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Reader Nancy asked this excellent question recently:
..."As I was reading through your earlier blogs I came across your posting about your experience with peripheral neuropathy. Though many of us experience many additional autoimmune effects, the problem of peripheral neuropathy can be one of the worst. The constant search for ways to deal with the daily pain that never goes away can sometimes be overwhelming. I'm sure many of us would love to hear how you have developed coping strategies to deal with the non-stop pain of daily life with this symptom - anything from shoes to medications would be of interest."Peripheral neuropathy and it's uncomfortable symptoms are caused by damage to the nerves that carry information to and from the brain and spinal cord. PN has several specific causes and can cause hundreds of symptoms, as described in this excellent neuropathy fact sheet from NINDS found here.
More than 100 types of peripheral neuropathy have been identified, each with its own characteristic set of symptoms, pattern of development, and prognosis. Impaired function and symptoms depend on the type of nerves -- motor, sensory, or autonomic -- that are damaged. Some people may experience temporary numbness, tingling, and pricking sensations, sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. Peripheral neuropathy may be either inherited or acquired. Causes of acquired peripheral neuropathy include physical injury (trauma) to a nerve, tumors, toxins, autoimmune responses, nutritional deficiencies, alcoholism, and vascular and metabolic disorders. Acquired peripheral neuropathies are caused by systemic disease, trauma from external agents, or infections or autoimmune disorders affecting nerve tissue. Inherited forms of peripheral neuropathy are caused by inborn mistakes in the genetic code or by new genetic mutations. (bolding mine)Sjogren's syndrome related peripheral neuropathy is well-documented, unfortunately. Read this patient fact sheet from the Sjogren's Syndrome Foundation authored by Dr. Julius Birnbaum:
There are many different types of neuropathies in Sjogren's syndrome. These neuropathies can have different causes and may require different diagnostic techniques and different therapeutic strategies. Unlike other autoimmune disorders, in which the neuropathies predominantly cause weakness, the neuropathies in Sjogren's primarily affects sensation and also can cause severe pain. recognition of unique patterns and causes of neuropathies in Sjogren's is important in arriving at appropriate therapies.
- Recognize that neuropathic pain is a chronic disease. Just as most causes of neuropathies and neuropathic pain in Sjogren's do not come on suddenly, reduction of neuropathic pain can take a while.
- Initial and predominant neuropathies in Sjogren's can occur anywhere - in the feet, thighs, hands, arms, torso and/or face.
- Many different symptomatic therapies for neuropathic pain are available. Both physician and patient awareness of potential benefits and side-effects can help tailor an appropriate approach.
- While the class of tricyclic anti-depressants (TCAs) often constitute and first-line tier of therapy in other neuropathy syndromes, the TCAs can increase mouth and eye dryness and therefore are not routinely used as front-line therapies in most Sjogren's patients.
- Electrophysiologic tests may help in the diagnosis of neuropathies affecting larger nerves which are coated by an insulator called myelin. However, neuropathies affecting smaller-fiber nerves that lack this myelin coating cannot be detected with these tests.
- Special diagnostic tests, including the technique of superficial, punch skin biopsies (small biopsies of 3 millimeters and not requiring any stitches), can help in the diagnosis.
- A relatively rare neuropathy can cause significant weakness in Sjogren's patients. In contrast to other neuropathies which develop slowly, this neuropathy can present with very abrupt-onset of weakness. This so-called "mononeuritis multiplex" occurs because the blood flow through vessels which nourishes nerves is suddenly compromised.
- In general, immunosuppresive medications are almost always warranted to treat "mononeuritis multiplex" neuropathy. In contrast, the rol of immunosuppressives is not well-established in other neuropathies, including neuropathies that cause pain but are not associated with weakness.
- Sjogren's patients frequently wonder whether pain associated with a neuropathy means they are at an increased risk for more severe motor weakness. While there are exceptions, if weakness is not present at onset, it most likely will not occur.
- Neuropathic pain can be alleviated and assuaged, although there may initially be a 'trial-and-error" process with different and perhaps multiple agents.
As in the the treatment of all causes of PN, good treatment of Sjogren's related peripheral neuropathy addresses first the optimization of reducing the autoimmune activity of the disease, and secondly focuses on the specific location and severity of symptoms.
For me, PN probably accounts for the pain and burning that I experience in my feet which is more severe at night. Dr. Young Guy and I have discussed this, and since I also experience restless leg syndrome, I am taking medication to ease some of these symptoms. I take Klonopin, having tried and not tolerated other more commonly used drugs for restless leg syndrome.
