica (NP), as understanding its prognosis is important for both patients and clinicians. The prognosis for NP varies. The condition can last for months to years, and symptom severity and response to treatment are highly variable. Long-term management is important as it can help reduce symptoms and lead to remission. Though NP is not life-threatening, the symptoms can significantly affect your quality of life and lead to pain and discomfort, so seeking appropriate management is important. 

Understanding notalgia paresthetica

Notalgia paresthetica (NP) is a common yet under-reported neurological condition that results in intense itching, pain, burning or tingling sensations between your shoulder blades and spine, with periodic remission and exacerbations. The main symptom of NP is itchy skin between the inner part of your shoulder blade and your spine. In most cases, only one side of the back is involved, although both sides may be affected. The name of the condition is derived from ancient Greek with ‘norton’ meaning back and ‘algia’ meaning pain. The disease is more prevalent in adults and more common in those assigned female at birth (AFAB). The underlying cause of NP has yet to be determined, though it is known to be a sensory neuropathy caused by alteration, irritation and damage to certain spinal nerves. 

The damage to these nerves can arise due to nerve entrapment, compression by muscle fibres or irritation/impingement from degenerative changes in the spine, for example, osteoarthritic changes, kyphosis or skeletal hyperostosis. Most people with NP develop a coloured patch (area of hyperpigmentation) on their skin, believed to be a result of constant rubbing or scratching or due to neurogenic release of substance P (a protein made by neurons) into the skin. In this area, the condition can last months to years. Risk factors for the condition are older age, posture and spinal issues, as these factors increase the risk of nerve compression and irritation.¹

Long-term prognosis

The course of NP varies. It is typically chronic, meaning you can experience symptoms for a long time, with symptoms persisting for a few months to years. While NP is not life-threatening, it can significantly affect your quality of life due to symptoms that cause pain and discomfort. 

There is a high degree of variability in severity among individuals, and there is a potential for symptoms to wax and wane over time. Treatment can reduce/alleviate symptoms, but responses to treatment are variable between patients, so it will be more effective for some than others. Some individuals may experience recovery as the condition goes away with time (remission). Possible complications of NP include skin changes from chronic scratching.^1,2

Managing symptoms

NP is a difficult condition to treat, and management remains a challenge; while a wide range of treatment options exist, their efficacy varies significantly in different individuals, so treatment plans vary greatly between patients. While treatments can help manage the symptoms of NP, there is currently no cure. 

Treatments include: 

• Oral medications such as gabapentin, which can treat itching 
• Antihistamines (drugs often used to relieve symptoms of allergy) can also reduce scratching and improve patients' sleep 
• Topical medications (like creams, lotions and gels) that can be prescribed for NP include capsaicin (a reported 70% of patients see improvements with capsaicin, though most experienced relapse within a month following treatment)¹ 
• Steroids and anaesthetics (such as lidocaine and prilocaine) 
• Botox injections (botulinum toxin A) can block nerve signals, which can result in some pain relief (decreased itching and hyperpigmentation) in some NP patients
• Transcutaneous electrical nerve stimulation (TENS), in which a low-voltage electrical current is used to provide pain relief and may mildly improve symptoms 
• Electrical muscle stimulation (EMS)
• Spinal nerve block, in which a local anaesthetic and anti-inflammatory agent are applied close to the target nerve(s) to provide pain relief 
• Surgery to decompress cutaneous nerves may eliminate itching 
• Physical therapy, targeted to strengthen paraspinal muscles and stretch pectoral muscles, can show long-lasting symptom improvement 
• Acupuncture, to the paravertebral muscles in the affected area, can reduce itching, though relapse can occur following treatment 
• Stretching and strengthening exercises that elongate the spine and improve posture have led to resolution in some patients¹ 

Due to the wide variability of treatment success in different patients, regular check-ups are important, and treatment plans may need to be adjusted in cases of inadequate response, recurrence of symptoms, or remission. 

Living with notalgia paresthetica

One study documented the lived experiences of patients living with NP. The most common symptom described was a daily itch, with severity ranging from severe to very severe.² Others reported symptoms of skin pain, sensitivity, numbness, tenderness and burning sensations along with symptoms from itching, such as skin discolouration, lumps, bleeding or scabbing. Itching was frequently reported to affect mood, interfere with sleep, and impact daily activities, such as disrupting self-care. Close to half of the participants in the study reported emotional impacts as a result of their NP-related itching; these included feeling irritated or annoyed, and others reported feeling nervous, anxious and emotional. 

The study also highlighted that despite a broad range of available treatments, there remains a need to develop effective therapeutic options to address the symptoms. Most of the patients in the study were not receiving treatment at the time, and some who had received treatment felt it was limited or not helpful, highlighting the need for more effective therapies to be developed.² 

On the other hand, some patients had seen an improvement following treatment, and currently available management options have, in cases, proven to alleviate symptoms. An example of this is the reported improvement seen in 70% of patients taking capsaicin, highlighting the variability in treatment responses seen in NP patients.¹

Summary 

In summary, NP is a chronic (long-lasting) sensory neuropathy that stems from alteration, irritation and damage to certain spinal nerves. NP results in intense itching between your shoulder blades and spine, although other symptoms include pain, burning or tingling sensations, tenderness and numbness. 

Secondary symptoms from scratching can include skin hyperpigmentation, lumps on the skin and bleeding or scabbing. The prognosis for NP is highly variable; while it is not life-threatening, it can significantly impact quality of life and lasts from months to years. 

The current treatments for NP are symptomatic only, so they do not cure NP but can help manage symptoms. Some individuals may achieve remission over time, with symptoms reduced or eliminated following treatment. Others may not experience improvements, as the current treatment options show a broad range of efficacy and may not work for all patients. The lack of definitive treatment and understanding of the condition can affect patients’ quality of life; therefore, future research to better understand the condition and develop effective treatments and therapies is still necessary.