Hope & Healing from Chronic Pain

If you are in the midst of the darkness, in pain and despair… I want you to know there is hope.

To write those words, utterly delights me! I prayed with all my might for many, many years for a miracle, and I just may have been delivered one. After a decade of unrelenting pain, embarrassing muscle spasms and stiffness, I feel – well, a bit better!

A couple of months back, I commented at the dinner table that I didn’t feel quite as bad. I was almost hesitant to say anything; however, I’m a big believer in the power of positivity. So, in the spirit of honoring even the smallest of victories, I told my family that the pain just seemed slightly less intense. When I’d stand from a seated position, my muscle spasms weren’t quite as intense. Even our girls were fascinated as I hadn’t said anything like that in a long, long time. Just months earlier, I felt like life was slipping away. I was so wrecked by pain and suffering that I literally didn’t think I’d live to see our girls’ next birthdays. I was secretly (or maybe not so secretly) grieving the loss of movement, energy, potential, presence, self.

Weeks passed and the pain lessened. I felt new mobility in my arms and legs. They just weren’t as stiff and shaky as usual. I found myself at the table with my family once again noting that I felt a little better. I was able to participate more fully in home and work activities. My energy was higher. I could better endure and when I fell apart each day, it just wasn’t nearly as bad as it had been.

What changed? Honestly, I’m not sure. I successfully weaned myself off of the diazepam that I had been prescribed for several years. That was a big win right there. A physician put me on baclofen instead, which is another muscle relaxer. I’m supposed to take it three times a day, but I only take it once at night as it makes me drowsy. Still, was a simple medication change the reason for this improvement in my health? I did start to incorporate a low-dose CBD into my routine. I also got sick with COVID again in May. Perhaps, the virus tackled whatever it is in my body that was making me so sick… and weakened it?

In June, I had an appointment that had long ago been scheduled with a new neurologist. My primary care doctor insisted. This doctor was attentive. His exam was thorough and at the end of our appointment, he said he needed to do some research – that my case couldn’t be diagnosed in a clinical visit. This was a Thursday. On Monday he called and said that he’d been working through the weekend on my case and that he’d been thinking of me. Compassionate. Kind. I was grateful for that. He diagnosed me with primary lateral sclerosis. Surprisingly, this was one neurological condition I hadn’t heard of before. It’s an motor neuron disease. Yes, a relative of ALS but not nearly as severe.

Strangely, I didn’t have much of a reaction to that diagnosis. Despite clinging to the prospect of a proper diagnosis for the better part of a decade, I didn’t hear his words and wash away in despair nor did I feel relief in getting a new diagnosis. I felt rather ambivalent about it.

I do have an appointment in August with another neurologist that my providers want me to see. This doctor has an 18-month wait. Ugh. I was supposed to make an appointment years ago but when I was told of that wait time, I decided nope – not for me. When my immunology team found out, they pressed me to make the appointment. This new neurologist instructed me to keep that appointment for another opinion and to see him again in six months.

As I write this, life feels almost magical. It sparkles. Is the pain gone? No, not by a long shot… but it’s manageable. There are days when I can leave the scooter behind. I’ve been able to participate. I don’t know what tomorrow will bring but I sure as heck am going to enjoy what feels a bit like remission. I am so incredibly grateful for this reprieve. I hope it lasts. I hope.