Chronic pain and seeing my new Pain Psychologist (and what my GP said)

If you’ve been reading here, you know I was referred, by my pain management doctor, to see the pain psychologist who works at the same practice.

It’s a multidisciplinary facility and they have several professions under one roof.

My pain management doctor referred me as a matter of course – she did not screen me for anxiety, depression or high levels of distress. She did not even ask my about my psychological health. She barely spoke to me, if I’m honest.

She referred me because she has no idea what else to do with me. Because I am already DOING everything she usually recommends. And have been doing all of these things consistently for many years.

A patient like me, who is already exercising, follows a nutritionally very sound diet, who has a graduate certificate in meditation and mindfulness, has engaged with pain psychology and physiotherapy, who is well educated in pain science and the neurobiology of pain, has good sleep hygiene, and is a qualified personal trainer…well, there’s not much left to talk about. Not many lifestyle choices to modify.

So she referred me to her pain psychologist.

I was not happy about the expense ($311 per hour-long session) but I was happy to meet with the psychologist. I have seen a pain psychologist previously, but it was many years ago. I received a clean bill of health from that psychologist. I was told I was doing everything right.

Since then, pain science education has become huge, so I was genuinely interested in what might have changed. And what new strategies and tools she may have to teach me.

If I am honest, I don’t believe I need psychological help. I have been in constant pain for almost 20 years. And I learned, almost 20 years ago, that the pain will be there, whether I am lying on the couch, at work, at the pub, or walking the dogs. So I may as well be walking the dogs, or at work. Doing something positive. Or something enjoyable

I have always gotten up off my butt and DONE things, despite pain.

I have always HATED lying on the couch.

I like doing active things, I don’t enjoy passive things. I hate living a sedentary life. I rarely watch TV. Couch time is boring and a waste of life.

I call it “couch jail” these days. Because my doctors have put me in couch jail. I don’t have to be here. They can “release me”. But they choose not to. The choose NOT to treat my, very treatable, pain.

I have also accepted this…to the extent that I can. And I continue to get up off my butt and DO things.

Until the pain gets to an ‘8’ or more. I can do nothing when the pain is an 8+. And my pain is at an 8+ for several hours, of every day. I am forced to spend those hours lying down, doing nothing. Just…breathing.

Waste of life.

TO be clear: Not only can I not do anything when the pain is at an 8+…no one can. 8+ pain is severe pain. It is simply NOT possible to have a functional, happy, enjoyable life when you are in 8+ pain.

Point is…while I didn’t believe psychology would help me, or reduce my pain, I secretly hoped it would. I hoped she would have some new strategy, some new tools, something.

I am an optimist. And I am open to any therapy that has some evidence behind it. (I do NOT do woo. You can keep your homeopathy to yourself.).

The pain is very hard to live with at the moment. It has been severe, as has the muscle weakness. Walking is near impossible today, my legs will not do what I want them to. I cannot make them do what I want them to do…because my nerves are being slowly eroded away. A powered wheelchair is looking like something I will need soon, and that idea does not please me.

And I do get tired. I do get worn down with the pain.

This does not increase my pain, however.

I was completely honest with the pain psychologist. I told her all of the above. She sent me her usual intake questionnaires, and I answered those honestly. It’s the only way therapy can work.

I told her my philosophy on pain. I told her I learned all this stuff years ago, and I didn’t need to be taught, I figured out how to manage my pain myself. Most of it is common sense, as far as I’m concerned. I was very fit and active, until the pain became so severe, I was unable to be active. Then I was given opioid pain medication and I was able to be active, and therefore fit, again.

Opioids saved my life.

Then my opioids were taken away.

Opioids are the ONLY thing that have any effect on my pain. Nothing else influences my pain (anymore). I have tried literally everything, in pharmacological and non-pharmacological treatments.

Added to that, I have learned much about the neurobiology of pain. About Pain Science Education, as it’s currently referred to. In its various forms and brands.

I told her learning about pain science did not reduce my pain at all, or even effect my pain at all, because I am not anxious, depressed or distressed. I told her I have no emotions tied up in my pain…because I have been in pain for almost 20 years.

