Brutal, Cruel and inhumane – when doctors refuse to treat severe chronic secondary pain

Living with constant, severe, disabling pain is a devastating lot in life to be given. But when safe, effective pain relief is available but being withheld, it becomes wilful torture by the medical p

Just a few important notes that all people who do not live with severe, disabling pain need to read, understand AND believe.

I have been talking about my sural nerve biopsy, and how it became infected for the last few weeks. Before I had the procedure, I was told this is a very painful procedure. I was warned beforehand that it would hurt a lot, and to prepare myself for that.  It would be a large and deep incision and 5cm of nerve was going to be harvested.  It was not a little punch biopsy or similar, as I had originally envisioned. 

The muscles biopsy was same; I was warned it would be very painful. A 1cm cube of muscle would be removed from my left thigh.  These are invasive procedures, small surgeries. They would hurt.

I was offered opioid pain medications (oxycodone) for the pain; I declined because I already have oxycodone at home.  I was surprised that opioids were offered so freely, but it demonstrated that the medical staff really did believe that this would be a very painful procedure and they wanted to manage that (acute) pain. 

After the procedure, once the aesthetic had worn off, the sural nerve site was sore.  It quickly became infected and much more sore.

Here’s the very important part to understand and remember:

The sural nerve biopsy wound was NOT as sore as my lumbar spine pain, my rheumatoid arthritis pain, OR my peripheral neuropathy pain.

The muscle biopsy site was barely sore at all. Minor sting, I barely noticed it. I would not even classify it as ‘pain’. It was ‘discomfort’.  Occasionally annoying.

Another thing that people who do NOT live with severe, disabling pain need to learn, know and understand:  A person only feels the worst pain.  Therefore, given my severe, disabling chronic pain from arthritis and neuropathy, I barely felt the muscle biopsy, and only felt the sural nerve biopsy when it was at its grossly infected worst.

The discomfort from the muscle biopsy was not even on the same planet as the bone, arthritis or neuropathic pain I experience daily.

I am making this point because over recent years pain researchers, some doctors and even politicians, have made a concerted effort to entrench the idea that ‘chronic pain’ is NOT severe, is NEVER severe. And that people who live with ‘chronic pain’ have a low pain tolerance. They don’t put it on those exact words necessarily, but it is the meaning they convey.   There are many articles, podcasts, webinars and YouTubes where pain researchers talk of a ‘hypersensitive pain system’, or an ‘over sensitised nervous system’ or a ‘lowered pain tolerance’.  And THAT is the cause of the ‘chronic pain’. 

Except that’s rubbish. Not true.

It may be true of some people with chronic primary pain, I don’t know. I don’t have chronic primary pain.

I have chronic secondary pain.  My pain is due to pathology, not psychology.

My pain IS severe.  It is constant, it is at least the intensity of post-op pain.  Every, single, day.  Without medication, it is an ‘8’ out of ’10’, or above.  Without medication, it is unbearable.

Here’s what you need to know, understand and believe.

I do NOT have a low pain tolerance.

I do NOT have an over sensitised nervous system.

I do NOT have a hypersensitive pain system.

I do NOT have nociplastic pain.

I have several diseases which cause nociceptive and neuropathic pain. There is underlying pathology.  Biology. Structural damage.  Disease. Damage. Inflammation.  Physical pain.  This pain is identical to acute pain, but it happens every day.

I do NOT have psychosocial pain.

My pain is the same as cancer pain, but it is caused by a different disease.  There is NO difference between cancer pain and non-cancer chronic secondary pain.  None.  There should be NO distinction between the two because they are the SAME kind of pain.  Why should the pain of one disease be treated, but other diseases not?  It makes no sense.  Its pure bias.

Because my pain is constant and severe, I am used to severe pain.  I live with severe pain every, single, day.

Therefore, what other people regard as ‘very painful’ tends to NOT be very painful for me.  It tends to be similar or less painful than the pain I experience every day due to disease.

