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Nerve damage affects 10–20 percent of all people with Sjögren's syndrome and causes tingling, numbness and burning pain. Because damage to the body's smallest nerve fibers is not always visible on standard nerve tests, the condition is often misdiagnosed. The investigation is based on symptoms, blood tests, tear samples and tissue samples from the skin or lip. Treatment is then tailored to the type of nerve damage and can include everything from symptom-relieving pain medications to immunosuppressive treatment and rehabilitation.
Do you have numbness, tingling or a burning sensation in your hands or feet at the same time as you have dry eyes, dry mouth, muscle and joint pain or unusual fatigue? Then the question of Sjögren's syndrome with nerve damage is more than theoretical. For some, paresthesias – that is, tingling, prickling or crawling sensations – are one of the symptoms that ultimately lead to the disease being discovered.
Sjögren's syndrome and nerve damage – can the disease cause paresthesias?
Yes, Sjögren's syndrome can cause paresthesias. The disease is autoimmune, which means that the immune system mistakenly attacks the body's own tissues. Most well-known is the attack on the tear and salivary glands, which leads to dry eyes and mouth, but Sjögren's can also affect peripheral nerves, i.e. nerves outside the brain and spinal cord, and then numbness, tingling, burning pain or sensory disturbances often occur.
Neurological complications affect an estimated 10–20 percent of people with Sjögren's disease. Peripheral neuropathy is a clinically important and recurrent manifestation outside the eyes and mouth.
Why does paresthesia occur in Sjögren's syndrome?
Paresthesia occurs when sensory nerves are irritated or damaged. In Sjögren's syndrome, this is often believed to be due to immune-mediated inflammation, sometimes directly targeting nerve tissue and sometimes via inflammation in small blood vessels that supply the nerves. The result is that nerve signals are altered: ordinary touches can feel strange, and the body can create tingling or burning pain without a clear external cause.
An important explanation is small fiber neuropathy, i.e. damage to thin nerve fibers that transmit pain and temperature. This form can cause clear symptoms even though ordinary nerve conduction studies are normal, which is one reason why nerve damage in Sjögren's syndrome is sometimes missed in healthcare.
How does nerve damage feel in Sjögren's syndrome?
Paresthesia in Sjögren's syndrome can be felt in several ways. Some describe classic tingling in the hands and feet. Others experience burning pain, a feeling of cooling, increased sensitivity to touch or patchy numbness in the face, legs or arms.
The symptoms do not always have to follow the typical pattern of "starting in the toes and moving upwards". In the case of small fiber neuropathy linked to Sjögren's, the symptoms can be more unevenly distributed and sometimes also affect the trunk or face. This means that the condition is easily confused with stress, hyperventilation, B12 deficiency, herniated disc or idiopathic neuropathy, i.e. nerve damage without a known cause. More limited forms of nerve involvement also occur, such as trigeminal neuropathy with numbness, burning or pain in the face, or the more uncommon mononeuritis multiplex, where several individual nerves are damaged more abruptly and cause sudden weakness or numbness in different parts of the body.
How do you diagnose Sjögren's syndrome with numbness and tingling?
When someone presents with paresthesias, the doctor needs first determine whether it is actually neuropathy and, if so, what type. Medical history and neurological examination are the basis: where are the symptoms located, are they symmetrical, is there weakness, are reflexes affected, and is there dryness in the eyes or mouth at the same time? This combination can provide an important clue that it is Sjögren's syndrome with neurological manifestations.
Normal nerve conduction studies and EMG are good for detecting damage to larger nerve fibers. However, if the symptoms indicate small fiber neuropathy, these tests may be normal. In this case, a skin biopsy can be used to measure the density of small nerve fibers in the skin; reduced nerve fiber density indicates small fiber neuropathy.
At the same time, it is necessary to investigate whether Sjögren's syndrome is at the root. Blood tests may include ANA as well as antibodies to SSA/Ro and SSB/La, but negative antibodies do not rule out the disease, especially not in the case of neurological manifestations. If suspicion persists, Schirmer's test for tear production and sometimes lip biopsy from minor salivary glands are often used.
In practice, other common causes of paresthesia also need to be ruled out. These include diabetes or prediabetes, B12 deficiency, folate deficiency, hypothyroidism, excessive alcohol consumption, kidney disease, drug side effects and compression of nerves or nerve roots. This is why a blood test is often a wise first step when tingling or numbness does not go away.
What treatment is there if Sjögren's causes paresthesias?
The treatment depends on the type of nerve damage involved. In neuropathic pain, symptom-relieving drugs are often used, sometimes also other preparations for nerve pain. They do not cure the cause, but can suppress incorrect pain signals from irritated nerves.
If there are signs of active inflammation in nerves or vessels, immunomodulatory treatment may be appropriate. More pronounced peripheral neuropathy, especially mononeuritis multiplex or vasculitis-related nerve damage, may require treatment with cortisone and other immunosuppressive drugs such as rituximab, cyclophosphamide or azathioprine. The choice is guided by the disease picture, severity and how quickly the symptoms develop.
It is also important to treat the entire disease picture, not just the nerve symptoms. Dry eyes, dry mouth, sleep disturbance, fatigue and pain often reinforce each other. When several parts of the disease are taken care of at the same time, everyday life often functions better, even if nerve healing itself can be slow.
For many, rehabilitation is part of the solution. This may include foot care for reduced sensation, balance and strength training, help with pain strategies and adaptation of work if fine motor skills or endurance are affected.
Warning signs you should not ignore
You should seek care if the paresthesias are recurrent, increase over time or are combined with dryness in the eyes and mouth, joint pain, unusual fatigue or swollen salivary glands. The same applies if you experience burning foot pain at night, numbness that affects walking or grip, or if your face starts to go numb.
In case of numbness and tingling, it is reasonable to check, among other things, blood sugar, B12, folate, thyroid tests and inflammation markers, and if autoimmune disease is suspected, also relevant antibodies. Blood tests alone cannot confirm or rule out Sjögren's syndrome, but they are often an important first step. If you already know that you have Sjögren's, new paresthesias may be a reason to request further neurological evaluation rather than wait.
Urgent evaluation is needed in cases of rapidly developing weakness, difficulty walking, urinary retention, visual impairment, or widespread neurological symptoms. In such cases, other serious conditions must also be considered, such as spinal cord involvement or other inflammatory nerve disease.