In the beginning there were emotions. There was some catastophising – for example, I remember thinking “if the pain is this bad now, at 35, what will it be like at 55? “

Well, I know the answer now, and its ‘pretty effing bad!’. But I didn’t know that then. I did not waste my time worrying about a future that is unwritten.

I realised, very quickly, that worrying is pointless. Wasted energy. And my energy is very precious.

What will be, will be, and worrying about it won’t change anything.

So…I stopped catastrophizing very early on. And yes, for me, it IS that simple.

Ultimately, I am a pathological optimist. To my own detriment, sometimes. You CAN be too positive, and sometimes I am.

I had two sessions with this psychologist, or rather, one and a half. I like and respect her very much; she has an excellent manner and knows her stuff. She is very clear and explains things well. She is capable of adjusting her lesson to the person’s knowledge. She realised quickly that I am already quite knowledgeable. Unlike other practioners, she didn’t dumb it down. She targeted the information at my level.

“Meet the person where they are at”.

People constantly SAY this. This psychologist is the only health care practitioner who has actually done this, with me.

There was nothing new in the information she imparted, for me. But she had her own ‘way’, or own style. She explained pain well.

No light bulb moment for me, however. Because I already know all of this stuff.

Then we talked about tools and strategies. I told her my philosophy, and its basically “just get on with it”. Until I can’t. Rinse and repeat. Every single day.

When I have pain medication, I work, as hard and as fast as I can, to make the most of that pain relief. Whether I am working in my business, or working out in the gym, I use those few, precious, hours of pain relief to get the most done I possibly can. I work, until I can work no more. Then I rest. I wait until I am allowed to take my next dose of pain medication. And, once it takes effect, I get back to work. Until I can’t. Repeat, ad nauseum.

That’s my whole life. Little chunks of chemical pain relief.

Again, opioids are the only thing that have any effect on my pain. I have tried everything else. Most things at least twice.

She then suggested we work on a few exercises. She asked me to visualize my pain. She asked me to focus on the worst pain and to tell me what shape it was.

AT that time, my foot was the worst, so I described my foot.

She said that was not what she was looking for. She wanted the shape of my pain, not the shape of my foot.

I was flummoxed. My pain does not have a shape. I said so. She tried a few more things, ways to explain what she wanted. I told her I didn’t understand what she was getting at…what I was supposed to do.

She said she would change tack. And asked what colour my pain was.

My pain does not have a colour.

I was confused, and I told her so. I apologised for my lack of understanding. I genuinely did not know what was expected of me here. I didn’t have an answer. My pain is not like that…I don’t see my pain that way.

To be honest, I felt like a failure because I was unable to visualize a colour, or a shape, for my pain. My brain just doesn’t work that way. My pain does not have a shape, or a colour, or an emotion. It’s just pain.

I said that to her.

She told me it was OK, maybe my brain just doesn’t work that way.

She tried a few more things. Similar exercises…I was completely lost, I didn’t know what to say, or what was expected, or how to do the exercise. Way, way out of my depth. Not a comfortable place, but she was lovely. And did not make me feel bad about it.

She told me I’m the first patient in 30 years who didn’t have a colour or a shape, that these exercises always opened up emotions around pain. Started a discussion, a conversation, which illuminated ways the person could change the way they think about pain and reduce their emotional response to pain.

In fact the goal was to open up the emotional responses to pain, the negative emotions, fear, anger, catastrophising, and to acknowledge and examine those emotions. And learn healthier ways of managing those feelings.

Ahhh…that explains it. I don’t have any emotions around my pain. It’s just pain.

Still, I felt like I’d failed a test, somehow.

She explained further that this was a method to externalize pain. To separate pain from the person. And a way to reprocess the pain. A way to remove emotions around pain, to reduce fear, and thereby reduce the pain.

Makes sense.

I don’t have emotions around pain. Its just pain.

There is no unresolved trauma. I am not fearful. Of pain, of movement. Therefore, this technique has nothing to offer me. I do not have the symptoms this technique is designed to treat. It does not open emotional doors, because I do not have repressed trauma, shut away somewhere. I have no emotions about my pain. Pain does not make me feel emotions.

