Chronic pain – I am sick and disabled and in pain. Not lazy.

TL:DR Learn about REAL chronic pain, from the people who live with it. Not the people who profit from it. We need allies.

I haven’t written much lately, because I am sick.

I am not lazy, I do not lack commitment. Or motivation. Or determination.

I am sick.

I do not choose to write, or work, sporadically. This is an unfair characterization, an unfair criticism. On that is not uncommon for people who live with severe chronic pain. Or significant chronic illness.

We are all judged to be lazy, exaggerating, malingering, drug seeking. None of it is true.

I am sick. And I am disabled.

I am not just a ‘chronic pain patient’. As many like to reduce me to. ‘Chronic pain’ is not my identity. It’s not ‘who’ I am.

However, pain does dictate what I can and cannot do. Every decision I make is influenced at least, and decided at most, by pain levels. Or rather, how much pain medication I am allowed to utilize.

I do not choose this.

I am sick. I am disabled.

If I did not have pain, I would still be disabled.

I am sick every day. I never feel ‘good’ in the way that healthy people feel good. I am always fatigued, weak, and in pain. And I sure as heck do not choose that. No one would.

We, people like me, need allies. We need people to help us. Because we are too unwell to put 40 hours a week into advocacy and awareness raising. We don’t have that kind of time.

We need people who have less pain, are less sick, and people who are healthy to fight for us.

Because helping people who live with painful, progressive, incurable disease should be a given. Helping people who have experienced severe physical trauma and injuries should be a given. People should feel empathy for the ill and infirm. For the injured and traumatized.

Societies are judged on how they treat their weakest members.

By this standard, our society is not doing well.

To help, first, you have to understand.

To understand, first you must listen. When you understand, you must also believe. You must trust that what we are saying is true.

You cannot be that doctor who knows better. Who snap judges the woman as she walks into the consult room. Limping, dressed in old clothes, hair unstyled and limp. Clearly a hysterical woman with psychological issues.

Its doctors like THAT who misjudged me, and left my serious, rare, neurological disease undiagnosed. And because of those four doctors, four neurologists who judged me, I now must live with constant, severe, neuropathic pain every second for the rest of my life.

Insult to injury is that no doctor wants to prescribe pain medication to allow me to manage that pain. Make that pain bearable. Make my life functional.

Had the first neurologist, or even the second neurologist, done their job, and diagnosed my disease over ten years ago, I would have had a chance of remission. Or even reversing the damage. Now? Not much hope of that. I’ll be lucky if the disease is slowed down a tad.

People who have no pain cannot understand what it is to live with constant, severe, pain.

I don’t’ care if you’re a ‘carer’ for someone in pain. You do NOT UNDERSTAND. YOU DO NOT KNOW WHAT IT IS LIKE TO LIVE WITH CONSTANT, SEVERE, PAIN. NEVER, EVER, SAY YOU DO.

People who live with mild or moderate pain cannot understand what it is to live with constant, severe, pain.

Everyone can show empathy and compassion and kindness, however. IF they choose to.

I don’t receive a lot of empathy, kindness or compassion. I receive a lot of judgement. I receive a lot of trolling. And recently, I have been stalked by someone who has taken a very sick dislike to me.

They stalked my socials for more than six months. We had ONE conversation. And for six months they followed me, looking for opportunities to attack and discredit me.

Yes, they made me look bad. Because I fought back. But they made themselves look worse. And they outed themselves. They are now blocked on every channel.

It’s not the first time.

People like that scare me. I’ve had a stalker, in the past, show up at my door. It’s very frightening.

There are a lot of bad people in the world.

Although, recently, when I hit crisis, hit my breaking point with pain and forced opioid tapers, several very kind, very empathetic and compassionate people reached out to me. Most were physiotherapists. I cannot tell you how much their support, their kindness, at that time, meant to me. I will never forget.

These are some of the best people I have ever had the privilege to meet, to chat to. Some don’t agree with my opioid use, and my opioid advocacy. But they still reached out to help me. I am so very grateful for that.

They are truly compassionate professionals, genuinely in the business because they want to help. It was incredibly heartening to receive that kindness.

It’s rare.

Many people still don’t believe my various illnesses are real. As I said, I went undiagnosed for over a decade because four neurologists decided I was overreacting, just a hysterical woman.

Turned out I have a very serious disease. It took neurologist number FIVE, and ten years, to get that diagnoses.

That should never happen.

Instead, it’s very common. Women are very often ignored, dismissed, accused of exaggerating or being hysterical.

I will now live with constant, severe, neuropathic pain for the rest of my life, because those four neurologists judged me wrongly.

That’s a hell of a price for me to pay for their incompetence. Their arrogance.

And they don’t even know it.

