Unfortunately, chronic pain is a big part of NF. Many people who have neurofibromatosis struggle with it. This can vary from migraines, to joint pain, and can even include mental pain or problems, such as ADHD and anxiety. I happen to be one of the many people on the boat of chronic pain.
For me, it’s mostly migraines, back pain and anxiety. Although it’s believed that a large majority of my back pain is from my spinal fusion I had in 2010 at the age of 13. I’m not one to let pain slow me down, although I do have days where it’s unbearable. I find the more active I stay, the less pain I have, at least as far as my migraines go. I have tried many things for my back pain and nothing really seems to help, which is why I focus on staying active enough to keep my migraines away. Again, I have days where it’s unbearable but I do try my hardest. Between my 6 to 7 mile run each morning, my hands-on hard labor job, and activities after work such as dance class, bike rides, hula hooping, and jump roping, I do tend to stay on my toes.
Although activity works for me, that’s not to say it will definitely work for someone else. I found what works through trial and error, and anyone wishing to diminish their chronic pain from NF should do the same.