Chronic Pain: The Elephant in the Room

Lelainia Lloyd avatar

by Lelainia Lloyd |

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One of the most difficult aspects for me of living with neuromyelitis optica (NMO) is dealing with chronic pain. It’s what most affects my quality of life, but in my opinion, it’s also the least addressed and treated issue.

In 2012, when I was newly diagnosed with NMO, I had the opportunity to listen to a well-known physiatrist speak about NMO and pain. He explained that by damaging nerves, NMO causes them to be hypersensitive to pain. Once that happens, dampening down the pain becomes incredibly difficult.

I have struggled with chronic pain for 35 years. It began with neuropathic pain when I was 15, and grew to include skull-crushing migraines, and later, joint pain from two types of arthritis. Recently, it’s also included bone pain from insufficiency fractures due to severe osteoporosis, a result of long-term steroid treatment.

Chronic pain has affected my ability to get a good night’s sleep. I wake up in pain several times at night, which often is so bad I am unable to get out of bed to get my pain medication. I’ve learned to keep a bottle of water and my medication on my bedside table for easy access. 

Not getting a good night’s rest compounds the daily fatigue I experience, making it difficult to keep up with all of the activities of daily life. I have a finite amount of energy on any given day to get things done, and being in constant pain saps my energy even faster.

Things have gotten to the point that I now have a housekeeper to help with more physical jobs like laundry, vacuuming, mopping, and recycling. Although I was initially reluctant to have a stranger come into my home, especially during a pandemic, I can’t tell you what a relief it’s been to have help. In two hours, she accomplishes what it would take me an entire week to do.

Chronic pain also affects my ability to socialize. When I’m feeling bad, I have to cancel plans I’ve made. If I keep those plans, it’s a grind to get through them, and I pay for it for days afterward.

This is especially hard when it comes to spending time with friends and family, because I work so hard to act like I’m enjoying myself, when in reality, all I want to do is crawl back in bed. As time goes on, it becomes harder and harder to power through things. That makes me sad and angry, because I feel like this disease is cheating me, and in turn, it forces me to cheat my loved ones. It’s so hard when my mind is writing checks my body can’t cash. 

On some days, chronic pain affects my mood. For the most part, I am pretty even-keeled and positive, but I have moments when I am utterly miserable. I try really hard not to take it out on others, but sometimes I fail. I always apologize and hope that those in my circle understand it’s the pain talking, and it’s not personal. Mostly, I try to keep to myself when I’m having a bad pain day.

The most frustrating part of living with chronic pain is that like mental health, it’s the elephant in the room. My extensive team of specialists never asks how I’m coping with the pain or if there’s anything they can do to help. I find this incredibly frustrating. They know that pain is a part of living with NMO, yet no one talks about it. Ignoring it doesn’t make it go away, it just makes me feel more isolated and hopeless.

Accessing appropriate care for chronic pain has been impossible for me. I was referred to a pain clinic. It took two and a half years to get in. I went, hoping they could do something — anything — to help me. Instead, I spent over an hour at the appointment being gaslighted about the brokenness of my own body, and at the end of it, I was handed an address for a pain website and told to “see what other pain patients are doing nonmedically for pain.” They said I could come back in three months “if I felt like it.”

Needless to say, I did not return. The stress and trauma of that experience had me in tears for three days and completely eroded my trust.

My hope is that at some point, NMO researchers will explore NMO pain more deeply and find new ways to help those of us who are suffering. I have always felt that while it’s good to be looking for a cure, people also live with NMO. Chronic pain has a huge impact on our quality of life, and by and large, we are suffering — really suffering — in silence. 


Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.


Lisa Kovanda avatar

Lisa Kovanda

I cried reading this because it's like you read my mind. Pain has been the single most impact on my quality of life, meaning next to none. I am finally working with a pain specialist who is trying. Spinal cord stimulator trial? Absolutely. Possibly a morphine pump if it doesn't work. Yes, please. I will clear out my guest room if you need to come here. Halfway joking, but also not. Pain management has pushed me to the brink of suicide. It is definitely an elephant in the room, and it's a crushing weight. I had a doctor tell me no one dies from pain. I disagree. It causes horrible stress, and we know it causes a multitude of problems including increased risk of diabetes and heart attacks. Seriously, I understand why we're concerned about opioids, but no one, and I mean no one should ever have to endure this. And we're both mature WHITE women. Imagine being younger, Black, and male. I argued with doctors who didn't want to give anything to a young man in sickle cell anemia crisis, known to be excruciating because he might be abusing. Say what???

Lelainia Lloyd avatar

Lelainia Lloyd

I agree. Pain can cause people to lose hope and bring on mental health challenges like depression and Medical PTSD. It can deeply affect your overall health in so many ways. We need to start pushing for research in this area for NMO & MOG patients because it’s a problem that doesn’t just go away and only worsens with time. Thank you for speaking up and sharing your thoughts. 💚


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