I also have realized that good socks and excellent shoes are vital to decreasing my foot pain. In our climate here in the Pacific Northwest, good wool socks such as Smartwool brand are particularly comfortable for me. In warmer months, cushiony pure cotton feels best. And, I've reluctantly realized that I need to wear shoes Every. Minute. Of. Every. Day. Here's advice offered by another Sjogren's syndrome patient found in the Sjogren's Self Help Booklet courtesy of the Sjogren's Syndrome Foundation:
...The biggest change I made was my shoes. I found that with shoes that accommodated thick fluffy socks I felt a lot less pain. My personal favourite is SAS® brand, Free Time with Thorlos® walking socks. Wearing socks all the time was really a new concept for me too. I thought wearing even 100% cotton light-weight socks at night would make my feet hotter, but they didn’t and even made me more comfortable. Some people get relief from wearing tight socks. Mild support knee highs might be worth a try and I found these the most helpful.
If my feet are really hurting, I first try soaking them for a while in really cool water. I then try to talk my husband into massaging them for a few minutes before I go to bed since this seems to be my worst time of day. Neutrogena® Foot Cream works well for massage and is really good for dry skin too. The massage often gives me several hours of relief. If anyone needs convincing, just read what the Mayo Clinic says, “A massage helps improve circulation, stimulates nerves and may temporarily relieve pain.”
Treatment suggestion from the Mayo Clinic website include:
- Mild symptoms may be relieved by over-the-counter pain medications. For more-severe symptoms, your doctor may recommend prescription painkillers. Drugs containing opiates, such as codeine, can lead to dependence, constipation or sedation, so these drugs are generally prescribed only when other treatments fail.
- Anti-seizure medications. Drugs such as gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) were originally developed to treat epilepsy. However, doctors often also prescribe them for nerve pain. Side effects may include drowsiness and dizziness.
- Capsaicin. A cream containing this naturally occurring substance found in hot peppers can cause modest improvements in peripheral neuropathy symptoms. Like spicy foods, it may take some time and gradual exposure to get used to because of the hot sensation this cream creates. Generally, you have to get used to the heat before you can experience pain relief. Doctors may suggest you use this cream with other treatments.
- Lidocaine patch. This patch contains the topical anesthetic lidocaine. You apply it to the area where your pain is most severe, and you can use up to four patches a day to relieve pain. This treatment has almost no side effects except, for some people, a rash at the site of the patch.
- Antidepressants. Tricyclic antidepressant medications, such as amitriptyline and nortriptyline (Aventyl, Pamelor), were originally developed to treat depression. However, they have been found to help relieve pain by interfering with chemical processes in your brain and spinal cord that cause you to feel pain. The serotonin and norepinephrine reuptake inhibitor duloxetine (Cymbalta) also has proved effective for peripheral neuropathy caused by diabetes. Side effects may include nausea, drowsiness, dizziness, decreased appetite and constipation.
Transcutaneous electrical nerve stimulation (TENS) may help to relieve symptoms. In this therapy, adhesive electrodes are placed on the skin, and a gentle electric current is delivered through the electrodes at varying frequencies. TENS has to be applied regularly.For a few PN sufferers, the pain and burning can become so severe that it interferes with their ability to function in spite of commonly used treatments. In these instances, some rheumatologist prescribe the use of IVIg: intravenous immunoglobulin therapy:
What is IVIG?IVIG, also called gamma globulin or antibodies, is a highly purified blood product preparation that is derived from large pools of plasma donors. Plasma from approximately 1,000 to 10,000 persons is present in each unit or “lot” of IVIG. While this is a blood product, IVIG available in the United States, is purified and carefully screened to be free of all known transmissible diseases, including HIV, hepatitis, malaria, syphilis and many, many others. This medication is used to treat a variety of neurological and neuromuscular autoimmune disorders that affect the central nervous system, peripheral nerves, neuromuscular junction and muscles.
The Benefits of IVIG:The underlying problem in all autoimmune diseases is often similar. One part of your immune system has decided to attack part of your body, instead of defending your body from bacteria and viruses. While the cause of this damage is unknown, IVIG contains antibodies which are believed to block this attack.
IVIg use specifically for neuropathy in Sjogren's syndrome was the topic of a timely recent Medscape article entitled IVIg for Sjogren's Neuropathy: Worth the Price? by Kevin Deane, MD Jan 17, 2013 found here. Dr. Deane's viewpoint on the issue:
These results suggest that IVIg may be useful in treating some neuropathic manifestations of SS, although the investigators' conclusions are limited as a result of the small sample and the retrospective, uncontrolled nature of the study. IVIg is expensive and has some toxicity, including risk for thrombosis and renal injury; therefore, more data from controlled trials are needed before we can be certain of its precise role in treatment of SS-related neuropathy. Furthermore, clear guidelines on how to classify the various types of SS-related neuropathy and a better understanding of the underlying pathophysiologic mechanisms of SS-related neuropathy may help guide treatment.
Two small studies, read this and this, conducted in 2009 would support the consideration of use of IVIg in treatment resistant PN, although as Dr. Deane noted above, the use of this treatment is not without risk.
I'm fortunate in that my symptoms of PN at this point, while bothersome, are not severe.
Do you struggle with peripheral neuropathy? What advice would you offer to Nancy?