Living with Chronic pain and the opioid crisis (opioid hysteria)

Yesterday I did an interview for ABC news on chronic pain and the opioid crisis.  Even though I am a shy, quiet person, and not at all comfortable on camera, I jumped at the chance because the opioid issue is hugely important to me.

On June 1, 2020, in the middle of a global pandemic, the regulations around opioid prescribing were changed in Australia.  The point of the new regs was to reduce unnecessary prescribing for opioid for chronic pain, a noble goal.

Read that again:  Unnecessary prescribing for chronic pain.

Unnecessary prescribing.  I believe that some people are prescribed opioids unnecessarily or inappropriately, but most people who are taking opioids long term take them because they need them.  Because opioids reduce their pain and improve their quality of life.

Some doctors have interpreted the new regulations as being a directive to force taper ALL their chronic pain patients off opioid pain medications.  No exceptions.

I was one such patient.   

What the regs say, in a nutshell, is that all chronic pain patients need to be reviewed by another doctor to ensure that opioid prescribing is appropriate for that patient.

Perfectly sensible idea. Laudable.  But in practice, some doctors have demanded that the second doctor be a Pain Management specialist doctor.  In many areas the waiting list to see a pain management doctor is a year, or even two years. If there is a pain management doctor at all. 

Some people have to travel for several hours to see the closest pain management specialist.  And for someone living with high impact chronic pain, a few hours in the car is a very big deal.  For some, its not even possible.  Because opioids are schedule 8 medications, it cannot be a telehealth appointment.

Many people were unable to see a pain management doctor, and their current doctor refused to continue to prescribe their opioids pain medications. Some were force-tapered off their medications, others were left high and dry, to go cold-turkey without their opioid pain medications.  If they argued, the doctors refused to treat them anymore, meaning vulnerable, sick people living with chronic pain and often many complex chronic conditions were left without health care. 

Their increase in pain was ignored.  NO other solutions were offered, because there aren’t any; opioids ARE the treatment of last resort. 

I was in this group.  I saw my pain management doctor, who refused to listen to me, It was a five minute conversation, and he told me bluntly ALL his patients were being tapered off. And despite the fact that I was doing everything right (exercising daily, meditating daily, pacing myself through activity and rest) and even running a small business, he told me I would just have to find a way to do all that without my opioid pain medications, as they were “harmful long term”.

He cited “opioid induced hyperagesia” and addiction concerns.  I suffer from neither of those problems.  I dispute that opioid induced hyperagesia is a proven clinical entity.  Despite my arguments, he refused to budge, he agreed to slow my taper down, but insisted that I would be tapered off opioids completely.

I did the only thing I could and went looking for a new GP.  This is no small decision when you have been with your GP for over ten years, and you have a very complex history of multiple chronic illnesses. 

I have found a GP who will take me on, however now everyone is so lucky. This is why the issue means so much to me – people are suffering needlessly. Some are resorting to suicide, because they can’t live with the constant, severe pain that their opioids used to ameliorate.

Some GPs flatly refuse to take on a patient who is taking opioids. There are signs up in clinics that say “No opioids will be prescribed”.  Chronic pain patients who take opioids have been turned into an underclass, untouchables.  No medical care will be given as long as you take those “terrible” opioids.

This is a travesty.  How dare GPs refuse care to a vulnerable, and sick, population? 

How? Because the Australian health department has made their treatment untenable. The Australian Health department is monitoring how many opioid scripts are being written and if they deem that a doctor is over-prescribing  (purely based on numbers, not based on any analysis of the patients involved) then the Health department is sending out threatening letters.  GPs are at risk of having their prescribing rights curtailed, or even their medical license threatened.

This is a huge “big stick” approach that is wholy unnecessary and utterly ridiculous.  But the simple solution for GPs is to not take on patients who are taking opioids, denying them care.  And to force-taper all their patients.  Get rid of the problem. Simple.

Except it’s not simple. Patients are suffering. Patients are dying. 

THAT is why I played against type and put myself on camera to talk about this issue.

And I forgot to say a lot of this. I was nervous, my mind went blank…I hope I got enough of the message across.

But THIS is the point of the post:

I’m sure I looked completely healthy during the interview. 

Infact, I was in a great deal of pain for most of the day.

The journalist and cameraman were amazing people, they were so considerate. They allowed me plenty of rest, and we paced the day. The whole thing took around four hours.  I did a sitdown interview, and we went for a walk, the same route of my daily walk around the pond. 

And after they left, I crashed.  Sheer exhaustion and pain kicked in. I’d been holding myself together on adrenalin and excitement and nerves to actually be talking about this issue. 

The kids came home from work, my daughter made me some food that I was unable to eat.  She helped me get up to bed.  I lay there for hours, in pain, so physically and mentally exhausted, that I couldn’t do anything but stare at the ceiling. 

Its now a week later, I had to drop this post because after the interview I went into full body megaflare.  It took a full THREE days for me to recover from the exertion and the stress.  I just want people to know that. I’m sure I looked perfectly fine on camera, I’m sure it will be hard for people to believe I live with daily, severe, chronic pain.  But it’s the truth.

Three days of bed rest followed the interview.  Only today, one week and one day after the interview, do I feel ‘normal’ and have some energy back. Pain levels are low (for me). 

The interview was absolutely worth it.  I very much hope that I got my message across. And I very much hope that people believe me, believe that I’m in pain, and believe that opioids are NOT the enemy. That for some of us, they are life-saving medications, and they need to remain an option in the pain management toolbox. 

I’m not sure when the interview will air, I will let you know when I do.