The buzzing throughout my arms, hands, legs and feet had not let up for 3 full days. My annual checkup with my neurologist was just a day away, so I figured, what better timing? I practically danced into the office and was so excited to get some answers about this newfound pain.
Enter the man of the hour, and come to find out, it’s… all… in my head? Excuse me?
Everyone tends to experience very different symptoms when it comes to their own personal journey with MS. Some people react poorly to the heat, some have chronic headaches. For me, the pain I experience is something similar to growing pains. You know, that stretching and throbbing sensation you used to get when you were hitting your growth spurt? Now, take those growing pains and amplify that by about 1,000,000. That is the pain I experience most often in my own personal journey with MS.
I explained this to my neurologist, and he genuinely told me it was all in my head; that other than “numbness and tingling,” there is no other type of pain associated with multiple sclerosis.
When I stepped into that office, hopeful and looking for an explanation, I left feeling very distraught. No, a better word would be angry. I was angry that this was only happening to me and that no one else experienced this type of pain. I was angry that this disease chose me to send these abnormal throbbing sensations throughout my body and deep into my core. What made me special?
I spent some time thinking on it and concluded that I was not the one who was different here, but that I was given some faulty information. I decided to reach out to my supportive community through my Instagram account and asked other MS warriors like myself if they had ever experienced this pain, too.
I got about 15 messages in my inbox singing the hallelujah choir that someone else understood. That their neurologists had also told them it was all their imagination. It was both invigorating and terrifying. I felt so reassured to know that others understood exactly what I was going through, but I was also concerned at just how many physicians are out there telling their patients that their very real pain is only in their head.
Since the day of my diagnosis when my first neurologist told me my quality of life would suffer and I would never run again, I have questioned the word of others. I respect them for their education and appreciate the help they provide me, but I question everything. I run at least 5K a week and live in the gym. My quality of life is A-Okay, so I proved that first doctor wrong. I proved the second one wrong with my supportive community of amazing MS warriors, too.
At the end of the day, our experience is our own, but always remember something: this is your story. You are not crazy, you are justified in how you feel, and you are never alone. Keep pushing forward and remember that together we are stronger than MS!
Editor’s Note: For more information on MS and pain, check out our library of resources.
Playing the drums, which had been effortless and fluid, has become decidedly effortful and deliberate.