someone holding their spine in pain

Ask the Advocates: Coping with Pain

Last updated: June 2022

We asked our advocates how they cope with the pain that comes from living with NMO. We also asked what tips or advice they'd provide to others. Here's what they had to say:

Chelsey Tucker

"The birthplace of my pain caused by NMO can’t be traced back to a singular place inside by body. Instead, my NMO pain has various origins and causes, each requiring something different from me. Sometimes the pain is caused by something I learn to live with, other times, the pain is indicative of something far more serious that requires immediate medical attention. Although complicated to interpret, knowing how to differentiate the various types of pain I’m feeling has been helpful throughout my NMO journey."

Chronic pain

"Chronic pain doesn’t care about my plans, or that my children need their mom. Chronic pain doesn’t care about my job or how I’m going to put dinner on the table at night. Chronic pain has one job and one job only: to be a long-standing, painful addition to my life. Just like living with NMO, chronic pain is something I’ve learned to live with. Damage to my spine has made walking and moving my arms painful. I have searing pain that radiates down my back and spasms that jolt throughout my body. Damage to my optic nerves has caused severe vision issues, and at times, my eyes hurt beyond what many people could ever imagine."

I'm not entirely sure how I do it

"I don’t know how I get out of bed in the morning (mornings are the worst for me), but I do. With every stiff and painful step, I remind myself that the hurt is just doing what it does best: hurting me. My job is to feel it, accommodate it, and take care of myself the best I can. I’d like to say I have it all figured out, but I don’t. Even after 14 years of living with chronic pain, I’m still very much a work in progress. I’m still learning about my limitations and working towards accepting that I have them. I’m learning when to push through and when to rest. I’m learning to ask for help without making it mean I’m a burden to others. And most importantly, I’m proving to myself a little more each day that I’m capable of living a wonderful, meaningful life, while also living with chronic pain."

Emergent and acute pain

"Years of enduring chronic pain has increased my overall pain tolerance, further complicating my ability to interpret the mixed signals my body is trying to communicate. Knowing when my body is screaming for medical attention vs. when I’m experiencing a 'pseudo exacerbation' of symptoms is difficult to do. Seemingly insignificant happenings like becoming overheated, tired, overly stressed, viral, or bacterial illness, or just before my monthly cycle begins, can trigger symptoms that mimic a relapse. Eye pain, vision loss, inability to control my heart rate, and painful spasms throughout my body are just a few of the ways that my NMO responds to unfavorable conditions. While I know that these symptoms usually resolve within 24 hours and are not indicative of new damage, the experience is no less frightening."

Pain that I can't ignore

"Then there is the kind of pain that every NMO patient dreads but can’t ignore. This kind of pain can’t be attributed to 'unfavorable conditions' and absolutely requires medical intervention. I’ve found that communicating with my medical provider and/or seeking emergency medical care is critical when I’m experiencing new or worsening symptoms. I’ve learned the hard way that overthinking the cause of my pain and subsequently delaying treatment can cause irreversible damage. When in doubt, get it checked out."

Emotional pain

"Throughout being misdiagnosed with MS, I never once acknowledged the truckloads of emotional pain that I was accumulating. I felt heartbroken on the inside but didn’t have the awareness to know that what I was feeling was grief. I prioritized physical pain over everything else, and if I felt the slightest bit of sadness, I was quick to remind myself that I should be grateful, and things could be worse. 10 years later, after permanent blindness and receiving an NMOSD diagnosis, I realized that I could no longer ignore or avoid the emotions that had been bubbling at the surface. With the help of a licensed therapist, I began talking about the sadness and anger I had kept bottled up for so long. At first, talking about my emotions was more brutal than beautiful. My therapist regularly reminded me to trust the process, but at times the process seemed impossible to trust, especially when it felt like torture. Looking back, I’m grateful for enduring hours of brutal therapy sessions because, without them, I wouldn’t have the strength to look forward. Now that I know better, I try to do better. I no longer prioritize my physical pain over my emotional pain. Both are valid, both are real, and both deserve my attention."

Dan Marino

"Coping with the pain of NMO can be very different for each person living with it. For me, the pain comes from dealing with the obstacles that NMO has given me. For example, focusing is something I struggle with daily. Reading is my biggest issue and can cause the most stress and pain, leading to headaches. I feel like there’s only so much I can read at a time without making me want to just lay down and sleep it off. Of course thanks to technology, I can make fonts bigger and bolder on my phone and that’s been a huge help. It can be embarrassing at times when a phone is right in front of your face, but it’s how it has to be sometimes."

"Now when I’m out and about and end up in a huge crowd, that brings a whole different pain: the pain of trying to not walk into anyone. There are so many faces that my eyes try to but can barely make out. Then our good pal anxiety enters to give me a hell of a time. It can be overwhelming and really make me just want to hide."