This is ironic, because I am constantly accused of having a low pain tolerance.  This really pisses me off.

The opposite is true. I’ve been told by a few surgeons, doctors, and nurses, that my pain tolerance is very high.  They have been very impressed with the speed of my recoveries from painful surgeries.  

The reason I recover far more quickly than average is that I am NOT afraid of pain. 

I am used to it. I do not lie in bed worrying that moving will hurt.  Lying in bed hurts just as much as moving.  So I move. I do my physio. I do my exercises. I get up and work.  And I recover from surgery and injury in record time.  And doctors and nurses are amazed and happily surprised and often say things like “I wish all my patients were like you!”. Meaning they wished that all their patients would get up and get moving after surgery.

It very much offends me when people automatically ASSUME I have a low pain tolerance.  And 90% of medical professionals, be that doctors or allied health professionals, DO assume I have a low pain tolerance. 

And they start giving me pain education and wasting my time and money.

Of course, some people reading this will not believe me. That’s fine.  People’s refusal to believe does not alter the truth.  I am not saying all of this to boast or brag about my ‘pain tolerance’.  But, please do NOT miss the point.

The point is that some chronic secondary pain IS severe.

The point is my daily, chronic pain IS severe. 

It is at least as severe as recovery from a painful surgery, for example an open hysterectomy or a multilevel spinal fusion, both of which I have experienced.  

Imagine waking up every day feeling like you had a spinal fusion yesterday.  Just stop and think about that for a moment.  Really think about it. Every, single day.  That pain is there on waking. That pain is there during the night. That pain invades my dreams, becomes part of them, until it ultimately wakes me. Every. Single. Day.  Just imagine what that is like. What MY life is like.

Could you live that life?  Would you? Do you care that other people are forced to?

My pain will not ‘heal’, like surgery pain.  It is due to diagnosed, incurable, progressive, painful disease.  Incurable.  My pain is palliative.  No, that doesn’t mean my disease is fatal. It means my pain cannot be cured, it can only be treated, managed.

Except doctors now refuse to treat my pain. They prefer to leave me suffering severe, disabling pain because they believe opioids are worse than this pain.

You would think that I, and people like me, would receive empathy and compassionate care, because there are very few things worse than living with constant, severe pain. But that’s not the case. I get gaslit and victim-blamed and told to exercise more.  Learn to meditate, see a psychologist, learn about pain neurobiology.

Doctors dole out the treatments for chronic primary pain forgetting the pathological component of chronic secondary pain.  The pain-causing component.  It’s like treating a broken leg by telling the person to just not think about it, or to walk it off.  It’s a travesty.  It’s very low-quality medical care.  It is the wrong treatment for the wrong disease. In any other setting it would be negligence.

ANYONE who has an ounce of empathy, or who stopped and thought about it for a moment, would realise its pure cruelty to decide NOT to treat pain, when safe, effective treatments exist.

Yes, its an active decision. A choice that doctors are making. 

To refuse to treat this severe, disabling chronic secondary pain is nothing short of medically sanctioned torture.

People need to know this, understand this, believe this.  Learn it deep down in your guts, as a very prominent pain researcher would say.

It should bother everyone that people are being tortured, their pain left untreated, in this way.  Untreated and undertreated chronic secondary pain is very common now.  It could happen to you, or someone you love.

Also, if you do not believe that I live with constant, severe pain, if you do not believe that is possible for chronic pain to be severe, your biases are showing.   You have been brainwashed to believe that all chronic pain is chronic primary pain, and you may not even be aware of the existence of chronic secondary pain.  It’s very probable you fervently believe something that is NOT true, for which there is NO evidence:  that ALL chronic pain is purely generated by the brain and ALL chronic pain can be cured with education and psychology and exercise.  And you believe this because some charismatic dude telling Dad jokes told you so.  And told you so, over and over, until you believed it.