The disease is CIDP and it causes severe pain. I also have RA, which is also extremely painful at times. But it flares and remits, I always have joint pain, but it’s only severe a few days a week.

I have endometriosis, and adenomyosis, which also cause pain, but those are minor league pains compared to CIDP and RA pain.

I also have a rare bone disease; my bones are extremely dense. Six to seven times denser than a normal person’s. Mostly doctors have no idea what this means, as if often the case with rare diseases. I have a few blood abnormalities, slightly increased risk of some blood cancers, and I have a lot of early onset osteoarthritis. Which is very different, and very separate, from the inflammatory arthritis.

My spine is most affected, and it is severely affected. I have spondylosis, stenosis, spondylolisthesis, facet joint arthritis…all the usual spinal stuff. I regularly have herniated disks; they generally heal on their own.

I had cauda equina syndrome, with severe neurological deficits. My tibial nerve had been compressed to the point of paralysis, and it was left that way for two years because I could not afford the spinal fusion surgery I needed. I eventually had that surgery, three levels fused from L3 to S1. It cost me $12,000 out of pocket. That’s WITH top private health insurance.

I worked hard at physio rehab and got most of my left leg function back.

I do NOT have ‘non-specific back pain’. My back and leg pain is pathological pain caused by a pathological bone disease.

My back pain is not just an output of my brain.

My back pain is nociceptive pain. My leg pain is neuropathic pain. I do not have nociplastic pain.

Then there are the other diseases:

Eosinophilic esophagitis means I can’t eat most foods. They get stuck in my throat, impacted, and the esophageal spasms are horrifically painful. I follow a very restrictive diet, a very limited set of foods, to avoid those food impactions. I can only eat very small quantities of food, otherwise I will either throw it back up, or it will become impacted in my esophagus. It’s too risky to eat out or eat fast food. Though I do try occasionally. I eat baby sized meals and have done for a decade or more. A meal consists of four or five mouthfuls.

I lived on pureed soups for several months, and I did an elimination diet for more than a year that meant I was eating sweet potato, potato, some green veg, chicken and apples. Those were the only foods that were ‘safe’.

Food is purely nutrition for me, not any kind of pleasure.

I have abundant ‘willpower’. I am motivated and determined. If I decide I am going to do something, I will do it. Unless I physically cannot.

I have a pituitary tumour. Therefore, my hormones are all messed up. That’s why I am obese. Certainly not because I eat too much – see ‘eosinophilic esophagitis’ above.

I have adrenal insufficiency. NO, not adrenal fatigue.

ADDRENAL FATIGUE IS NOT A REAL DISEASE!

Please do not confuse the two.

One is pseudoscience, designed to fleece tired women of their hard-earned cash. The other is a dangerous, potentially life-threatening disease that is extremely misunderstood.

I have the second one. Simple bugs, a cold, some gastro, can quickly turn into something serious for me. My body does not make cortisol at all. Therefore, when I get sick, or injured, or have surgery, or am under a lot of stress, I need to take extra oral corticosteroids.

A healthy body makes extra cortisol to cope with stressors; my body can’t do that. Without steroids, I will go into an adrenal crisis and this can be life threatening. I have spent many a day in the ED receiving fluids and steroids to recover from an adrenal crisis. I am recovering from one now.

I am deaf in my left ear. Probably because of the bone tumour in my skull. It’s benign and slow growing, but it presses on nerves. I have constant tinnitus. It’s annoying; some days louder than others.

I am legally blind in my left eye. My right eye is getting worse, good chance I won’t be able to drive next time I go for an eye test. I have to go every year, around my birthday. To keep my driver’s license. One of these years I’m not going to pass the test.

It could happen this year, or if I’m lucky, next.

Happy birthday! We’re taking your driver’s license! Yay!

But.

What will be will be. There’s no use worrying about things that haven’t happened yet. If I lose my license, I will be even less able to leave the house. I will be even more isolated. But I will adapt.

I also have Hashimoto’s thyroiditis, or hypothyroidism. And PCOS. Oh, and ankylosing spondylitis, another form of inflammatory arthritis. These are minor league issues…hypothyroidism means taking a daily tablet. PCOS was only problematic when I wanted to conceive, I take metformin to regulate my blood sugar. And ankylosing spondylitis is another form or arthritis, but I tend to group all my inflammatory arthritis diagnoses together as one disease, rather than several.

Apart from pain, I have muscle spasticity, numbness and paralysis. My muscles are weak because the nerves that control them are being demyelinated. I am losing control of my leg muscles, and my arms are getting worse also. I am very weak.

But NOT because I allowed myself to become deconditioned!

I have a disease that causes muscle weakness! The weakness is caused by the demyelination of my nerves, The destruction of myelin disrupts the transmission of nerve signals, leading to muscle weakness and other symptoms like numbness, tingling and pain.

