10 Ways to Beat the Chronic Pain of NMOSD

One kind is neuropathic pain, when nerves become overexcited as they transfer information from the spinal cord to other parts of the body. “Patients describe it as a tingling, burning, or electrical sensation, that occurs spontaneously, or by touch or stimuli to the skin,” explains Elias S. Sotirchos, M.D., an assistant professor of neurology at Johns Hopkins Medicine in Baltimore. People with NMOSD can also experience spasticity, when muscles tighten and resist being stretched. Another source of pain, says Dr. Sotirchos, is tonic spasms, which are intense muscle contractions that last for a few minutes.

“没有特定NMOSD止痛药,所以we tend to borrow from other fields, primarily antiepileptic medications or antidepressants,” says Jonathan Howard, M.D., associate professor of neurology at NYU Langone Medical Center in New York City, who often recommends a medication called Lyrica (pregabalin) or Neurontin (gabapentin) for his patients. Dr. Flanagan also uses Tegretol (carbamazepine) for spastic and neuropathic pain. These anti-seizure drugs work by affecting the nerve impulses in the spinal cord to reduce the overactive nerve signaling, Dr. Flanagan explains.

医生也将使抗抑制剂如Cymbalta（Duloxetine）或Elavil（Amitriptyline）等抗抑郁药，以易于进行神经性疼痛。“我们完全不完全理解他们的工作原理，”弗拉纳博士承认。他解释说，一种理论是它们可以增加脑和脊髓中的化学信使，这可能会减少你对疼痛的看法。如抗癫痫，抗抑郁药并不总是对NMOSD的人（在MS中所做的那样），即使其中三分之二服用了多种类型的药物，也是如此。“病变更具破坏性，不要治愈和女士，”弗拉纳曼博士说。

局部麻木代理如Lidoderm（Lidocaine）斑块或OTC Capzasin P（辣椒素）霜可以阻止发起疼痛信号，从燃烧，刺痛的感觉中提供一些缓解，刺痛的感官带来了。“Lidocaine必须规定，并应注意过度使用，特别是在肝脏，肾脏或心脏问题的人们中，因为有些人可以通过皮肤吸收，并且会导致副作用，包括心律失常，”警告博士。通常的药物医生通常别规定神经病疼痛？阿片类药物（可理解）。

“肌肉僵硬可能是一个大问题，”霍华德博士说。医生建议的一个肌肉松弛剂是Gablofen或Lioresal（Baclofen），它进入片剂（通常每天三次）或通过泵，医生永久植入您的身体。泵将药物直接递送到脊髓液，如果口腔使用寿命没有提供太大的浮雕，可能是一个很好的选择。“这种方法也可以造成更少的副作用，如少数镇静，你可以获得更高的剂量，”霍华德博士。

“我有许多患者认为针灸对他们的痛苦有益。当然，它不是永久性的，需要重复，“Sotirchos博士说。但是，他补充说，没有高质量，随机的临床试验，可以支持使用针灸或任何其他类型的非药物治疗。“然而，有许多较小的观察性，受控试验，确实支持这些治疗的理由以及临床经验，”他解释道。底线：针灸和其他非药物治疗为一些NMOSD患者带来了缓解，所以他们值得一试。

TENS machines deliver low-voltage currents via electrodes onto your skin that block nerves from transmitting pain signals to the brain, and some patients have noticed a benefit, says Dr. Sotirchos. Scrambler therapy also uses a device that retrains the brain to not feel pain by sending scrambled electrical signals from areas that hurt the most, replacing pain impulses with non-pain ones. In one study NMOSD patients were able to cut their discomfort in half after 10 days of Scrambler therapy. The caveat: It has to be done by a trained therapist at a clinic and isn’t widely available.

“We always encourage staying active, and feel that it can potentially help with the pain, so participating in physical therapy and exercise are definitely one of the first things we advise,” says Dr. Sotirchos. Gentle exercise routines like yoga or tai chi can stretch stiff muscles and help control the pain from that. A physical therapist can teach you how to move to avoid wear and tear when spinal cord damage has limited your mobility, Dr. Flanagan explains. Physical therapy is particularly useful after an NMOSD attack to speed recovery, adds Dr. Sotirchos.

These types of programs, that typically last several weeks, use a variety of approaches to improve and control pain, explains Dr. Flanagan. You might be prescribed different medications (like anti-seizures or another type of anti-depressant), and will also learn skills from cognitive behavior and mindfulness to help you cope—or even reframe or accept the pain. Most larger hospitals have them. They’re for anyone who suffers from chronic pain, but the techniques they teach seem to work for NMOSD patients too, Dr. Flanagan says.

“CBD油可用于患者帮助他们的痉挛和僵硬，”弗拉纳博士说，他补充说已经批准了多发性硬化症的患者。“再次，它总是一个试验和错误。如果它有帮助，那么他们可以留在它上面，“他说。也就是说，一些Sotirchos博士的患者报告称CBD产品改善了它们的痉挛和神经性疼痛。另一种可能性？医疗大麻（如果它在您居住的合法）。但使用它长期可能带来认知障碍和疲劳，Sotirchos Notes博士。

刚刚批准的药物（Satralizumab），Soliris（Eculizumab）和Uplizazna（Inebilizumab）的目标是防止耀斑 - 并且至少根据临床试验数据，他们对其进行了很大的工作。弗拉纳曼博士说，每次复发都会带来更大的残疾和痛苦，所以如果你可以避免未来的攻击，你可以降低每次复发的风险。这就是犹他大学的研究人员也发现了什么：与未复发的NMOSD患者相比，复发的那些随着止痛药的更多药物，包括止痛药 - 复发后90天增加。