Spasticity: The Pain is Real

Spasticity is common in about 80% of the people who have multiple sclerosis. In this culture, the term spastic or spasticity carries a heavy semantic burden. It implies a less than other’s mindset when in fact it comes from an inability to control one’s muscles. MS spasticity results  from the demyelination along the nerves of the brain and spinal cord that control movement.  Although mild spasticity is not painful, severe spasticity is very painful and debilitating.

 Initially, my symptoms with the disease include the MS hug, numbness, tingling, fatigue, nausea, and cog fog although my fingers would get locked up and be painfully contorted on occasion.  

I would tell my doctors that I had no real pain, no pain 0 – 10.  That was until a Sunday afternoon when the muscle spasms hit instantly and relentlessly.  Tylenol and the heating pad did not curb the pain. I could not walk on my own.  Every movement brought pain and muscle spasms, not like leg cramps, but rather cutting sharp, can’t inhale pain. I thought maybe I had a kidney infection.  After a quick discussion with the nurse on duty, I went to the ER.

After a lidocaine patch, saline drip, and muscle relaxant and a CT scan, no kidney  infection, no UTI, just my old friend MS.  What did I learn from this experience? When I begin to experience more pronounced Lhermitte’s Signs, I must rest, rest, and rest. Do nothing. Chill out.   Stop moving before the spasm take over because the nervous system is overloaded. Yes, the nerve signals get upset and the reaction is for the muscles to spasm.

Lhermitte’s sign, or Lhermitte’s phenomenon,   describes an electric shock-like sensation that occurs  when a person with MS looks down or moves the neck by flexing it. This shock sensation moves down the spine, often into the legs, arms, and sometimes to the trunk. It is an obvious sensation that people with MS experience.

Tracking the bouts of spasticity is important.  There is a helpful form used by the MSAA that can be used and kept for the tracking of spasms.

The coach in my clinical trial also told me to increase my stretching and yoga to help avoid new onsets of spasticity. Truly, health care providers need to discuss handling spasticity since it is common and painful.