RA Blog Week 18 – The Medicine

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It’s RA blog week again, and I’ve committed to blogging as much as possible.  I haven’ t been able to blog much lately, because there has just been too much going on, ironically exactly the kinds of things I want to blog about. But time or lack of it, and my physical health are barriers that I haven’t been able to surmount.   So I’m already a day late, but yesterday’s prompt was

The Medicine – Patients with autoimmune disease often are not treated well by Doctors and Pharmacists when we ask for or receive prescription pain medicine.

As any regular readers of this blog will know, I take opioid pain medication daily, and have done for around 6 years.  My pain medications are an essential part of my treatment plan, because my pain is severe and it’s always there.  Every. Single. Day.  And it always will be.  So here goes…

Pain medication. Doctors are gripped by the “opioid crisis” and are not keen to prescribe strong pain medications, or opioids, for anything other than those with terminal cancer.  They use a lack of studies showing that opioids are effective for chronic pain as proof that opioids are NOT effective for chronic pain.  There is a very strong campaign for doctors to never prescribe opioids, and many doctors now have signs up in their practices that bluntly say that opioids will NOT be prescribed.

This is malpractice at worst and lazy doctoring at best.  For the right patient, opioids are both safe and effective when taken as prescribed.  Refusing to help a person who is in severe pain is cruelty and against every tenet doctors are sworn to uphold.

Oxycodone is my pain medication of choice. And when I say ‘”choice” its not my choice to need pain medications, strong opioids, but it’s the reality of my disease.  I live in perma-flare, which few people understand.  Those who have heard of rheumatoid arthritis tend to think of flares and remits. Lesser known is disease that is always ‘on’.  I never have a day without pain, its only the degree that changes. And it changes between needing 10mg of slow release oxycodone in the morning (and 10mg of immediate release to get me moving) and 30mg of slow release oxycodone.  Most days I take 20mg.

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Obviously, I take the lowest dose possible that will allow me some function and I am very skilled in listening to my body and medicating appropriately.  I am not addicted, I am not even physically dependent. I have stopped my pain medications on several occasions, usually not by choice, and I do not experience withdrawal, only severe, unbearable pain.  I do not experience euphoria or a ‘high’ from the medication, what I experience is relief that the pain is less.  Not gone, less.  I would give anything for my pain to be taken away, but that is unrealistic and a pipe dream.  The damage done to my body by various disease has taken its toll, and I need to accept the pain, and live well with the pain, not spend my life trying to chase a cure or a pain free life.  I do, however, strongly believe I have a right to the best pain relief available, and for me that means opioids.

It’s important to mention that I don’t just want opioids, and I don’t consider them a ‘cure-all’.  I don’t expect to ever be pain free.   I use all kinds of other therapies, including heat and cold packs, simple analgesics, nsaids, meditation, steroid injections, radiofrequency ablations, surgery, and CBT.  I’ve also tried acupuncture but it didn’t help, reiki, and massage.  I was forced to try several anti-depressants and gapapentinoids, both of which gave me horrific side effects.  For me gabapentinoids in particular are far more dangerous than opioids.  They are also subject to abuse, but doctors still prescribe them freely.  I exercise daily, be it a low impact group class or a few basic stretches. I move, no matter what.  Moving is essential to maintaining mobility, strength and flexibility, and living longer.

But without opioids, I can’t move at all. Opioid pain medication is the linchpin that allows me to use all the other pain therapies.  It is not exaggerating to say that opioid medications allow me to live, rather than just exist.

Despite this, the stigma remains.  I still get a lecture from every new doctor (and I have a lot of them) about the danger of opioids.  Despite being a compliant, intelligent, well informed patient, who has always taken my medication as prescribed, and never abused it.

Rheumatoid arthritis is not my only painful condition. My RA pain varies from day to day, most of my joints are affected.  My hands, feet, knees, hips, shoulders, cervical and lumber spine flare daily.  Full body megaflares are what I call it when my ribs, jaw and elbows decide to join the party.  On those days, there is nothing that will help the pain.  Most days my pain feels like broken bones, only these “breaks” will never heal.

The worst pain I experience is my lumbar spine pain, which truly feels like I have a knife lodged in my spine, being twisted all day long.  I also have compressed nerves, shooting sciatic pain, and I have numbness and painful pins and needles down my left side which is likely permanent.  It happens on the right as well, but it tends to be temporary, lasting a few days at a time before my spine shifts and the pressure is released.  My left calf muscle is permanently paralysed, due to the compressed nerve. If I touch my foot I get electric shock pain, but it only lasts while I am being touched.

I also have daily abdominal pain, which is severe. It is likely related to my eosinophilic esophagitis and multiple food allergies (not intolerances).  The latest theory on the cause is internal angioedema.  It ranges from a dull ache, to double-you-over-can’t-breathe pain, and it happens whenever I eat anything.  There are no particular food triggers, I live on a very restricted diet.  No food is truly safe, and I eat very little, as the pain may be mild or it may be severe, but I have no way to know.  It’s just safer not to eat much.  I have needed to go to the ER to get IV morphine to deal with this pain many times.

