Okay, so here’s the story of the time I thought I’d found the right person to help me, which of course, made it all the more disappointing when it didn’t turn out to be the case.
In telling my story, I’m choosing to gloss over every little ache and pain I had; every time I thought I had some kind of injury, but no one could actually find anything wrong. It’s not really necessary to the story, and I don’t want you to get bogged down in negativity. The point, again, is that I did eventually find answers.
But here’s the story of the first time I thought I’d found them.
***
It was 2006; my first time seeing a physiatrist. Physiatrists are doctors who specialize in non-surgical options to treat musculoskeletal pain– so, basically, they do everything else. Their approach is generally thought to be more holistic. They can provide options such as lidocaine and cortisone injections, but they also look at the patient as a whole person and can recommend lifestyle changes as well. It’s a pretty cool specialty.
And I was pretty much seeing the best one. I loved Dr. V. the first time I saw her. She’d won all kinds of awards for going above and beyond to help her patients. And she was just so… nice. She provided me with so much hope.
Dr. V. reassured me that there was no reason, as a healthy person in my early 20’s, I shouldn’t be able to do all of the things I wanted to do.
She recommended a bunch of promising options, including trigger point injections, as well as medical acupuncture, which she actually performed herself.
And she was the first person to really explain to me that my brain was magnifying the sensations of pain I felt, “like a computer.” My brain was “zooming in” and making what should be a small problem, or no problem at all, look like a big problem.
For a time, I really thought Dr. V. was going to be the one to finally “fix” me, to finally reverse this impossible pattern I’d been dealing with for so long. I felt like she really got me.
***
Dr. V. seemed to understand that, from time to time, I would come in with pain in a new part of my body, and would need someone to tell me whether, in fact, I had an injury or whether it was just pain.
There were so many times. I felt safe; I felt believed. I just needed a place to go where someone could tell me whether or not I had an injury or not. I didn’t always need to be referred to physical therapy, or start some new treatment. Sometimes, the pain would just diminish once someone actually told me it was safe to ignore it. (Which, as I later learned, makes 100% sense once you learn about how the nervous system works).
The only thing is, Dr. V. did want to refer me elsewhere: to therapy. She seemed to understand that my brain was distorting my perception of pain, but she kept coming back to the idea that it had a psychological or emotional cause (which, I would later learn, is not a prerequisite for central sensitization).
She offered me the names of a few different therapists she had come into contact with over the years. I would go and see them, but nothing ever really “clicked.” Because we were looking for something that wasn’t there– my pain wasn’t being caused by my emotions.
***
What I really needed, again, was for someone to help me understand my physical pain. As I’ve explained in my Calming Your Nervous System section of this blog, when you have the kind of chronic pain I had (and still have, to an extent) it’s like your body’s pain protection system has gone into overdrive. It’s trying to protect you, but it’s stuck in the “on” position all the time.
Luckily, the nervous system is complex, and although there are multiple components involved in keeping this process going, there are other aspects of the nervous system which can be used to turn the system “off.”
One way to do that is to understand, rationally, that your body isn’t actually in danger; that you aren’t actually injured. This is actually the pain principle behind Pain Neurophysiology Education, the approach to chronic pain treatment that finally helped me.
Of course, I didn’t know any of this at the time, but I sort of stumbled upon this principle myself. A new part of my body would hurt (or an old one would start hurting again) and it would feel real. It would feel like something was wrong; something was injured or on the verge of breaking.
That’s why it helped me, to go in and see Dr. V. To be examined by an actual doctor and be told nothing was wrong. It helped my nervous system feel “safe” again. Usually, I’d start feeling better within a day or so after my appointment, before I even got to physical therapy or whatever next treatment she’d recommended. Because she’d already given my nervous system permission to relax and stop hyper-focusing on that part of my body. The pain would be able to fade into the background.