It is just pain. A purely physical experience.

Unfortunately, this means that this therapy can’t reduce my pain. My pain is not caused, or even influenced, by psychological or emotional factors.

She agreed.

She told me I didn’t need to see her anymore. She had other things she could try, different approaches, but she now believed me – I am not anxious, depressed or distressed by pain. I am not afraid to move. I do not catastrophise. These therapies will not help me.

I am not that person, and never have been. I may not be managing my pain the way she teaches, but I am self-managing my pain very successfully, in her opinion.

She gave me a clean bill of health, psychologically speaking.

She said I am managing my pain very well, I have found my own methods and strategies, and it would be pointless and wrong to try and change my coping methods. If it were even possible. There would be nothing to be gained. She told me I have done very well, and found my own way.

So there we are.

I was right – my psychology has no impact on my pain. I have excellent self-management and coping skills. And I am not fearful, anxious, depressed or distressed.

Coming from a psychologist who has been working at the top of her field for 30 years.

I must admit, I felt vindicated…after the feeling of ‘failure’ dissipated.

To be clear, she did not make me feel like I failed, that’s all me. I felt like I’d failed.

She was empathetic, and kind, and explained things very clearly. I think she’s quite exceptional, and I’d highly recommend her to people who do are fearful, or have unresolved trauma, or anxious or depressed by pain.

But that’s not me. I am all good. She complimented me, and told me I didn’t need to see her, I was doing just great.

She even ended the session early, so as not to charge me unnecessarily! She really is an amazing therapist, and person.

So that’s brilliant. As I said, I did feel vindicated. I cannot tell you how many doctors, physios, psychologists, even pharmacists have insisted that I must be depressed or anxious or fearful. That I must have mental health issues, because EVERYONE who has chronic pain has mental health issues. EVERYONE!

That’s not true. That is their biases showing.

Maybe “everyone” has psychological factors in the beginning. But not 20 years down the road.

My psychologist confirmed what I believed – I am doing great! Psychologically speaking. My pain is 100% physical.

Happy Days! No more doctors telling me I have a psychological problem. No more trying to explain to doctors that I do not have chronic primary pain, where psychological distress is a large component of pain. NO more having to prove myself, prove that I DO exercise, that I DO work hard, that I am NOT afraid of pain.

No more patronizing reassurance. No more condescending speeches about it being safe to move and hurt does not equal harm.

No more. I have passed the test.

Cleared the bar.

Jumped through that hoop. Yet another hoop.

I felt good. No, great, even. And even glad that I’d gone through the process.

And then yesterday, I saw my GP.

For my four-weekly pain medication appointment.

I told her that I’d seen my neurologist, had more nerve conduction studies, AND I’d seen the pain psychologist, as recommended.

My GP had been very excited by the prospect of my seeing the pain psychologist. She googled her, in her office, when I told her about the referral. My GP read her bio and had been very impressed by her many years of experience and her qualifications. She literally gushed about how wonderful this sounded, and this would mean a ‘break through’ for me.

And now I told my GP I’d seen the psychologist twice, and she didn’t need to see me anymore. The psychologist had told me I am doing great mentally, I have excellent coping skills, and she had nothing more to teach me.

And my GP said

“THAT can’t be right!”

She was annoyed. “Twice?” she barked? What does she mean you don’t have to see her anymore?”

I said, again, the psychologist feels I am doing very well at managing my pain. I have developed my own strategies and they are very successful. She has no concerns about my mental health, or its impact on my pain, and has nothing more to suggest.

In short, my pain is NOT mediated by my emotions. And I am doing everything I can do, and doing it successfully.

My pain is purely physical. There is nothing to modify. Nothing to treat. Nothing to moderate, psychologically speaking.

My pain cannot be reduced with psychological treatments, because my thoughts, feelings, emotions, are not impacting my pain.

My GP said, clearly in disbelief, she would write to the psychologist. Was I SURE the psychologist had discharged me? Because that was very surprising to her…

She was implying I was lying. Giving me a chance to change my story, because she was going to check!

Oh look, she’s treating my life a four year old again. Infantalising. Patronising. Worst of all, the ever-present disbelief.

