The MS Voodoo Doll

Before I transfered to my current neurologist, at UTSW, I saw a young neurologist who worked in the same office as my primary care doctor at the time. He wasn't an MS Specialist...just a run-of-the-mill neurologist. When I first walked into the exam room at his office, his nurse told me that "MS is not a disease of pain." I remember thinking that was an odd thing to say, since I knew, even at that early stage of the diagnostic process, that a malfunctioning nervous system could absolutely cause varying degrees of discomfort and/or pain. I didn't argue with her at the time, because I was still in shock at having to see a neurologist at all.

At the time of that appointment, I told the doc that I had been having some weird, electric-like shocks in my face. He didn't seem concerned. Over the next couple of weeks, those shocks turned into a sensation that felt like the skin on my face was being burned off, from the inside. It was made worse by hot showers, chewing, laughing and talking. Once, when I was outside, some cold rain hit my face and it felt like teeny tiny fireballs, instead of rain drops. The doc diagnosed it as Trigeminal Neuralgia, a form of chronic nerve pain that affects the trigeminal nerve, which carries sensation from your face to your brain. He put me on Gabapentin, an anticonvulsant medication that also works to relieve nerve pain. My gastritis flared up like crazy after a few weeks of this medication, and I had almost constant "brain-zaps," a term used to describe the sensation of electricity briefly passing through the brain. So, the doc prescribed Trileptal, another medication, similar to Gabapentin, that actually did help the pain for a while. Unfortunately, I developed an all-over body rash from the Trileptal, so I had to stop taking it. I've talked to my current neurologist's office, and we're going to see if I can manage the pain using OTC meds for now. They were going to prescribe Lyrica, but it is very similar to Gabapentin, and I really don't want those side effects right now. It's also more expensive than the other meds, because there isn't a generic version. They have a coupon for it, but I'm just not up for all the work it would take to find a pharmacy that takes the coupon, then go through the whole process of my body trying to adjust to the med, etc.

And, honestly, sometimes you just want a break. I feel like my body needs time to adjust to the Gilenya, and I just got back on my regular antidepressant/anti-anxiety med, Celexa. The doc had changed that one because it had the potential to cause issues with my first dose of Gilenya. I just don't want to add yet another medication change into the mix right now.

The nerve pain isn't just confined to my face, though. I have pain down the back of my legs, similar to the pain you'd feel from a bulging disc in your back, when it compresses a nerve. I have pain in my feet and hands that feels like someone is stabbing me with hypodermic needles. It isn't constant, but it is painful and annoying. Sometimes, the pain in my hands will get really bad, like it did yesterday and last night. It's not a joint pain, or even a muscle pain. The only thing I can relate it to is this: Imagine the pain you get in your head, when you have a really bad headache - now take that type of pain, and put it throughout your hands. It's pretty damn painful. It literally feels like someone has a voodoo doll of me, and they're just sticking these needles into all different parts of my body, over and over again.

And despite being on a DMD (Disease Modifying Drug) there is no cure for this type of pain. My nerves are just misfiring...and so my body hurts.

But I'm not alone, and my case is actually pretty mild compared to some of my MS friends who have daily, almost continual nerve pain. And because nerve pain is so hard to explain, we often feel like our friends and family don't fully grasp the extent to which we're hurting. Honestly, how could they? It's one thing to see someone with a broken arm and understand that they're going to be in pain for a while. But how do you comprehend burning pain in someone's face? Or the discomfort of pins-and-needles pain in your extremities? It's tough...invisible illnesses are TOUGH.

In summary, I'll leave you with a description of the Three Levels of Pain: 

1. Regular Pain

2. Excruciating Pain

3. Stepping on a Lego

Happy Saturday, ya'll!