They don’t tell you to prepare for the unbearable nerve pain that comes with MS. Apparently it is not one of the “more common” side effects of the disease so count yourself as lucky if you do not get this.
I take Amitriptyline for my dysesthesias, it is an “off label” use for this issue but it has been working for me, more or less. Though the last few days I have had increasing nerve pain that started in my legs only at night and progressively moved to my full body and all day. Yesterday was the worst, it got so bad I was ready to go to the emergency room, and I HATE emergency rooms. I have spent too much of my life in hospitals to go there unless it’s the last resort.
It felt like someone was stabbing every part of my body with little needles, and not just my skin (that’s what happens when my core body temp increases to much, another fun thing with MS) all of my organs too. It is hard to properly describe what it feels like to have your entire body being pricked with needles and how you can feel it in your organs, but it is not hard to explain that this pain changed my level of patience with people, my pets and my kids.
Driving home with my children, I was in so much pain my body was moving in response. My oldest told my husband later that it looked like I was trying to use the force on cars in front of us with my hands while they were still on the steering wheel. I felt my upper body contorting to try and relieve the discomfort, it did not work. The normal bickering of brothers drove me mad and when children tried to hug me goodnight I cringed and had to tell them to stop. My husband held my hand as long as I could stand it while we were watching a show and I finally had to pull away because the sweet, loving gesture of rubbing his thumb on the top of my hand was causing me pain.
I ended up taking an extra pill of Amitriptyline, I normally take 2 but the doctor said I could go up to 3 so I knew that was ok. I also took a Vicodin that I had for my migraines and back/hip pain. Then I put ice packs on my body so I could numb the sensation a bit and finally got to sleep. This morning I am in less pain so I will be increasing my dose temporarily and speaking with my doctor but I have staved off another trip to the ER for today.
It’s hard to explain to children why you are extra snappy on certain days and what the sensation you experience feels like so they can understand. It is also heartbreaking for me to have to tell my kids they can’t touch me because it causes me pain.