And I was okay with this pattern. It wasn’t ideal, but it was better than anything I’d found yet. We hadn’t actually been able to break this cycle of mysterious pain that roamed throughout my body, but at least, with Dr. V. I’d been able to find a way to stop it from taking over my entire life when it started to get bad.
***
But here’s the thing. I was okay with the holding pattern, but Dr. V. was not. Because I wasn’t actually getting “better” in a linear fashion that she could write in her notes. And because she could never actually find anything wrong with me.
There was one day I was 10 minutes late for an hour long appointment. I’d had to take the Red Line to Mass General, where I saw her, and everything about that morning commute had just been a disaster.
And from the moment she walked into the room, everything had changed. Her face seemed cold, like there was less color in it than usual.
And she told me she didn’t have time to see me that day. That I’d been taking time away from her other patients; other patients who actually had horrible diseases and disfigurements and reasons to be in pain.
She said she’d tried to help me, but I hadn’t successfully utilized any of the options she’d given me. And that if I wasn’t going to be responsible about trying to fix my issues, she wasn’t going to have time for me in the future.
And that was that. I started to cry and attempted to explain myself, but it didn’t matter. Her mind was made up.
She said she didn’t have time to stay and talk to me if I’d already missed 15 minutes of our 30 minute appointment. Her secretary, who I’d sort of become friends with, overheard the whole thing and poked her head into the room, gently reminding Dr. V. that my appointment was actually supposed to be for a whole hour.
But it didn’t matter; Dr. V. was so angry at that point that no new information was going to make a difference. It wasn’t really about the time; it was about getting rid of me.
She didn’t outright tell me never to come back and see her again, but by walking out of the room after 5 minutes, she’d made her message pretty clear.
So I never did.
***
Now that I know so much more about central sensitization, I can see that Dr. V. was wrong on multiple levels. This is why I like to remind people that central sensitization was actually discovered in rats. It has to do with brain function and neurons and neurotransmitters, not thoughts and feelings.
Somehow, it was like Dr. V. had vaguely heard of central sensitization somewhere, but hadn’t really gotten the full gist. A lot of people are like that, actually. They accept that the nervous system can process pain abnormally, but still think it must have to do with emotions.
And I never actually heard the term from her. I only learned it once I requested a copy of all of my visit notes and saw it there, in my list of diagnoses. It was #1: central sensitization.
That whole time– she could have just told me the name for it. I didn’t even know there was one. I could have learned about it myself– I could have Googled it. It was discovered in 1983. There was more information out there than I was given.
But no. Central sensitization was just there in two small words, right under a lot of passive-aggressively worded comments about exactly how much of my appointment time I’d missed that last time.
***
It’s sad and it’s really shocking. I do believe that Dr. V. is a good person who just didn’t have enough information, and who got frustrated.
But it shouldn’t be my job, to get “fired” as a patient and request my own office visit notes, only to finally learn there’s a scientific name for what I was going through that she’d never even bothered to tell me.
I could have looked it up myself and learned about it, instead of going on countless wild goose chases to psychotherapy and the terribly disappointing pain clinic she once sent me to.
***
But at least I have answers now, and you know what? I think I’m sort of proud of myself for getting as far as I did, on my own. After all, it basically means I’m a genius, since I was able to stumble upon the main principle of pain neurophysiology education all on my own (right?).
***
As you may know, what really did work for me eventually was to meet a physical therapist who had studied PNE with Neil Pearson. This physical therapist taught me how to understand my nervous system, and to work with it, instead of against it, and to learn ways to get my body to turn the “volume” of the pain back down.
This is why I feel so, so strongly about PNE, and why I was originally inspired to become a physical therapist.
In a way, Dr. V. is part of my inspiration as well– I see how important it is for healthcare practitioners to actually understand the specifics of how chronic pain works. It’s not enough to just be an empathetic person, because apparently empathy can be replaced by frustration over time, if a patient isn’t getting better.
If you want to know more about PNE, you can check out the Calming Your Nervous System section of my blog, and also definitely check out the work of Neil Pearson!
