“I Need You to Pinch Me” (Sensory Symptoms)

“I need you to pinch me. But I need you to pinch me hard”

The sun was already reaching through the blinds when I opened my eyes. It seemed like a normal day, it felt like a normal day. I lingered in bed for a few more moments, wishing I didn’t have to leave it’s comfort. Begrudgingly I got up and went to brush my teeth. Standing there at the bathroom sink, I quickly realized something wasn’t quite right. My right arm felt a little weird, and as I thought about it, so did my right leg. I touched my upper arm with my fingertips, then tried to pinch myself. Nothing. I touched my calf in the same way. Nothing. I gasped and ran into the bedroom to wake my husband.

My husband was barely awake, and couldn’t quite comprehend my crazy request. I don’t blame him, it’s not every day that I’m asking him to pinch me, and hard at that. But I didn’t quite comprehend what was going on either, just a few minutes ago everything was fine, everything was normal. I was laying in bed, comfortable and sleeping, and the world was the same as it was when I went to bed. But now, everything had changed.

This was the start of my first relapse, my entire right side had gone completely numb. I had never experienced sensory symptoms before and boy was I in for a surprise. I’ve read articles that say sensory symptoms are uncomfortable, but not debilitating. I call BS on that. Those articles are obviously written by people who have never experienced such sensations. Because the numbness and subsequent feelings that followed were quite debilitating, in my opinion.

Numbness and tingling are just two of the sensory symptoms that can accompany MS. Others include feelings of itchiness, burning, buzzing or vibrating. (Pain is also common with MS, and sensory in nature, but that will be addressed in another MSMonday article, I think it deserves it’s own). The technical term for these sensory symptoms, or altered sensations are parenthesias. These sensations can affect any part of the body, arms, legs, face, nothing is immune. These feelings, or lack there of, are a direct result of lesions on the brain or spinal cord that have interrupted nerve signal transmission between the brain and body. Sensory symptoms can be constant or intermittent. They can also very in intensity, appear at different times during the day or come in waves. No two sensory symptoms are alike.

Sensory symptoms can be quite debilitating and cause other issues as well. For example, if you have numbness in your hands you might have difficulty writing, holding things or being able to tell the temperature of a hot stove that you just put your hand on by accident. If your feet or legs are affected, you might have trouble walking or fall. Sensory symptoms that affect the genital region might lead to sexual dysfunction and cause difficulty within relationships (another MSMonday topic to be discussed later).

The “MS hug” is also a common sensory symptom and is attaining feeling around your chest or abdomen. This sensation can be just annoying or extremely painful. It is caused by the intercostal muscles between each rib going into spasm, these muscles hold your ribs together and expand and contract as you breathe and move. When these muscles are in spasm, just like any other muscle being in spasm, it is difficult to move them and often very painful. The MS hug can last from a few seconds, to a few hours, and for some people a few days.

What can be done about these sometimes annoying sometimes debilitating sensory symptoms? Often times sensory symptoms begin as a relapse, and IV steroids are often recommended and used to treat the symptoms. If symptoms persist after the course of steroids, there are several medications available for tingling and neuropathic pain, Neurontin (gabapentin) or Lyrica are two commonly used. After acute treatment, if needed, one of the best things  that can be done, cliché as it is, is to know your triggers to sensory symptoms. Pay close attention to your body and notice when they start. What were you doing when they began? What were you doing earlier in the day? I know for me, I can’t wear skinny pants for an extended period time, or else my legs will go crazy. Finding these specifics out, can be a lifesaver.

What are your symptoms and what are your triggers? Have you taken the time to find them out yet? Being aware of your body and it’s reactions are critical in making it through life with this disease. Head to my coaching page if you’re interested in learning more about how I can help you figure these, and other triggers out.

By that Saturday afternoon, that had started out as a lazy June day, I was in the hospital getting my first round of IV steroids. It was frightening, nerve-wracking and a million other emotions. But I was just beginning my sensory journey. I would soon experience extreme sensitivity, tingling, burning and pain. I still experience these to this day, but not nearly at the intensity that I did several years ago, (many thanks to Paleo and AIP).

Whoever said sensory symptoms are not debilitating, has never walked in a numb/tingling/burning persons shoes.