Unfortunately, because he was so entertaining, in the context of other pain researchers, it didn't take much for you to leave your brain at the door, and you didn't question a word of it. You didn't check the 'facts' he was presenting. You just believed him!

Shame on you!

Please listen. 

The surgeon who performs these biopsies on the regular classifies this pain as severe, severe enough to require opioids to manage.

My daily pain is more severe than this pain. Yet my daily pain is not treated with opioids. 

Any logical person must see the problem there.

I will also add that two days ago I had the infected wound surgically debrided.  It was a brutal procedure; it is a very deep wound, and the surgeon was not gentle, he couldn’t be.  He cut and pulled and prodded as he needed to visualise all the necrotic tissue and remove all traces of infection.  He cut deeply and increased the size of the wound considerably.  It was all done under local anaesthetic and it was fascinating to watch. 

Looking at it, it was hard to imagine that the stitches would hold, and in fact he told me they likely will not hold. I have about a 50/50 chance of the repair staying together.  But if it holds, it’s a huge win.  Because if it splits open and ulcerates again, it will be a chronic wound that will take years, not months, to heal.  If ever.

This wound may never heal.  It’s a serious, chronic wound. 

Far more serious than the first five doctors realised.  But yesterday’s doctor was a senior registrar plastic surgeon.  In short, this is his speciality, he knows best.  This wound may never heal because I am immunocompromised, because it is in a hard to heal location, because it is a deep and large wound. He needed me to prepare for a very, very long haul.  And a lot of pain.

He was happy to prescribe opioids, because this is a very painful wound. 

Its ironic.  For my acute injuries, opioids are handed to me without question.  But for my chronic secondary pain, which is more severe, opioids are NOT considered appropriate. I have been force-tapered to a low dose of opioids which no longer manages my pain.  And I am treated like a naughty child, a malingerer, a timid weakling, or an addict, depending on the doctor.

My chronic pain is nociceptive pain, just as my acute wound is.  It is the SAME kind of pain…pain caused by tissue damage.   

My chronic pain is acute pain that happens every day. 

Now let’s assume the worst-case scenario. The 50% chance that my wound splits back open and ulcerates again. It will then be a chronic wound, and it will be very painful, every day. Wounds don’t tend to fluctuate much, they certainly don’t ‘flare’ and remit.  It will be constant pain from a large, open wound.  It will then cause chronic secondary pain.  Obviously, it will be a huge infection risk and have a massive impact on my day-to-day life.  But the predominant problem that people who have chronic wounds complain of is…PAIN.

That pain is treated with opioids when its acute.  Because a large, open wound is obviously very painful.

But.

What happens when that wound is chronic?

At what point will it be a chronic wound, causing ‘chronic pain’?  And at what point will opioids be no longer be indicated?

Will the doctors be happy for me to have opioids for 2 months and 30 days, but then suddenly, on day 31, opioids will be deemed ‘not effective’ for the pain? 

Will I suddenly be at risk of addiction? Overdose?

Will the doctors declare, on day 31, that they will no longer prescribe because opioids don’t work for chronic pain?

At WHAT point, will the opioids be withheld, even though there is still a wide open, gaping, painful wound?  With visible skin, and muscle layers, connective tissue open for all the world to see?  Clearly very painful.  

At which appointment will they deem my wound to have flipped over into the ‘chronic pain’ category say ‘you can’t have opioids anymore because we don’t give opioids for chronic pain?”

Think about that irony for a moment.  Think about how ridiculous our current classifications of 'chronic pain' truly are. Think about it seriously.   Think about how ludicrous this scenario is. 

At what point will they suggest I mediate and learn pain science and see a psychologist?  They can’t recommend exercise; I’m not allowed to exercise with a gaping open wound.

At what point, will the doctors stop treating the pain of this wound because it is now ‘chronic pain’?

I can’t wait to find out.

Refusing to treat severe, chronic secondary pain IS medically sanctioned torture. 

It is Brutal.  It is Cruel.  It is Inhumane.