Living with chronic pain

Can you imagine not being able to laugh, chew, or talk because of chronic pain? I can! And it is an uncomfortable feeling.

August 2018, I started to experience pain like never before. It began with a headache and swollen lymph nodes. Then it progressed, and the pain traveled to my face. Everything was a trigger for pain; whether it was washing my face, brushing my teeth, talking, or laughing. I thought that the pain would go away, but it continued to get worse. It was starting to affect my everyday life.

Hate is a strong word, but I hate going to the doctor. The time it takes to get an appointment, then going to the appointment at the scheduled time to have to sit in the waiting area for 15-20 minutes then another 15 minutes or more for the doctor to finally evaluate you. But I couldn't let the pain continue any longer. I needed to find out what was going on.

I scheduled an appointment to see my primary care physician and explained all of my symptoms. She stood there before me looking confused. She could not tell me why I was experiencing this pain but referred me to a neurologist and prescribed me prednisone to help with the swelling in my neck.

I didn't want anything serious to be wrong with me, but I wanted to know what was causing all the pain. Going to that appointment made me feel even worse. Like she wasn't taking me serious. From the moment I woke up in the morning until the time I closed my eyes to go to sleep, my pain was real.

I took the prednisone as the doctor recommended, and over the next couple of days, my neck started to feel better, but the headache and face pain was still there. I tried over the counter medications, but they did not help at all. I began to experience an overwhelming sense of exhaustion, and it was challenging to make it through the day because of the pain. I would get spasms, sharp stabbing pains, around my mouth and extreme pain on the left side of my face whenever I opened my mouth, laughed, or would talk for an extended period of time.

In the meantime, I was miserable, tired, and frustrated!

For someone who already suffers from anxiety, it was starting to affect me mentally. But no matter how much pain I was in, I still had to take care of my family, work, and go to school.

It took a couple of weeks for me to get an appointment with the neurologist but FINALLY it was time for my appointment. He evaluated me, asked me questions about my symptoms and other medical conditions, then did test to check my mobility and coordination. He was concerned that it might be multiple sclerosis or something called trigeminal neuralgia, and recommended that I have an MRI on my brain and neck.

So…I had the MRI and went back to see the neurologist. He told me that the MRI looked okay other than my sinuses were inflamed and referred me to an Ears, Nose, and Throat specialist (ENT). He didn't want to prescribe me any medication since he was still unsure of what was going on with me but recommended I use an ice pack on my head and face to help with the pain.

Went to see the ENT and he said that I might have TMJ. He recommended that I follow up with my dentist. Now, I see my dentist every six months. So in my mind when he said TMJ I thought to myself that my dentist would have seen signs during my cleanings and would have mentioned it to me. Regardless, I followed his instructions and went to see my dentist. It was time for my regularly scheduled cleaning anyway, but because of the pain in my face, I couldn’t get my cleaning. Instead, my dentist evaluated my jaw and asked me questions about my symptoms. He felt my jaw and looked at my x-rays. Guess what he told me?


Meanwhile, the doctor bills were adding up. I was frustrated that I kept getting referred to a different specialist and still in pain. The pain was draining me physically and mentally, and again, no one could tell me why. The only thing that helped to relieve some of the pain were the ice packs. I would wrap them up in a washcloth and place it on my head and face.

Back to the neurologist I went. I explained to him that I saw the ENT and the dentist, and neither one of them could tell me what was going on. He asked me a few more questions. He pressed on the areas where I explained the pain was coming from, and diagnosed me with Trigeminal Neuralgia. Had no clue what that was. I never heard of it before.

Off to google, I went. I had to research what this Trigeminal Neuralgia was; a chronic pain condition that affects the trigeminal nerve in the face. The disease could be managed with medications, injections, or surgery. I was relieved to have a diagnosis but was not claiming it. I hate taking medicine, scared of needles and for sure did not want surgery. But I desperately needed some relief.

The neurologist prescribed me a medication called (Gabapentin) to help with the nerve pain in my face and the headaches. After reading what the pills were used for and the side effects, I had mixed emotions about taking them. But after being in pain for over six months, I needed something to relieve it.

It has been two months since I started taking the medication. After the second week, I felt a difference. The pain in my face pain was gone and my headaches subsided.

Now, when I wake up in the morning, I have the energy to make it through the day without having to take a nap during lunch. Best of all…I can laugh, chew, and talk without being in pain.

Real talk…Trigeminal Neuralgia is known as the "suicide disease" because it can be the worst pain known to humanity. Some people, like me, suffer in silence while trying to maintain a sense of normalcy in their life.

I am learning how to manage this chronic pain when it attacks. Here's what's been helping me:

  • Relaxation techniques - meditation, taking deep breathes and relaxing my mind and body, blocking any distractions or thoughts.

  • Listening to music - Gospel and R&B

  • Less stress - give it to God to handle

  • Eating habits - soft moist food that is easy to chew

You never know what a person is going through. To the many people who are living day to day with chronic pain, you are not alone in your journey to find relief. I pray that you find the cause of your pain and relief.

Be blessed!

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