Taking away my opioid pain relief is not only medically endorsed torture, it is taking away my ability to access treatment for my severe, late-diagnosed, long-standing disease, CIDP.

I have been very sick lately.  Why?  Because I missed my fortnightly IVIG infusion.  This infusion is very important, it treats my severe, long standing, late-diagnosed chronic inflammatory demyelinating polyneuropathy (CIDP).

This is the worst pain that I experience.  It is constant and severe, neuropathic and nociceptive pain.  It is caused by the demyelination of my nerves, and the consequent spasming of my muscles.  Again, it is constant, severe, chronic pain.

It is secondary pain.  Secondary to another disease, in this case CIDP.  Having been in pain for almost 20 years, I have addressed all the psychosocial aspects of pain. I have modified all the modifiable features of my pain.

The only thing that reduces my pain, enough so that I can function for an average for four hours a day, is opioids. Oxycodone, to be precise.

My pain management doctor is force tapering me.

She has no medical reason to do this.  NONE. She is misinformed and following outdated guidelines.

But last time I checked guideless were….guidelines.

NOT hard and fast rules!

As a doctor, she is supposed to provide individualised care. She is supposed to use her clinical judgement, not just follow a checklist.  She is to improve my life, not destroy it.

But she has all the power and I have none.

I tried a day without pain medication a few weeks ago and it was unbearable. I lasted 26 hours before I caved and took the pain medication.

Two weeks ago, I saw my GP. And she berated me for abandoning the taper.  She insisted I try again.

So, I did.

I saw her Friday.  I forgot on Saturday and took my normal dose.  Sunday, I took the reduced, taper dose.

Sunday was unbearable.

Monday was unbearable.

I woke up Tuesday, unable to walk, let alone drive. I go every second Tuesday.  I called the infusion centre to let them know that I could not drive, and I could not sit in the infusion chair for four hours, even if I had transport.

They were very kind, empathetic and compassionate. At least two nurses there are openly outraged that this is happening to me. The doctor there is wonderful, but he can’t say much about the taper, but he is…perplexed, shall we say. At the treatment plan that is clearly making my life harder and ruining my functional life.   He is watching me deteriorate and he askes me why my pain doctor is doing this.  I told him ‘Guidelines’.  He shook his head but said nothing.

That Tuesday, after being unable to attend my infusion, I was so angry and fed up and unable to cope with the pain anymore that I took my normal dose. Tuesday was still agonising.

Wednesday, I took my normal dose, but it was not enough to cut it.  I was in terrible pain all day.

Thursday, I stated to feel a reduction in pain. Once pain gets out of control like that, its impossible to get it back under control with your ‘usual’ dose. So, the great irony here is that I wound up using MORE pain medications because of this asinine forced taper. To get my pain back under control.

But the other thing I realised is how much the IVIG infusion does for my other symptoms. The fatigue.  The dizziness on standing. The muscles weakness.  The general feeling of being sick…malaise? I don’t know if that’s the right medical word.

Feeling like you have the flu, all the time.  Aches and pains, sure. Severe neuropathic pain, sure. But the fatigue was unreal. The heaviness in my legs…I could barely lift them.  I needed a wheelchair, even in the house.   And my house is not set up for the wheelchair, because mostly I can get by with a walker in the house.

I spent most of the week in bed anyway, not just because of pain but because I was too weak and too sick to do anything.

My life is slipping away from me. Because this doctor is not only condemning me to constant, severe pain.  Pain that NO ONE can live a functional life with.  But also, she is preventing me from accessing treatment for my DISEASE.  She is preventing me from having any chance of remission or even slowing progression.

She is killing me. Plain and simple.

I’m sure most people will not be happy with that characterisation, but what would YOU call it?

She is killing me slowly and painfully. She is torturing me to death.

Again, my pain is not functional. It is not psychosomatic. It is not psychosocial. It is not primary. It is NOT non-specific.

It is pathological pain.

There is known disease process going on. Biopsy proven nerve damage, demyelination and remyelination, naked axons and axonal degeneration.  This is permanent, because four neurologists couldn’t read an MRI and ignored a lumbar puncture.  I have no ankle reflexes, which is impossible to fake, in case you think my biopsy was faked somehow.  And I have lost a lot of muscle mass.

I have severe disease. It is VERY painful.

The four neurologists who dismissed me as a neurotic or hysterical woman, and called it ‘functional’ ruined my life when they failed to diagnose my disease. Because of THEM, I live with constant, severe, pain and I live with severe disabling weakness.  IF they’d diagnosed me early, I would have had a chance at treatment, at remission. But no.  They were lazy and decided it was ‘functional’.  Thereby condemning me to a lifetime of pain and disability.

You could say my disease and disability are iatrogenic, because of doctor failure.   Four of them.

Now, insult to injury, pain management doctors refuse to treat the pain that severe, late-diagnose disease causes.

Just take a moment to consider just how FAR doctors have let me down. How badly they have failed me.

Ten years ago, presenting with severe disease, I would have been given empathy support and PAIN RELIEF.

Now? I am given pain science education which obviously does nothing for pathological disease.

I am given psychological treatments for pathological disease.

I am given the eye rolls, because ‘it can’t be that bad’.

I am given nothing.  No empathy, no compassion, no pain relief.

I am given nothing.

No one can argue that this taper is for my benefit.

This is happening to people all around Australia, every day.

Help us STOP THE FORCED TAPERS!

Pain Patient Advocacy Australia.

The FPM and the RACGP are using FLAWED AND OUTDATED opioid prescribing guidelines. HELP US UPDATE THE GUIDELINES AND STOP THE MEDICALLY SANCTIONED TORTURE OF PEOPLE LIVING WITH PAINFUL, PROGRESSIVE, INCURABLE DISEASE!