My mom and I both live with MS, but we have had extremely different experiences with diagnosis, treatment, and symptoms. I sometimes find it hard to believe what a difference the decade that elapsed between our diagnosis has made. Back when my mom first had symptoms it was not uncommon for an MS diagnosis to take years to make, and people were often treated as though their symptoms were all in their head. Some people became extremely wary of the medical community after they looked them in the eyes and insisted that pain is not a symptom of MS, despite the very real pain that they were in. Now as a healthcare provider, an MS nurse, and as someone living with MS myself I can’t believe what my mom and others went through. I have experienced first hand the many shades of MS pain, and I’m here to tell you with absolute certainty that pain is a symptom of MS.
As a healthcare provider we always ask the same questions when someone reports that they are in pain. On a scale of 1-10, how would you rate your pain? Is it sharp, dull, aching, or burning? Does it come and go, or is it constant? Does anything make it better or worse? Where does it hurt? My brain had been trained to categorize symptoms into neat boxes, until MS came along. MS pain refuses to be put into a box!
Initially my main issue was numbness and sharp pains in both legs. It was very strange to be both numb and have pain. It seemed like it should be impossible to feel less and have pain at the same time. It was almost like the sensation you have when your limbs are waking up after falling asleep, but constant. I often describe it as feeling like “static”. Whenever I walk or exercise I know that I will have to deal with the static-like pins and needles from the waist down until I rest and cool off for a while.
With my second relapse I experienced a completely different type of pain. I woke up one morning and it felt as though my left leg had been plunged into an ice bath. My whole leg was enveloped in an ice-cold burning pain. I couldn’t stand putting any weight on it at all because of the electric waves of pain that occurred as a result. It took a round of IV steroids to take away the freezing cold burning sensation and get me back on my feet after that.
I also experience hypersensitivity occasionally, especially after being overheated. When this happens I get sharp, shooting pains with even the slightest touch. Life becomes a constant game of “keep away” as I try to avoid people patting me on the arm, or even giving me a hug.
The most common pains that I deal with are the random jolts of sharp nerve pains that I get in my limbs, and the knifelike pain that shoots down my spine whenever I move my head. I also often struggle with the tight cramping pain of muscle spasticity. It’s like I just did an intense work out, only without the health benefits! Massage, rest, and heat are my go to management techniques for spasticity, and Neurontin luckily does a nice job of taking the edge off of the sharp nerve pain.
Not to be forgotten are the headaches, migraines, and the pain associated with using mobility devices that many of us live with. Many people with MS experience trigeminal neuralgia which is a severe nerve pain in the face that runs along the trigeminal nerve. And lets not forget the psychological toll that living with all these varies aches and pains can have!
There are 50 shades of MS pain. It is very real, and very different to everyone who experiences it. I hope those of us living with MS always find the courage to advocate for ourselves, and I hope that we as providers take the time to listen to what our patients are telling us.