Hope this was helpful!
Rosalind Pearl
October 22, 2017 at 10:45 pmWoah, this is shocking, to have had that experience with a doctor, and such a radical transformation. Can only imagine how hurtful that must have been, but how amazing that you’ve managed to sculpt your own deliverance from that helpless situation! I’m aspiring and trying to do the same so I appreciate firsthand that it’s no easy task x
sunlight in winter
October 23, 2017 at 4:36 pmThank you so much for the kind words, Rosalind 🙂 I really appreciate it!
Rosalind Pearl
October 22, 2017 at 10:45 pmWoah, this is shocking, to have had that experience with a doctor, and such a radical transformation. Can only imagine how hurtful that must have been, but how amazing that you’ve managed to sculpt your own deliverance from that helpless situation! I’m aspiring and trying to do the same so I appreciate firsthand that it’s no easy task x
sunlight in winter
October 23, 2017 at 4:36 pmThank you so much for the kind words, Rosalind 🙂 I really appreciate it!
Deb
November 24, 2017 at 1:32 amBy some kind of tremendous serendipity I watched a talk by Neil Pearson just the other day. He gave One of the most understandable explanations for persistent pain that I’ve heard (and I’ve heard a few no, after 5 years of it). Got so excited I needed to leave this comment before I clicked on the link to see what you’d learnt from him about calming the nervous system. Looking forward to learning from you and him, and trying it out. Thanks so much – so grateful!
sunlight in winter
November 24, 2017 at 9:30 pmHi Deb— wow, that is serendipitous! I’m so glad you found my blog— hope the things I write are helpful!
Deb
November 24, 2017 at 1:32 amBy some kind of tremendous serendipity I watched a talk by Neil Pearson just the other day. He gave One of the most understandable explanations for persistent pain that I’ve heard (and I’ve heard a few no, after 5 years of it). Got so excited I needed to leave this comment before I clicked on the link to see what you’d learnt from him about calming the nervous system. Looking forward to learning from you and him, and trying it out. Thanks so much – so grateful!
sunlight in winter
November 24, 2017 at 9:30 pmHi Deb— wow, that is serendipitous! I’m so glad you found my blog— hope the things I write are helpful!
Emily
August 26, 2018 at 9:49 amHi Christy, I am here because I have seen many doctors over the last year to find answers. Have recently suffered a full body meltdown (or wind up) and is taking me a long time to recover and looking back this happens every few months in the year and this is my worst. I traveled to see a Dr who after a few weeks has told me to research central sensitisation. He has said I could agree or I could disagree with him. When he said that and I started reading into this subject, it is like I had already intuitively understood it was my nervous system it all made sense. I understand how easily people, even (especially) Dr’s can misunderstand conditions like this, be detrimental to healing and dismiss correct procedure. I am so happy I came across your story and so sorry you had to experience what you did. Im grateful it brought you to where you are now. I feel empowered by the concept of understanding my body and my mind in such an in depth way that I can reverse this, thats how I felt when I started researching. I went and found a book on the full body and neurological nervous system. however, I woke up the next day so worried that the complexity of this will be overlooked and misdirected at times when I needed support. That I would experience what you have. I feel a bit more empowered now because I know your right <3 Thank you
Sunlight in Winter
August 29, 2018 at 8:52 pmHi Emily, I’m so glad to hear my blog was helpful to you in this way! Sometimes I wonder why I put all these personal details out there, but comments like yours make it all worth it! Yes central sensitization is pretty complex, but it also provides such a great explanation for so many of the confusing symptoms we can expedience. Wishing you the best of luck on your helping journey!
