Trigger warning: suicidal ideation, severe chronic pain, the gate keepers preventing me from accessing help – the reality of living with severe chroni

Severe pain is a medical emergency.? It does not matter whether that pain is acute or chronic.? Severe pain is an emergency and must be treated as such.

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‘Pain never killed anyone.”

I don’t know who said that first, but it’s often repeated. By ignorant slobs who are lucky enough to have never experienced severe pain, let alone long-term severe pain.

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Very often it’s repeated by doctors, which is appalling.

Because.

Pain does indeed kill people.

Pain can cause heart attacks and strokes.

Pain can, and does, cause suicide.

Pain causes a slow death of despair and immobility, with the gradual health decline caused by a sedentary life of isolation. ?

Pain takes the ability to work, to socialise, to function as a normal human would. ?

Pain takes the ability to live…once you are no longer living, merely existing, physical death will surely follow.

Pain does kill.

Or perhaps I need to be more precise – untreated pain kills.

What I am, and many others like me, are living with is?untreated pain. ?Severe, untreated pain.

Everyone will get to breaking point when they are living with constant, severe pain. Especially when they know that this pain could be treated, easily and effectively, but doctors are refusing to treat.

Because they think pain never killed anyone.

Actually, I don’t believe they have even thought that far.? What they believe is that the Health Department has told them that they must not treat severe pain, if that pain requires an opioid dose of more than 100MME daily, they are not allowed to increase that dose.? That’s 100 milligrams of morphine equivalent.

People who have lived with severe pain and been on opioids for a number of years will have developed tolerance.? And they will require a higher dose.

Tolerance is not a big problem for an experienced prescriber to manage.?

Think about it. Tolerance means you can TOLERATE that medication! Yes, there may be more side effects down the track. Maybe.? I don’t see any studies about that…it’s the fear of overdose that is constantly referred to. But the overdose incidence in people with chronic pain is less than 1%.? So small, its hard to measure.

AND doctors (and politicians) always focus on the side effects of opioids. They NEVER focus on the side effects of severe pain .

Pain kills.

Not only are you condemning patients to a life of torture, a life of torment, but pain will kill eventually. No one can live with constant, severe pain. At some point it will become too much.? At some point they will have had enough and take the only way out left to them.

I am at that point.

Let me tell you what happens when a person gets to this point.

First, the reason I am at this point.

The worst pain I have is from CIDP, neuropathic pain. Severe and unrelenting pain.? Neuropathic pain is the worst pain possible.?

I am being treated with IVIG. MY dose was halved and frequency doubled, in an effort to improve response.

The reverse happened. This dose is now too low to have any effect. Before, at double the dose, every four weeks, I got a good week, two average weeks, and one week of severe, unbearable pain,

I could hang on through that week until the next infusion, because I knew it had an end date. It would be a week, and the next infusion would give me relief. Respite.?

This went on for a few months.

Now, on the lower dose, there is no relief. NO respite. Never.

I get a few hours of partial relief, thanks to my opioid pain medicines.? About four hours of good relief and about six hours of ‘some’ relief.? Where it is not screaming agony, but I am not capable of doing much. The rest of the time, about 14 hours a day, the pain is unbearable agony.

People HATE words like agony. Or Excruciating.

They immediately (internally) roll their eyes, or shake their heads. They KNOW that the pain can’t be THAT bad!? They are annoyed at what they see as exaggeration or hyperbole.

But think about it. REALLY THINK ABOUT IT.

How is a patient to explain to a doctor that the pain truly is torturous??

Can’t use words like ‘excruciating’.? Can’t say its ‘agony’.? Because they’ll get the eye roll.

What are we to say to explain that the pain is indeed unbearable?

How do we get your damn attention?

We can’t.

This is what is happening to me.

I have been on this dose for six weeks, three infusions.? The doctor at the infusion centre repeatedly told me to ‘give it another two weeks’.

