Living with NMOSD Spasms
Last updated: April 2023
As if living with NMOSD isn't challenging enough, there is always that one thing that's worthy of a full conversation. You know that one thing that's so bothersome that you just can't stop talking about? For me, that's the spasms. From what I gathered, I'm not alone.
Painful tonic spasms are a common symptom in NMO. A tonic spasm is a continuous involuntary muscular contraction.1 When associated with myelitis, it is relatively specific to patients with NMO and is most commonly observed during recovery from the first myelitis episode. Patients with NMO presenting with myelitis at disease onset appear to be at higher risk for developing PTS compared with other patients with NMO.2 Of course, one patient living with NMOSD may experience spasms differently than another patient. Treating spasms case by case will result in the best outcome for relief.
My personal experience with the spasms
Oh, the dreaded spasms. Yikes! I can tell you from experience that these can consume your life. I find myself confined to my house like a hermit crab in a shell simply because of the fear of an exorcist-type-movement in public. Can you imagine it? I can’t help but to worry about being stared at by people wondering what's wrong with me when I'm having these spasms. I'm talking about the jerking and shaking and odd movements that tend to startle people when I’m simply just sitting trying to be "invisible." I hate the feeling of embarrassment and I can’t help but to feel compelled to explain myself when it happens. I’d rather just avoid it all. For this reason, I stay away from the public eye as much as I can. At least until I can get them under control.
Baclofen pump to the rescue
I have had some luck with keeping the spasms under control with the assistance of a Baclofen pump in the past. It has worked WONDERS for me! Prior to the installation of the pump, I was unable to even walk at all due to the rigidness of my tone due to spasticity. However, after the pump, after a while, I began to feel relief.
Ebb and flow
Unfortunately, with NMOSD, there is also a lot of pain that comes with living with the illness. It was determined that I would get morphine put into my pump due to this. More unfortunately, this caused an adverse effect for me and now, the medication is being removed. As we decrease the medication, the spasms have increased. It's an unfortunate give and take. As it stands now, the spasms are back in full effect and my life sucks, at least for the time being.
5 tips and tricks for spasm management
I have been battling these spasms for more than 2 years now. There are more than a few things I have learned on this journey:
- Tonic spasms need to be recognized more than they are in NMOSD patients and treated accordingly.
- Spasms are painful. When you can control the spasms, you can control the pain.
- Physical Therapy can only help so much. Most often, some form of medication is needed to control the spasms.
- Tonic spasms, spasms, and spasticity affect mobility and can be DEBILITATING.
- Quality of life is affected by decreased mobility due to spasms leading to increased mental health issues.
I won't let the spasms get the best of me!
Overall, they always say what doesn’t kill you makes you stronger. Well, that doesn’t mean it makes it easy. NMOSD and the spasms that come along with living with the disease are difficult. Likely one of the hardest things along with the pain you will find yourself having to deal with however, your illness does NOT define you, and you CAN manage it. Remember, you are more than your NMOSD, including those pesky spasms!
Does anyone else experience spasms? How do you cope with them? Tell us in the comments!
Typically, how much time passes between attacks for you?