I consider pain medication to be just like my other medications, I need it to manage my conditions.  I don’t see why there’s such a stigma attached to opioids, but clearly there is.  This stigma is perpetuated mostly by ignorant people who have no idea what real pain is like, who have never needed strong pain medications, and have no understanding of addiction, dependence or the way opioids work in the body, yet they want to take them away from me.  They do not understand that what they are doing is incredibly cruel and would condemn me to a life of daily agony.  Thanks to these people, doctors included, I not only have to live with ongoing, constant pain, but with judgement and stigma.  I have been called an addict, and told I’m a weak person for using these medications.  I have been refused treatment and treated like dirt.  I wish that these people could all live in my body for just one week and see how they would cope.  I’m pretty sure they would reach for the medications too.

Without pain meds my life would not be worth living.  The pain would be unbearable. It’s fairly unbearable WITH opioids, because contrary to popular belief, opioids don’t take away all the pain, they merely take the edge off.  But they are the difference between spending my life in bed in a foetal position or getting out of bed and managing basic self-care. It’s the difference between agony, and being able to stretch, walk, and do light resistance training.  It is the difference between having a life, and not.

But the stigma remains. Even doctors believe the hype from the addiction lobby groups, but the truth is only a very tiny minority of pain patients become addicted to opioids.  And the overdose deaths in Australia are nowhere near the numbers in the US, yet the hysteria here is just as loud.

People are now being denied pain medications and told to “tough it out” or have a cup of concrete.

Personally, I have been mistreated by doctors and by the people closest to me, because of their mistaken beliefs around opioids.

Last year I needed a total hysterectomy. My surgeon and anesthetist did not do their due diligence and failed to understand both my pain medications and my steroid use.  I suffered a post op bleed that almost killed m.eIt was not detected because the nurses thought I was a pain medication seeker.  I was in agony for five days, in hospital.  I was given no pain relief.  My sister had to arrange an emergency transfer to another hospital, where they discovered I’d lost almost half my blood and they arranged a life-saving transfusion.  And they treated my pain.  This happened as a direct result of the doctors and nurses at the first hospital not understanding opioids and of the nurses ignoring my cries for help and deeming me a drug seeker.  They were negligent and unbelievably cruel.  I have PTSD and I will never have surgery again, unless it is emergency or life-saving surgery.  Which means that some pain-relieving options are now off the table.

My closest friends dropped in to my house one day, to find me semi-conscious and unable to do anything but sleep on the couch.  I have adrenal insufficiency, which they know, and I was in adrenal crisis.  They should have taken me to hospital immediately.  Instead, they left in disgust, later telling me it was clear I’d “taken too many pain medications and was under the influence”.   So, they left me there.  I could have died, because they thought I was a pathetic drug addict.  Fact is, if I HAD taken too many pain medications, they should still have taken me to hospital.  But they left me to “sleep it off” because they were so disgusted by my opioid use, by me.  Luckily my kids came home and called an ambulance.  Those people are no longer my friends.

I recently moved to a new suburb, and my GP is now a 15-20 minute drive away.  Most days this is too far for me to drive, and too expensive to get a cab.  I tried to find a doctor in my new area. I saw 6 GPs, all refused to take me on as a patient. All treated me like an addict, a drug seeker.  One was so incredibly rude her license should be taken away.  I saw her when I first woke up with the nerve compression in my spine. I was walking on crutches and had to beg her for an MRI.  She lectured me, despite the fact that I wasn’t asking for pain medication.  Later, when she saw the results of my MRI she phoned and apologised and almost begged me to come back in for follow up treatment. I refused.  I asked my local online chronic illness group and did find a GP close by.  She is so hard to get in to see that I am still travelling the 15 minutes to my old GP. It’s easier than dealing with the stigma.

I have more stories, but you get the idea. I am now committed to formal advocacy work, to get the other story out there. The intractable pain patient’s story.  To demand treatment, to demand the research be done, to demand respect and human rights for those of us unlucky enough to suffer from painful diseases.  To educate the public and to erase the stigma and to give those of us who live in pain some relief and quality of life.

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5 COMMENTS

    • Thanks Lene. I think its important too. So many people see the issue in black and white – opioids are bad, end of discussion. I really want to tell the other side of the story. Thanks for your support <3

  1. I think doctors are so quick sometimes to say hey, this is OK, look at the symptoms this person is dealing with. I do not mind a doctor changing things (I expect them to do so) but to totally discount the patient experience is criminal

    • Totally agree, Rick. Managing all aspects or our disease, including pain, must be a partnership. Doctors need to listen, and assess each patient individually. Not just make blanket decisions like ‘opiods are not effective for chronic pain’.

  2. Hey! I’m at work browsing your blog from my new iphone!
    Just wanted to say I love reading through your blog and look forward to all your posts!
    Keep up the superb work!

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