This post is the first in a series of posts about my life-changing experience of pain neurophysiology education. To see a list of all of the posts, click here!
Part One: Hitting Rock Bottom.
A few years ago, I was at one of my lowest points. A few things happened in my life, all within a short time period, that caused my pain levels to flare up. I had been attacked by a client at the group home where I worked. In the attack, I was thrown against a wall, which, of course, was not great for my neck and back pain. The week before, I had sprained my ankle and was having trouble walking. I was also beginning to experience the beginnings of chondromalacia patella in my right knee.
It was a horrible time in my life. I was going from doctor to doctor, begging for someone to help me, to give me a diagnosis. I couldn’t understand why I was in so much pain; it was like it had taken over my whole body. I was afraid there was something wrong with me, deep down, at a cellular level. I started reading about something called fibromyalgia online, and was frightened by what I read. I realize now that I what I was reading was out-of-date information, but at the time I became very frightened that something in my body’s chemistry was off, causing problems with inflammation.
The absolute worst moment was when I went to see a pain specialist at a highly-regarded hospital near me.
This guy looked great online. He actually listed fibromyalgia amongst his clinical interests. He wasn’t just a random doctor; he was the head of the anesthesiology department. He also had a law degree, which I figured meant he was really smart.
But he was no help at all. Most of the appointment was conducted by a resident (medical student in training). Because he could see many of my records from other physicians electronically, he didn’t seem to think he needed to do an examination of his own. Not once did he walk across the room and look at my back.
I tried my best to express how bad things were. I explained the fears that had plagued me for months, that I was afraid I had fibromyalgia, or a problem with inflammation. Despite the fact that he’d listed “fibromyalgia” within his clinical interests, he seemed to have no idea what I was talking about. I also asked him if he could give me some medication for the pain. His eyes got wide, as he suddenly “remembered” that every new patient was supposed to receive a drug test.
I left that day with a lump in my throat and my pride wounded. Somehow, this whole appointment that I had been looking forward to for so long had boiled down to the doctor thinking I just wanted to get high.
*****
The only good thing to come out of that appointment was that the doctor referred me to physical therapy at another hospital in the area. Without going into any detail, he said that a lot of his patients had had “luck” there.
I had actually been to physical therapy at the same hospital a few years earlier, when I had first hurt my back. I had really liked my physical therapist at the time, so I decided to go back. As luck would have it, they scheduled me with the same guy.
I filled out my intake paperwork, following the instructions and putting an “X” on the little diagram where they ask you to mark the areas where you have pain. I must have put about twenty X’s on the paper.
When Tim saw this diagram, he paused for a moment. “Hold on a second,” he said. “I’ll be right back.”
When he came back into the room, he explained that he’d asked the secretaries to make a few changes to my referral. He explained that the number of X’s I’d placed on my paper was alarming, that it was a sign there was something more going on with me than just “back pain” or “knee pain.” Instead, there was an underlying factor, causing me to experience pain in so many parts of my body. It was, he said, my nervous system.
“You’re really going to have to trust me on this,” he said. “I know it’s confusing to hear at first, but when people get like this, it’s because their nervous systems are processing pain differently. There’s no way you have injuries in this many different parts of your body, when you haven’t been in a car accident and you’re so young. I am going to teach you about what’s going on. Once you begin to understand that all of this pain is coming from your nervous system, we can start to work with that. You’re going to have to give me the benefit of the doubt in the beginning, but we really can help people get better.”
Click to continue to Part Two.
healthiestbeauty
April 18, 2013 at 4:36 pmReblogged this on The healthiest beauty.
sunlight in winter
April 18, 2013 at 5:04 pmThanks for passing this on!
Helen Lear
April 18, 2013 at 8:22 pmI’d love to hear more about what your physical therapist did with you!
sunlight in winter
April 18, 2013 at 10:52 pmYou will! 🙂
brain injury self rehabilitation (BISR)
April 18, 2013 at 11:59 pmI’m sending you a hug! This is typical of struggling with chronic illness/injuries. It’s sad that so many healthcare professionals blow off these symptoms, but thankfully you had an intelligent physical therapist that had independent thought! All too often, we don’t get second, third, or two hundred opinions…we get the same opinion when it’s negative. Once it’s charted “hysterical”, “anxious”, “hypochrondrical” … these labels never leave and it’s really hard to get treatment. It should never be that way, but I’m finding it’s common!
Unfortunately, so many are suffering and they are just trying to get better so everyone moves from one physician to the next until someone listens! I have a high regard for physical therapists and occupational therapists, especially when they have experience with neurological issues.
How are you doing now? Take care and stay safe.
sunlight in winter
April 21, 2013 at 8:11 pmThanks for the hug, Edie! I am doing much better these days than I was in the time of my life I’m describing in this post.
I don’t have much experience with occupational therapists, but I have found many great physical therapists over the years who have helped me way more than some doctors. (Of course I say some, not all– I’m grateful for the two surgeries I’ve had in my life, both of which went smoothly!).
But there’s definitely a reason why, everything else considered, I would rather be a physical therapist than a doctor. We need more people with the skill to help patients through the complicated, non-acute problems that can only be unraveled over time.
lucybythesea
April 19, 2013 at 7:19 amLooking forward to hearing more. The only medical professional who has really helped me with my fibro was a physio – he was awesome. x
sunlight in winter
April 21, 2013 at 8:13 pmThanks Lucy! Part 2 will be coming soon. It would be interesting to see if our PT’s (do you use that abbreviation too?) used similar strategies.
findingmyinnercourage
May 17, 2013 at 2:03 pmOhhhh does this bring back memories from “in the beginning” for me! Extremely well written. On to part two!
Michael Millman
September 4, 2013 at 12:06 pmSharing this with the Pain BC community. Neil is on our board. Thanks!
sunlight in winter
September 4, 2013 at 12:42 pmThanks for passing it on!
Ryan
September 10, 2013 at 4:48 amHi. I’m dealing with CRPS and I am desperate to find a physical therapist such as the one you mention in your blog (I have been searching with no success). Could you please email the name of the therapist that assisted you. I am at rock bottom. This would be greatly appreciated. I can’t do this alone anymore. Thank You
Anonymous
September 10, 2013 at 1:36 pmHi! Im re-reading your posts/blog as it really helps me to know someone else out there went to so many “Good” doctors and did not receive the proper treatment. Not that I want that to happen to anyone, but if it does it is nice to hear about it as you can feel pretty alone in that diagnosis jungle and maze of top doctors who don’t ever look let alone feel your back. I always thought to myself, if they would just feel my back, maybe they would tell what was wrong. So, thank you for writing and I was wondering what state you live in because your physical therapist sounds wonderful. I went on a high search for good physical therapists in NJ, but have not found one with the mindset that yours has.
irene
September 10, 2013 at 1:38 pmIm sorry I didn’t fill out the form right. the one that says anonymous on sept 10 is me, my name is Irene
sunlight in winter
September 10, 2013 at 10:00 pmThat’s ok… I’m sorry to hear you haven’t been able to find someone helpful. I live in Massachusetts.
I’ve had a few comments like yours, from people asking if I know of anyone who can help them. I always feel bad that I can’t help. I think that in the future, I might try to start a directory of PT’s with training in pain science. (I would do it right now, but I don’t have enough names to make a list yet). Stay tuned!