My GP was off guard, off balance. She had been convinced that my pain is 90% psychological distress. That’s what she’s been taught. Even though she KNOWS I have multiple autoimmune diseases, some of which are known to cause severe pain. She has done what most doctors and physios now do – ignore the pathology because ‘pain is just an output of the brain’.

She was flustered, annoyed even. She recovered quickly, but it was there for a few seconds. All over her face. Finally, she said “Maybe she’s not the psychologist for you. Would you like to try a different psychologist?”.

You have GOT to be kidding.

I calmly said “No, thank you, I don’t think that would be helpful”.

But I was dumbfounded.

Way to snatch defeat from the jaws of victory.

And then I truly felt defeated.

I can NOT win.

I can jump through these hoops. Over and over. Prove I am this, and not that. Prove that I do this, and not that. I can have it sky written in letters 100 feet high…but most doctors and most physios now believe that ALL chronic pain is chronic primary pain. Psychologically based. Brain based. To change the pain, you change the brain. Pathology does not matter. The issue is NEVER in the tissues.

That’s not true of me. It’s not true of MOST people!

Most people have chronic secondary pain, that is, where the pain IS caused by pathology.

I have a pathological disease that is demyelinating my nerves. My muscles no longer work properly; I’m losing the ability to walk…and its also a painful process. My nerves are no longer insulated and sometimes nerve impulses stop dead and I can’t move my legs properly. Other times those nerves are firing pain signals constantly, making my lower legs feel ike they have been doused in petrol and set alight. I am not exaggerating. It is excruciating, and that’s when I’m sitting down. Standing on those feet is pure torture. Again, the pain is there because my nerves are being destroyed, by my own immune system. There is PATHOLOGY.

How can a doctor accept that there is a pathological disease process destroying my nerves, which causes the numbness and paralysis in my muscles…but the pain is separate???

The PAIN is just my brain?

It beggars belief.

It makes NO sense. Not if you take a moment to think about it.

But THIS is what they have been taught.

And they have been taught wrong. They have been taught only HALF the story. The story of chronic primary pain. Its all a strategy to deny people access to opioids. And doctors have been brainwashed with this garbage so that will not prescribe opioids, and they will not feel bad about denying opioids. Denying their patients safe and effective pain relief. Because they have been taught that opioids don’t work on ‘chronic pain’. Because it’s a brain issue. A nervous system issue. Not a pathology issue.

The lies that have been told. The myths that have been sold. Perpetuated.

And people like me suffer.

I can NOT win.

No matter what I do to prove that I am mentally sound, I have excellent self-management skills, I am motivated and determined and well educated on pain science. I have an internal locus of control. I am independent and cannot STAND relying on others And I certainly do NOT want others to carry my load for me…no matter how disabled I may be…no one will believe me.

My pain is constantly minimized, dismissed, as I am dismissed and demeaned.

I am NOT the anxious, depressed and distressed person, curling up in the big comfy chair, feeling sorry for myself. I have NEVER been that. I found my own ways to cope. I developed my own rules and tools and strategies. I never fell into the patterns that people who have chronic primary pain do. I do not have the maladaptive thoughts, beliefs and behaviors that people with chronic primary pain have.

So those treatments for chronic primary pain are ineffective for my pain. I do not have those symptoms. Those ideas are NOT the cause of my pain. Therefore, the treatments do NOT reduce my pain.

It’s very simple, very logical, but no one will believe me.

No matter what I do.

No matter how many hoops I jump through, they just put up another hoop. Make me do it again. And again. And again.

They have been taught that pain is caused by psychological distress. Therefore, I must have psychological distress.

Nothing I say or do changes the way my GP sees me now. We have no therapeutic alliance. Its not quite adversarial anymore, but her annoyance is bubbling, barely beneath the surface. She clearly resents writing opioid scripts. She does not believe opioids are the right treatment for pain – psychological treatment is. NO matter what I say. No matter how I prove to her, this is not true.

And NONE of this is my fault.

My GP is wrong.

My psychologist is right.

But it doesn’t matter.

I can. NOT. Win.