Finally, I told him ‘no’. I cannot cope anymore. I need help.

He did not hear me. He did not listen.? He did not contact my neurologist, so I did.

On Thursdays 7th?November. ?First I tried to call. Was left on ‘hold’ for about 30 minutes and then the call was disconnected.? BEFORE I was able to leave my message.

So I went to the website, which has a contact form, which states they will ‘get back to you’ quickly.

I used the contact form to tell them I was in crisis and needed help. I used the words ‘crisis’ and ‘unbearable pain’. ?I stated I was unable to function, unable to work. My business was going under, I begged for HELP.

I received no reply.

I saw my GP on Friday.? I told her how much pain I was in and that I was desperate. She told me she would write to my neurologist. I thanked her, knowing that a message from a GP is much more likely to be actioned than any message from a patient.

On Monday, the receptionist at my GP practice called me to let me know the letter had been sent.? She was kind.?? I was grateful. Especially to my GP, who’d asked the receptionist to call. She wanted me to KNOW it had been done, so that I could hang on.

I heard nothing from my neurologist.?

Finally, yesterday, Thursday 14th, I called again. One week after I’d send the original email, and had tried to call.

The bitch receptionist, Jaya, told me they don’t check those messages from the contact form.

I told her she should change the damn website.

She rudely told me that was not her problem.

I had already told her I was in crisis, in terrible pain, and I needed help.

She had zero empathy and was rude to me.

Yes, I was openly critical of their website and my tone was annoyed.? I was not rude.? I was a person in crisis.? It is her job to help.

She curtly recited the email address and hung up on me.

Is that how a staff member should treat a person in crisis?

No. NO its not.

She should have calmed me down. ??Apologised, because their systems are broken, their website advertises this as the correct way to contact them, but in actuality, they do not read these messages.? And people are getting hurt.?

And she should have actioned my request for help immediately. ?

She should have alerted my doctor that his patient was suicidal and in crisis due to severe pain.? She should have raised the cavalry.

She did not do that.

She did not do anything.

Because now it’s over 24 hours later, and I have heard nothing.

I have gone through another night of torment, with no sleep aside from a few hours of exhausted rest.? A body is eventually so exhausted that it will sleep.? Then, after about two hours, the severe pain breaks through sleep. And you wake.? The body is no longer exhausted, having had two hours of sleep. And so the next four hours of excruciating pain extend before you, until exhaustion forces a little bit of sleep, once again.

The cycle continues through the night.?

I usually get up at 4am because I can not lie there in agony any longer. I get up and try to move. I get up and take pain medication.

But taking my pain medication at 4am means that it will wear off by 10am.?

Would you like every night to be like that?

Would you?

THIS is the truth of severe chronic pain.

Now, I am waiting for my opioids to kick in.

I have been writing this post over the course of the last week. Never able to finish, because I am in too much pain to even write a short post. ?To think clearly. To concentrate long enough to finish it.

I add to it daily.? I have deleted things and added things. It’s probably not very coherent.?

But this is what happens to people in pain.

We are IGNORED.

We are treated like GARBAGE by the receptionist that we beg for help from.

We cannot get through to the person who can help because a receptionist has taken issue with our tone.

The reception is the only way for me to get in touch with my doctor.

I can’t get in touch with my doctor any other way, other than through this person. If she chooses to do nothing, there is nothing I can do.

She is a truly disgusting human being…with her ego being more important to her than another person’s life.

She didn’t like my tone. ?So she refused to pass on my message.

I will send another email today.? Maybe I’ll get lucky, and it will go through to a different person. But she smugly told me all emails come to her. So I doubt it.

Should I suffer because an insufferable bitch provoked me while I was in terrible pain, begging for help?? Because for one moment, while I was in agony, I lost my temper?

Is it OK that she leaves me to suffer, because for once I did not maintain my hyper polite fa?ade?