I am tired of some health care professionals trying to tell me my leg weakness is my own fault. Because I was lazy. Look up CIDP. It’s a disease process. I am on IVIG and prednisone to try and slow down disease progression. I will be starting Rituxan infusions soon. I exercise as much as I can.

I am getting to the point where I need a powered wheelchair, if I am to walk any more than 100 metres of so. I can do a quick grocery run. Sometimes I want to go to the shops, just to get out of the house, and not feel like a big lump of useless. Just to feel human and see the world outside these four walls. But mostly that’s a waste of my energy. Energy that I need to devote to working. Or cleaning house. It’s hard to prioritize ‘getting out of the house’ when I barely have enough function to manage the basics.

My latest blood work shows I am in the stage 3 chronic kidney disease range again. Every so often I drop down to stage 3 kidney disease. So far, I’ve always bounced back up to Stage 2.

Stage 2 is nothing to worry about, but Stage 3 is a bit of a problem.

I’ll need to get my bloodwork checked again in three months, hopefully my kidney function will have improved, and I’ll be fine. Again, no use worrying about things that haven’t happened.

My liver is often dodgy, but its good at the moment. The medication I take for inflammatory arthritis – methotrexate – is liver toxic.

Sometimes it feels like whatever parts of my body autoimmunity or other disease isn’t attacking is being finished off by the medications I have to take to stay alive.

I am grateful I have access to these medications, however.

I have a lot of health issues.

NONE are lifestyle mediated.

I used to be a gym junkie, nutrition nazi, super fit person. I did NOT bring any of this on myself though poor choices. Though people DO love to tell me I did.

People don’t get it.

There is very little empathy. Zero compassion. Even less kindness.

I have very poor quality of life.

All I’m asking for is a better quality of life. Less pain.

Doctors recognise that the spasticity, the tingling, the weakness are all caused by the disease process. And they will treat those symptoms. But not the pain.

They say the pain is caused by my brain, so I must treat the brain, not the body part that hurts. This is ludicrous. And patently wrong. They have been taught pain neuroscience, but they have been taught wrong.

It demonstrates a fundamental misunderstanding of the various types of chronic pain. A fundamental misunderstanding of pain science. Of the neurobiology of pain.

I have chronic secondary pain. This is pathological pain. It is acute pain that happens every day.

I do not have chronic primary pain, which is pain that is generated purely by the brain, where there is NO pathology causing the pain.

Pain science education was developed as a theory to explain pain where there is no pathology to explain the pain. It was NEVER intended as an intervention, or treatment, for pathological pain.

Pain science education has ZERO effect on pain that is generated by pathology.

That’s why pain science education is not used to treat acute pain. And it’s not used to treat cancer pain, either. My pain is just like cancer pain. My pain is exactly like cancer pain, except its caused by a different disease.

Doctors are being taught the wrong thing. And the consequence is they now refuse to treat pain with opioid pain medications.

They have been taught methods to treat mild to moderate chronic primary pain and they are applying those methods and interventions to severe, secondary pain.

That’s like treating a broken femur with a band aid.

I advocate strongly for people like me to have access to whatever pain treatments work. I am not pro-opioid. I am pro pain relief.

In return I often get trolled. Or even stalked. I’m tired of it. I wish I’d stayed anonymous. But people will not listen to someone who’s hiding behind a pseudonym. Then again, few people are listening to me anyway.

It’s not easy being sick.

People generally don’t believe I’m THAT sick, or in THAT much pain. And I can’t argue…it just makes things worse. If people are committed to NOT believing me, then nothing will change that. People will be who they are. And a lot of leaders in the pain space are not particularly kind or empathetic people.

The best people tend to be physiotherapists, in my experience. Offering help, offering support.

When I was in crisis, I also received messages from two doctors. One told me opioids do not work for pain, and I should be ashamed of myself for promoting them. The other told me if doctors are not prescribing, I must be an addict.

Hmmmm.

Very unkind.

They used much harsher language than I just did. They saw a person in crisis and thought that was a good time to attack.

I cannot imagine that they treat their patients with respect, kindness, and compassion, if that’s the way they treat me. I know I am not their patient. But I am A patient. A person who is suffering, due to disease.

And their response was to be nasty, cruel and…wrong.

I am not able to do much work at the moment. I am far too unwell.

My colleagues who live with constant, severe pain also have periods like this. We support each other as much as we can.

But we need support from healthier people.

We need allies.

We need people who live with less severe pain to help.

We need healthy people to help.

We need doctors, and physios and nurses and pharmacists and to unlearn the crock science they’ve been taught. And learn about chronic pain. ALL the types of chronic pain, not just one minority type.

Learn about REAL chronic pain, from the people who live with it.

Not the people who profit from it.

We need allies.