I’m Not Crazy!

One of the most frustrating things for those of us who are facing chronic pain are the low-skilled doctors we run across in our journey for answers. Instead of admitting they have not yet attained the skills to understand or diagnose our condition, they put the blame on us and say, “It’s all in your head!”

If you’re a chronic pain sufferer, your ears probably just got red from anger and frustration or at the very least, you are rolling your eyes. If you are in pain but have never been diagnosed, don’t give up, you’re not crazy! It is a frustrating journey that sometimes seems endless, but I pray my blog will encourage you to keep going until you find answers.

Doesn’t Everyone Hurt?

A few years before my diagnoses, while I was still in my late 20s, I was driving in my truck with a close friend of mine. He was a very large man who was significantly overweight; otherwise, he seemed fairly healthy. I was hurting a little more than usual that day so I figured I would ask Steve about his pain level. I figured if we spent a minute or two telling each other how bad we hurt, I would feel better. I asked, “Do you just ache all over?” He said quickly with no hesitation, “No, I don’t have a pain in my body.”  I know I must have had the most dumbfounded, blank look on my face because I was in complete, utter shock.

You see, I was an avid weightlifter who was in great shape. I could do anything I wanted to do physically for hours on end, but there was always this nagging, sometimes severe, pain. I certainly thought someone as overweight and sedentary like Steve would hurt way more than me. I couldn’t believe what I was hearing so I had to verify. “You don’t have any pain, anywhere in your body?” I emphasized the word “anywhere.” Nope, not a bit. My journey to find answers began…

Of Course I’m Happy

I sat there rather melancholy as the doctor exclaimed with exuberance, “Good news! You don’t have ALS!” Okay, thank you, I responded emotionless. Well, aren’t you happy? ALS is a horrible, horrible disease that totally disables its victims and it always ends up in death.

I told her, of course I was happy, I was just hoping to find answers as to why I hurt so much. She had the same blank stare I had with Steve years earlier–she didn’t understand. She probably didn’t have a “pain in her body.”

This test was a long shot, I knew it and I shouldn’t have been so disappointed. But after so many doctors with so little answers, I was desperate and was willing to try anything. I didn’t want ALS, or any other life threatening disease. I just wanted answers.

After countless different doctors with various specialties, multiple x rays, MRIs, blood tests, braces, various medications, etc. I was tired, I was really tired. Not to mention, my wallet was getting lighter with each visit and I still didn’t have any answers.  

I wasn’t going to see anymore doctors–that was it, I would just live with it! Well, that was short lived. The pain was so intense, I couldn’t think, I couldn’t sleep, I barely functioned.

My wife encouraged me to try another rheumatologist since I haven’t tried very many doctors of this discipline. She said he was really good, respected across the nation for his expertise. Okay, I agreed to try–I knew another disappointment awaited me but maybe I could at least get something to curb the pain.

This Devil Has a Name

I can’t believe I have been in this doctor’s office for six hours! I have never had this many tests done on me! I wonder how much this is going to cost me?! I was thinking to myself as I braced for one of the normal answers:

  • I’m not sure exactly what is going on, here’s a prescription for some antidepressants.
  • Take some ibuprofen.
  • Have you thought about seeing a psychiatrist?
  • You’re in tip top shape! You can pay the receptionist on your way out!
  •  
  • I remember my eyes welling up with tears and I even got dizzy when I heard the doctor say with complete confidence, “Well, I know what is wrong with you. Unfortunately, there is no cure but we can slow the progression down with proper treatment.”

Thinking back, he must have thought I was crazy being so chipper for someone who was just told they have an incurable disease or, more accurately, a family of incurable diseases.

Once my out of body experience was over and the dizziness passed, I heard him calling these devils by name: Psoriatic Arthritis, Sjögren’s Syndrome, Ankylosing Spondylitis.

The Fight is On!

I don’t even remember driving home from the doctor’s office. All I could think is I finally knew what to fight. It is real, I knew I wasn’t crazy! “It is real!” rang over and over in my head. I don’t know how many times I read my rheumatologist’s report that night, but I was ready to fight now.

That was almost 20 years ago. It hasn’t been easy at all living with chronic pain, but it would have been so much worse without this amazing doctor. He was able to slow the progression down as promised. I am so grateful that my loving wife encouraged me to continue looking for answers.

There are answers out there for you too. Don’t give up, keep pressing, keep searching. Keep connecting with others–there really is hope.  

God Bless… Danny