I am ALWAYS hyper polite. Even when I’m in agony. It’s one of the reasons that people don’t believe I’m in agony. I AM TOO CALM.

So when I am NOT calm, when I am getting emotional, they ignore me as well.?

WHAT IS A PERSON TO DO?

HOW IS A PERSON SUPPOSED TO GET HELP?

There is no way to win.

Anyway, that’s where I am now.

My next infusion is on Tuesday, four days away. Two business days away. The point of all this is I am begging for the next infusion to be put back to the original dose.? At LEAST that way I will get a few weeks’ respite.? The constant, severe, unbearable pain will reduce…for a few weeks.

I need that respite. I need some relief.

That won’t happen.

Because it’s Friday and the infusion is on Tuesday. ?There is not enough time...because bureaucracy.?

But if that bitch had checked her email a week ago, it could have been done.

And no, I do not apologise for calling her a bitch.? What should I call a cold, cruel human being who denies help to a person in crisis?

SHE thinks she’s right, because SHE thinks I was rude.

In her job, she should be aware that people in crisis may behave in ways that she believes are rude.

How does she live with herself. What if last night I had given in to the urge to end the pain?? Would she feel guilt? ?No, she would never even know. Even though she would have been the catalyst, the final straw that killed a person.

How many bitchy medical receptionists, who hung up on a patient in crisis, were the last straw for a person in crisis?

Good question.

Are they ever taught that?

No, they are taught to be hard faced bitches, and gate-keepers. From the difficult patients that they complain about constantly. Their job is SO hard. ??

That’s the first thing that needs to change. ?It’s not about them.

The second is that a message of crisis should be actioned in minutes, not hours, not days, and definitely not weeks.

The third is that is need help. And I have no way to get it.

Addendum…

I forgot to mention: Last week I also called my pain management doctor, she is at the same practice.? The doctor at the infusion centre, last time, prescribed an extra box of oxycodone to ‘get you through the hump’. He acknowledged that the pain was extreme, and I was not coping. This time, however, he did not prescribe extra oxycodone.? I don’t know how long he thought 20 tablets would last.? But less than 14 days, when in severe pain.

I called my pain management doctor to see if she would prescribe extra oxycodone to get me through this period of unmanageable pain.?

I got an ‘emergency’ appointment in TWO WEEKS.

How many emergencies do you know that can wait two weeks?

Still, it’s much better than an appointment in March, which is all Jaya the receptionist would offer me in terms of my neurologist.

I took the pain management appointment. It is now only a week away.

I am going to write to her again and let her know that I need to take extra oxycodone.? OxyContin, to be precise.? The slow-release medication that is supposed to last 12 hours, but only lasts 7 hours. This is a well-known phenomenon, the medication does NOT last 12 hours for some people.? It all depends on your genetics, your biology, which particular enzymes you have metabolizing oxycodone.? Studies have shown this. Doctors are well aware of it. The entire way they measure MME is flawed, because of this, but that’s another post. Next week, if I make it that far.

I need to take more slow release to manage the unbearable nights.? The long, agonizing, dark hours. Just one 20mg tablet of oxycontin (or targin) will get me through the night.? Will reduce the pain so that I can sleep through the worst of it.?

I consider my life at risk, so I am going to do this.

This may have terrible consequences.

She may dismiss me as a patient because I have taken opioids in higher doses than prescribed.?

She may refuse to continue prescribing, because I have taken more medication than prescribed.

I feel I have no choice. I am desperate. I do not want to die.? But I cannot cope with this pain, anymore. I cannot do another night like last night. And the six weeks of nights before that.?

I cannot. Everyone has their breaking point. For me, its seven and a half weeks of agnonising pain.

I will have to hope that she is a decent person and a good doctor and will understand.

I will let you know how that works out.

Addendum 2

Because it is now after opening hours, I called my neurologists rooms.? The receptionist told me they have not received any emails from me.? ?A different receptionist.? And then she told em that my doctor is on leave, and will not be back until the 22ng of November.

