The Nerve of Me and Other Stuff

One of the many unwanted gifts of the stroke is neuropathy. It is nerve pain that affects my left foot and left shoulder. When neuropathy pain attacks I feel like I am being stabbed with a million hot needles The neuropathy is worse on my foot.

It gets so bad at times that the nerves cause my foot to spasm. My toes curl in, my foot lifts and I am not able to take a step. Through the years, this condition has improved a bit.

This Boot was Made For Walking

Recently, I went through a procedure called serial casting. It was done to help improve my gait. For five weeks, I had to wear a walking cast meant to stretch my Achilles tendon or heel cord.  i

I had the casting one in October, I had to dress it up.

Walking on Fire

The serial casting was deemed a success. I was given a carbon fiber ankle-foot orthosis (it sounded so high techy to me) or an AFO which is a brace to continue to help me with walking.

Although I have noticed an improvement in my walk, an unfortunate and unexpected side effect occurred. The nerve pain on my foot intensified. It was neuropathy on steroids.

My first test run with the AFO was at the mall in the height of Christmas shopping season. It started out nice, I was by myself and was free to look around without anyone bugging me to hurry up. Unfortunately, after about 20 minutes I got a searing, shooting pain from my foot to my leg. I was able to push through for a few minutes, but the pain kept getting worse. It was so bad, I held back tears as I walked out of the mall.

The next day, I had on the brace when I got on the treadmill. I wasn’t on for more than 10 minutes when the searing, burning pain started up. I had to remove my brace to continue to workout. But even then I was struggling with spasms.

Throughout the months of December, January and February, I was in agony. Walking was excruciatingly painful. I finished the 408k in February by the skin of my teeth and the help of a few good people.

I was hardly finishing workouts due to pain. I didn’t even leave the house all that much. When I did go outside, I would break out in sweat and grimace in pain when I took a step. Thank goodness no one noticed.

The Long Road to Relief

I emailed my PT about the pain. During our January appointment, she determined I had plantar fasciitis caused by the brace. Her advice was no walking, wear a night splint and to ice my foot. I had the 408k race three weeks after that appointment. I tried wearing the night splint, but it only exacerbated the pain. Icing my foot every night didn’t see, to really help.

When I told my pain management doctor about my pain issue and he suggested a nerve conductivity test or an EMG. After a fun time of getting shocked and poked (sarcasm font really needs to be a thing), the test yielded nothing. The next step was an MRI and a referral to a neurologist.

The MRI was to rule out any discs pinching nerves on my back. There were no pinched nerves, but they did find gallstones!! (I am seriously a hot mess). No worries though, they are too small to cause problem. I just have to eat healthily and drink plenty of fluids (cran-vodka is a fluid amirite?).

Moving on to the neurologist. Dr. tells me he will perform a “highly sophisticated and high tech” test on my feet. I was rather embarrassed when I took off my shoes since I haven’t had a pedicure in a while. Since was too painful to have anyone touch my foot, my toes were quite scary. As he gloved up, he again tells me that the tools he will be using are sophisticated but accurate. His face was serious. He then takes out a safety pin. Wha???? He proceeded to poke both of my feet with the pin. Noting that I cringed every time he touched my left foot. I cringed the same way when he touched my left foot with a cotton swab. I told him about the serial casting. He repeated the tests a couple more times, using his “high tech and sophisticated tools” having the same results each time.

He determined that as a result of the casting and my foot being placed in an awkward position for five weeks, my nerves had been damaged. Healing will take weeks if not months.

I was also referred to a pharmacy specialist. She went through the list of my current medications so that she and my doctor could prescribe the proper medication. It was recommended that I take an anti-seizure medicine. I read about the medication and was not keen on the side effects which included brain fog (I already have that), sleepiness and weight loss (that one isn’t too bad ). Besides, I really did not want to add any more pills to my already long list of medications.

Giving in, not giving up

After some serious consideration and really bad days, I gave in and am trying the anti-seizure meds. I cannot soldier my way out of this. How am I able to go to the gym when just walking is too painful. I cannot even stand in the shower as my foot would spasm as soon as I step on the tile. The pain I was experiencing was giving me a lower quality of life. Who knew that the procedure that was supposed to help me walk better would be the thing that would stop me on my tracks.

Rant alert

I placed a wheelchair request with my doctor. Walking has become has become so painful. He approved my request with this caveat:

“If you do get the wheelchair, I would not recommend using it very often, only occasionally when you have to walk very long distances. Walking is better to keep your muscles and bones as strong as possible.”

Really? Really? This guy has been my doctor for the past three years. I’ve talked to him about my frustrations of not being able to run. I see him every three months. I am insulted that he would even insinuate that I am being lazy. Does he not take notes? Has he not heard a word I’ve told him all these years? I am not trying to get out of walking. The last time we met face to face, I told him that I had just walked the 408k race. I had walked 5 miles! It is infuriating that he has not made an effort to get to know me as a person. An added frustration is that I cannot easily switch doctors. He is the only one under my insurance provider that is trained in both administering Botox treatments for my spasticity and adjusting and refilling my Baclofen pump. Rant Over.

Small Victory

I have been on the anti-seizure meds for a week and a half. Going to the gym pain free was delightful. The pharmacist warned me that there might still be breakthrough pain which has happened. But they are not as crippling like they were before! So far, I haven’t felt any of the side effects including weight loss 😝.

iMy first pain free workout in three months!

I am ecstatic that I’ve had two pain free work out days! My nerves are finally settling down. My PT still would like me to not wear my brace just yet. To make sure everything is completely healed up.

It was discouraging that the serial casting didn’t turn out the way it was expected. The damage it seems is fixable. This time around, I didn’t have to push too hard to get the help I needed. I guess, by now they know I don’t give up easily. Ha!

Much Love, Momma Berna