Some pain is obvious. When someone breaks a leg, the leg is put in a cast and the person is given crutches. When you look at a person hobbling around on crutches you feel immediate compassion because you can see the pain and discomfort the person is experiencing.
This is not the case with chronic illnesses like Multiple Sclerosis. Pain associated with chronic illness is invisible. There is no cast or crutch that can protect demyelinating nerves. Compassion for this kind of pain is tougher because there are no visual cues to relate too. This makes describing nerve pain to someone who has not experienced it next to impossible.
In the summer of 2010, I started experiencing excruciating pain that I could not communicate with my wife or anyone around me. It would happen suddenly in the middle of a stride when I was walking and feel like a lightning bolt striking through my body. The severity of the pain was shocking and would leave me temporarily frozen in my steps.
In addition to the pain, I was experiencing numbness and weakness in my hands. I couldn’t grip a cup or unlock a door with a key. My fine motor skills were deteriorating rapidly. The numbness and weakness happened more frequently than the full body shock.
Prior to this episode, my neurologist had already been tracking a structural problem with my neck from when I diagnosed with Transverse Myelitis (TM) in May of 2005. The swelling of my spinal cord which resulted from the TM had caused my discs and vertebrae to become out of alignment. I was prescribed Lyrica to manage the nerve pain. I also started physical therapy, including traction and electronic stimulation (E-Stim), to relieve the pain. For a while, this routine was working for me. That is until I started experiencing the full body shock.
Now, my MRIs revealed that I was experiencing severe Spinal Stenosis. Spinal Stenosis is the flattening of the spine. This was cause by a piece of my C6 vertebrae that had fractured and was severing my spine with every step. The electric shock I was experiencing was diagnosed as Lhermitte’s Sign. Lhermitte’s Sign is common with spinal cord injuries and can flare up when your neck is moved the wrong way.
Although I had no visual cues like a cast and crutches, my wife noticed that I was hunched forward a little. It was like I was holding myself in a defensive stance. I also couldn’t turn my head and neck to look to either side. Rather, I would have to twist my whole body, keeping my head and neck straight. I was also having problems getting dressed and tying my shoes because I was afraid to bend my neck. Picking up my boys who were toddlers at the time was out of the question.
My neurologist gave me the news that I didn’t want to hear. I had only two options: neck surgery or risk becoming a quadriplegic. Although I was scared to death of neck surgery, I knew that my only option.
In September of 2010, I underwent a successful anterior cervical fusion. I was fused from C6 to C7 and now have a titanium plate in my neck. Since having the surgery, I no longer suffer from Lhermitte’s Sign and the numbness and weakness in my fingers is gone.
While surgery repaired my spinal injury, the key to my recovery has been body awareness. When I start to feel my neck stiffen up, I practice the stretching routine given to me by my PT (click here for neck and back pain stretches). I am also trying to make lifestyle changes like using a neck pillow on the airplane when I travel so I don’t fall asleep wrong position and using a roller briefcase instead of carrying my laptop bag on my shoulder. I also try not to overdo it when I carry groceries or pick up my boys.
By stretching, strengthening and being more aware of my body limitations, I have been able to reduce the pain in my neck. Today the only visual cue of my nerve pain is the scar on my throat from the surgery. My scar has become a reminder that no matter how bad the pain and how many times MS knocks me down, I will get up and keep fighting.