Pins and Needles

It was 3 months after I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD). I was 95 percent paralyzed from the waist down since October 2021. But thanks to regular exercise, physiotherapy and steroids, my sensation was slowly and gradually coming back. I was able to take a few steps with the help of assistive devices.

It was during one of my physiotherapy sessions in February 2022 that I screamed, because I felt as if someone had poured boiling water or acid on my feet. My ankle twisted. The feeling stayed for a couple of seconds and the pain went all the way up to my waist.

Waves and spasms

What just happened? I asked my therapist. He told me to consider it good news, because my muscles were waking up, and that’s why I felt that wave. I was also told that soon I would be walking without assistive devices. I was elated, thus ignoring the wave and spasms.

A couple of days went by like this. The intervals of spasms were getting shorter, and sensations like jolts were getting stronger. And the pain was a lot worse. My toes would twist unimaginably. When things got out of control I was taken to the ER, and for 3 days I was given a dosage of Baclofen in my spine.

Post-ER visit, the spasms and pain would momentarily subside. But they never fully went away. Since this was the same time I was getting Rituximab infusions, the doctor said it all might be a side effect I was experiencing.

Pricking sensations

In the midst of all this, a new layer was added to this whole “muscle awakening” thing. Ant bites. I need to mention, because of the damage from transverse myelitis of my spine, I can’t feel the floor (even after I started getting my sensation back). The soles of my feet feel like I have little pebbles tied to them 24/7. Then I started to feel a sensation similar to ant bites. It would start around my lower waist, and it could go any direction on my body from there.

The first time I experienced this, I actually went looking for the ants on my feet. Initially, these sensations were happening only under my toes and soles. The pricking sensations became worse as my leg got better. There was no slowing it down.

To make matters worse, it started to progress further in my whole body. The "ant bites", or pins and needles, will appear anywhere in my body. Sometimes I’ll freak out because I feel like an insect is crawling on my body. Mostly on my forehead, neck, or back of my thigh. Other times, long hours of sitting or lying in one position can make it worse. The sensation makes it difficult for me to sit, stand or walk. During that time, if I tried walking I would trip. If the sensation were in my hand, I would end up dropping what I was holding.

Nothing was working

I would have emotional outbursts caused by frustration because I would not be able to explain. Because it was so sudden. I also noticed a day my chronic fatigue was at its peak, so were the pins and needles, and numbness.

There were heat waves, there were cold waves. There was numbness and there were jerky movements. There was pain, spasms, and touch sensitivity. All of it with pins and needles. Baclofen wasn’t working. Nothing was working or slowing it down.

Paresthesia

My neurologist told me I had a condition called paresthesia caused by nerve damage, due to transverse myelitis of the spine. And prolonged periods of rest or non-movement would trigger it. There is no cure for it, but I was advised to regularly exercise.

It's been a little over 2.5 years since I was diagnosed with NMOSD and transverse myelitis. It's been a year since I have been free from those painful spasms. I can walk without an assistive device, yet paresthesia is still there.

Things that have worked for me for my paresthesia include:

• Regular exercise – to keep blood flow going
• Avoid hot places and keep body temperature low
• Avoid sitting in one position for long hours
• Move around whenever I can (despite chronic fatigue)
• Cold compression (at times of heat waves flare-up)
• Hydration
• Pressure socks and gloves
• Wrist and figure exercises; a stress ball works for me
• Toe exercises
• Breathing exercises (especially when paresthesia triggers anxiety and panic attacks)
• Staying up-to-date with my MRIs

Staying alert

Pins and needles, or paresthesia as I came to know it, is a condition that sometimes comes with age or with another medical condition. My neurologist told me there is no cure for it, and I need to be alert and look out for anything unusual like slurred movement or speech (which might indicate stroke).

It can be daunting, but we don’t have to get scared - we just need to work our way around it.