The Dreaded NMO Pain

By Shekita Green

3 min read

I was first diagnosed with NMO in February 2020. It took 7 years for me to get to this point after being misdiagnosed in 2013. During that time, I was pretty much non-symptomatic and was only dealing with vertigo and nystagmus (involuntary eye movement) symptoms. After the last attack that lead to my diagnosis, I was completely shook by the unexpected, unexplained pain that was to follow and never go away.

My first experiences with NMO pain

Just days before I was told by my neurologist that I had this mysterious illness called NMO, I ended up back in the hospital for unbearable nerve pain in my face. It initially started with an odd feeling on the top of my head that felt like something was pressing into my scalp. This quickly spread down my face to this burning, intense stabbing pain. The pain was so bad that I found myself immediately breaking down in tears anytime this "attack" would happen. I didn't understand what was going on. I couldn't see, so looking up symptoms was out of the question, and I heavily relied on my doctors for answers. In the midst of this, I went to the ER. Hopefully, I would find a solution. I prayed for relief.

The start of the inevitable

While I was in the ER, I was given morphine for pain. This did not work. It only relaxed me and yet I could still fix my NMO pain. Then they tried, "something stronger than morphine", which also had the same effect. I thought "what is going on here, what kind of problem do I have that doctors cannot fix?". I could tell this was not something they were prepared to deal with and were not going to. They sent me home with Tylenol with codeine and told me to see my neurologist. That was the point I knew what I was in for. I knew I had to find a way to be stronger than my illness before it would overcome me.

The aftermath

The intense nerve attacks began at the top of my head and moved down my face into my upper body. This pain lasted for almost 5 months before it began to subside. All the while, there was a feeling of numbness and tingling in my fingers and legs. I also did not seem to have much feeling in my trunk area which lead to the malfunction of my bladder and bowels. There was no relief provided to me by my doctors. 8 months after my attack I started experiencing muscle spasms which progressed into uncontrollable movements by 10 months. I was finally referred to a pain management doctor who was able to provide me with more relief and treatment options than any other doctors that I've encountered. Finally! A light at the end of the tunnel!

The evolving solution

As of now, I have taken a series of medications to try to treat the pain and muscle spasms, however, I have gone through surgery and had an Intrathecal Baclofen Pump installed in June 2021. Baclofen is a muscle relaxer medicine commonly used to decrease spasticity related to multiple sclerosis, spinal cord injuries, or other neurological diseases. An intrathecal delivery system, which provides the baclofen right to the target site in the spinal cord, is an effective way to deliver the medicine. Along with the pump, my doctors have tried to add Prialt, which is a pain medicine that helps with nerve pain to the pump. Unfortunately, the side effects associated with this have been too drastic for me to continue its use and have landed me in the ER twice. Now, I am taking Valium along with the Baclofen. The unfortunate truth is that I am still in immense pain.¹

The truth of NMO pain

According to a study published by the National Institutes of health, words like "terrible, agonizing, wretched, sickening, and unbearable are frequently used by patients with neuromyelitis optica" to describe the pain they experience. The study continues, "More than 80% of patients with NMO experience pain from this condition, which severely affects their quality of life. At present, there is no known therapy that produces satisfactory relief from NMO-associated pain. In fact, contemporary pain therapy is largely ineffective in these patients, suggesting that the mechanisms underlying NMO pain differ substantially from those of other treatable causes of pain." So what can we as sufferers do for NMO pain? I have learned to live with it. The best that I can while working with my doctors to try different solutions to manage the symptoms.²

What solutions have you found that work for your pain?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Neuromyelitis-Optica.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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DarlinDD Member
Goodness, try the soliris infusions please! My involuntary, horrific convulsions stopped after the second infusion along with lamotrigine, 25mg. Gabapentin and baclofen did nothing for me. The soliris does have its downside but look into it. At first I was hesitant to do the infusion but the pain changed my mind fast! I'm going in for my third infusion soon and feel good for a change. Before I was feeling like a crippled old woman pushing a walker who could have convulsions in public at any time, hence the Walker. More than a few times I did have convulsions at the hospital but I put the brakes on and sat before I fell. Once the nurse yelled for help as she thought it was that bad. Let me tell you it wasn't half as bad as they were at night! My granddaughter came into my room one morning and asked why everything was on the floor. The convulsions had been so bad I'd unintentionally kicked things off my nightstand and the bench at the end of my bed. It was just so awful going through that so although I'll have to take soliris the rest of my life every two weeks it's better than the spasms and the horrendously painful convulsions. I felt that I couldn't live with the pain and that a bottle of sleeping pills and hard liquor would be the only solution. But I held out hoping that starting infusions and new meds would work. Had it not been for my grandchildren and God I wouldn't have been able to hold out. You seem stronger than me! I do hope you look into getting the infusions and if you don't mind I'll pray for you. 
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GoodHealth24 Member
It’s good to be a part of this community of people that have NMO and who I can relate to. Because this is a rare disease not many drs know about it. I was talking to my dr that diagnosed me and I was telling him about the amount of pain and numbness that I feel. He says that NMO doesn’t cause pain. Meanwhile it’s excruciating pain associated with this. It’s so frustrating that even the Drs don’t understand how I really feel.
kailahholmes Community Admin
<inline-mention username="GoodHealth24" user-id="6678067"/> we're so happy that you've found connection in this NMO community. It must be extremely frustrating to not feel heard and we want you to know that we are here for you throughout your journey! Wishing you all the best, Warmly, Kailah (NMO Team Member)