Emily
August 26, 2018 at 9:49 amHi Christy, I am here because I have seen many doctors over the last year to find answers. Have recently suffered a full body meltdown (or wind up) and is taking me a long time to recover and looking back this happens every few months in the year and this is my worst. I traveled to see a Dr who after a few weeks has told me to research central sensitisation. He has said I could agree or I could disagree with him. When he said that and I started reading into this subject, it is like I had already intuitively understood it was my nervous system it all made sense. I understand how easily people, even (especially) Dr’s can misunderstand conditions like this, be detrimental to healing and dismiss correct procedure. I am so happy I came across your story and so sorry you had to experience what you did. Im grateful it brought you to where you are now. I feel empowered by the concept of understanding my body and my mind in such an in depth way that I can reverse this, thats how I felt when I started researching. I went and found a book on the full body and neurological nervous system. however, I woke up the next day so worried that the complexity of this will be overlooked and misdirected at times when I needed support. That I would experience what you have. I feel a bit more empowered now because I know your right <3 Thank you
Sunlight in Winter
August 29, 2018 at 8:52 pmHi Emily, I’m so glad to hear my blog was helpful to you in this way! Sometimes I wonder why I put all these personal details out there, but comments like yours make it all worth it! Yes central sensitization is pretty complex, but it also provides such a great explanation for so many of the confusing symptoms we can expedience. Wishing you the best of luck on your helping journey!
rachelmeeks
December 4, 2018 at 11:32 amThat is a heartbreaking doctor story. I’ve been fired by doctors before too. It’s awful. I’m glad you found answers eventually though!
rachelmeeks
December 4, 2018 at 11:32 amThat is a heartbreaking doctor story. I’ve been fired by doctors before too. It’s awful. I’m glad you found answers eventually though!
Robyn
October 17, 2020 at 7:25 amI learned about CS early in my journey, about 3 months after the injury that set it off. A PT I saw named it “peripheral sensitization” and told me to use my painful leg and ignore the pain. I resesarched online and didn’t relate to CS or PS as my issue was more swelling and not pain. Now, nearly a year later and well into a rehab program I designed myself based on Lorimer Moseley’s principles of DIMS and SIMS, I believe I do have a form of CS that causes more inflammation than pain. I’ve lost trust in the medical system regarding this issue, and fortunately the internet has given me the information I need to make good progress in managing and nearly curing my symptoms. 🙂
Christy Collins
October 17, 2020 at 10:28 amHi Robyn, sorry to hear you went through this, but that’s really cool you were able to figure so much out! If swelling was involved that actually sounds to me more like Complex Regional Pain Syndrome (CRPS). It used to be called Reflex Sympathetic Dystrophy.
You might find talks by people like Dr. Elliott Krane and Dr. Sean Mackey very interesting!
I have a talk by Dr. Krane on my site: https://sunlightinwinter.com/2017/02/02/elliot-krane-chronic-pain/
Dr. Mackey https://www.youtube.com/watch?v=Uo1UNea_tfQ
Good luck as you continue to heal!
Robyn
October 17, 2020 at 7:25 amI learned about CS early in my journey, about 3 months after the injury that set it off. A PT I saw named it “peripheral sensitization” and told me to use my painful leg and ignore the pain. I resesarched online and didn’t relate to CS or PS as my issue was more swelling and not pain. Now, nearly a year later and well into a rehab program I designed myself based on Lorimer Moseley’s principles of DIMS and SIMS, I believe I do have a form of CS that causes more inflammation than pain. I’ve lost trust in the medical system regarding this issue, and fortunately the internet has given me the information I need to make good progress in managing and nearly curing my symptoms. 🙂
Christy Collins
October 17, 2020 at 10:28 amHi Robyn, sorry to hear you went through this, but that’s really cool you were able to figure so much out! If swelling was involved that actually sounds to me more like Complex Regional Pain Syndrome (CRPS). It used to be called Reflex Sympathetic Dystrophy.
You might find talks by people like Dr. Elliott Krane and Dr. Sean Mackey very interesting!
I have a talk by Dr. Krane on my site: https://sunlightinwinter.com/2017/02/02/elliot-krane-chronic-pain/
Dr. Mackey https://www.youtube.com/watch?v=Uo1UNea_tfQ
Good luck as you continue to heal!