The receptionist I spoke to yesterdya, Jaya, KNEW that my doctor was on leave, and would not see my email for another week. She failed to mention that. She failed to do anything that a decent human being would do. I hope she’s feeling very proud of herself. What a decrepit human being.

I told today’s receptionist that I was in crisis and I needed help sooner than that. I cannot wait until the 22nd of November.

She had no answer. She told me to send an email. Which I did. Knowing that no one will read it for a week. At least.

I then called the infusion centre and asked if they could change my dose, back to the way it was, because there is no reason for me to come in the way it is. It’s a waste of a? very valuable resource (IVIG) to give it to me in a dose that is ineffective.

The reception person there said the will get a nurse to call me back.

The infusion centre called me back within ten minutes. ?

I was asking if they could revert the dose, this can’t be done without my neurologists approval.? And no one will get in contact with him because he’s on leave.

Yes, doctors need to take leave. BUT they should have someone covering their patients. That’s why we pay them the big bucks. ?It is NOT OK to leave a patient in crisis for weeks on end, with the promise that he will be back in another week and will look at his emails, IN ORDER OF RECEVING THEM, and will get back to me.

Another doctor at this practice should have been able to handle this. Its not that hard.

I wasn’t going to attend the appointment, waste of time and valuable IVIG. But the nurse said she will talk to the infusion centre doctor and he will review me and try to escalate the situation.? On Tuesday.?

Hes a great doctor, I like him very much.? But he can’t change the dose and it will be another two weeks with no relief.

It has now been seven and a half weeks of unrelenting, severe, pain, and no sleep at night.? That’s enough to drive anyone mad.?

It will be another two weeks, At least, before anything changes.? Last time, the dose change took SIX weeks to happen.?

So it could be another six weeks. That will mean 14 weeks of unrelenting agony.? And only the people at the infusion centre care.? They understand that I am in crisis. They are trying.

They are life savers, because I needed SOMEONE to help. Just someone to show they give a toss!? To show they care.? I needed some empathy, some support, some understanding, some acknowledgement.?

I am going to take a higher dose of opioid. I am taking the extra daily dose of oxycontin, slow release oxycodone.? I am writing an email to my pain management doctor to let her know I am at the end of my rope and I need to do this.? I have no choice.

And I have to hope that she will be OK with it.

This is the real world.

This is what it’s like to live with severe, daily pain.?

This is how impossible it is to get help.

This is how easy it is to fall between the cracks.

Why?

Because most people simply do not care.

Most peope simply do not think that 'severe’ chronic pain exists. THey think all chronic pain is mild or moderate, amplified by psychological problems. This is wrong. Very, very wrong.

Severe pain is a medical emergency.? It does not matter whether that pain is acute or chronic.? Severe pain is an emergency and must be treated as such.

This idea that chronic pain is never severe, that people with chronic pain are just people with poor coping skills, poor self-management skills, and a low pain tolerance needs to die.

There are a huge number of diseases that are incurable, barely treatable, that cause severe, daily pain.?

ONLY CHRONIC PRIMARY PAIN IS A CONDITION OF THE BRAIN.

Chronic secondary pain is acute pain that happens every day.

Chronic secondary pain IS related to tissue damage.

Chronic secondary pain, when severe, is a medical emergency, and should be treated as such.

THIS is why we need peope who have lived experience of severe chronic pain on boards, and positions of power in our chronic pain advocacy org. But we do not. we have allied health professionals who know NOTHING about severe chronic secondary pain. They know only of chronic primary pain and have erased chronic secondary pain from their narrative.

My pain is NOT purely an output of my brian. it is the result of damaged nerves, a damaged nervous system, a patholgoical process, an autommune disease that is attacking and destroying the myelin sheath of my nerves. This is a very painful process, and in addition causes muscle weakness and loss of mobility. CIDP is a horrible disease. It is incurable. Like many other horrible diseases,