"Double vision is also another pain I have to deal with. Glasses or contacts don’t help with this and it happens quite a bit. Each eye is so different and, when trying to focus, I usually get double vision. With this comes the pain of dizziness which isn’t fun at all. The worst of it also happens when I try to watch tv or movies. Most of the time I have to just listen and occasionally look up at the screen. This pain is something I’ve learned tricks to cope with such as angling my head and looking certain ways at the screen."

"Flare-ups or attacks are the real physical pain that I get. It feels like my head is being smashed in and my eyes are going to pop out. That’s how bad the swelling in the optic nerve can feel. It takes a lot of drugs to make that pain go away. It’s a slow process at first and before the twenty-four-hour mark it can be unbearable for a few days."

"Pain can be many things to people. A lot of NMO Warriors have real pain that can be overwhelming. Pain can come in all shapes and sizes."

Mo Jones

"Unfortunately, pain is something I dealt with long before I ever knew NMO existed. If I have had NMO as long as I suspect that I have had it, it is probably the source of all the pain that I have had. I have learned my triggers when it comes to pain. My biggest pain trigger is stress. I think that most other warriors can relate. I try to keep my stress to a minimum because I know that the minute that I start to stress, my body will go into shut down mode. As with most things, I feel that stress is the root of all evil."

"Extreme temperatures cause me pain. I try to keep the temperature wherever I am at a moderate level. If it is extremely hot or extremely cold, the pain eventually sets in. The weather where I live is forever changing and we can have all four seasons in the span of a week, so it is kind of hard to control the temperature-related pain, but I do the best that I can."

"When I try to do more than what I normally do, that triggers pain. As a mom, it is hard to not want to go above and beyond for my kids, and sometimes I push myself, even though I know I am pushing myself over my limits. I try to make up for what I can’t do, by overdoing what I can. It may not be the wisest decision, but to me, it feels right."

"Now that I have told you what triggers my pain, here is how I deal with it: hot baths or showers. Although extreme temperatures normally cause me pain, there is something about the hot water that relaxes my muscles. I also have a lotion that contains menthol that has been a big help, and I will rub that on after my shower or bath."

"Unfortunately, when it comes to pain, most doctors haven’t figured out how to accurately manage it. They throw painkillers at us, and like most things over time, they stop working. Painkillers are now used to take the edge off. If I have them available, I will take them when I first feel the twinges of pain to try and stop it from being bad. To be completely honest, I’m not really sure if there is anything that can be prescribed that will really alleviate the pain that we have. I choose to indulge in some of the more “non-traditional” measures such as CBD and the like, and that helps me, but what works for one, doesn’t work for all. Trying to stay ahead of the pain, and knowing what causes it for me are the biggest ways to manage it."

Aldelly Vasquez

"Coping with pain can sometimes be very difficult. When pain is visible people tend to sympathize more with you, but when pain is invisible people question your sanity. It's unjust, but it's true. Personally, dealing with nerve pain for me has been hard for many reasons, one of them being that it is not visible."

"A few weeks back I was getting a burning sensation on my thighs. It was a combination of a 4th of July night full of fireworks and a nonstop stingy burning feeling under my skin. It was so painful and hard to deal with. I usually don’t get these sensations on a normal day, but then again, what is normal in the life of NMO? When I do get this unseen painful sensation, almost no one understands me, except my neurologist. He usually recommends nerve pain medications to help calm the pain, which work, but I go the extra mile."

"I’ve learned to use essential oils to help me with pain. There are so many different essential oils and so many uses for them. I suggest you learn from a certified essential oil person before trying anything. My favorite is a combination of vanilla extract and lavender. It smells so good and the result my body gets from them is beneficial. I also try to hydrate with at least 2 liters of water per day. It helps me flush out any toxins I may have sitting in my body. I’ve also tried CBD oils, but I don’t find that it did much for me. For my body, I’ve learned that I only get major crippling pain when something is brewing in me like a cold, infection, etc. I don’t get nerve pain daily."

"Now if we're talking about spasms and that pain well my friends, for me that’s a different story. One of my biggest symptoms when it comes to NMO is spasticity. Living with spasticity is like constantly living with a charly horse that won’t go away. Spasms slowly took over my body due to nerve damage. My spasms were mainly in my lower limbs, and they made it so difficult for me to walk, stand and sit. It is horrible! My spasms was treated with different pill medications, but it wasn’t enough. Plus, I was very sensitive to the side effects and always ended up with GI issues. Then I tried Botox directly into the affected muscles. It works for about two years, and it help alleviate the spasm temporarily, but they would always come back. Finally, it was suggested that I try something called the baclofen pump. It's an electronic pump installed in my body that would provide relief 24 hours a day by pumping medicine into my body. While I’ve only had it for a year and while I’m still adjusting to life with a pump, I can say it has helped me so far. I still have a long way to go so I can be spasm free but at least I have an open mind to keep trying and pushing."

What has your experience been when it comes to coping with NMO-related pain? Share with us in the comments.

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