I have been waiting on this appointment for a month. It’s the follow-up from my radiofrequency ablation of my right SI joint. The ablation was fantastic, for the week after I felt pure bliss, my pain had been reduced to a solid “7” when it had been and “8 and a half” to “9” most days. You can imagine how good that felt.
But over the following week, the other parts of my spine started hurting more. And the week after that, I was back to “8 and a half to 9” pain every day. Severe pain. Disabling pain. The kind of pain you can’t ignore. The kind of pain that is front and centre in your life, whether you want it to be, or not. Whether you are practising mindfulness, or not. Whether you are doing your physical therapy, or not. Even whether you are taking your opioid pain medications, or not.
The only thing that takes the edge off is opioids. Infact, I can’t do any of the other things in my pain toolbox (exercise, physical therapy, mindfulness, meditation, plain old looking on the bright side) without opioids. They are the essential cornerstone of my pain management.
Ofcourse I’d rather not take opioids, but I firmly believe, and I will fight this point fevervently, that NO ONE who lives with the kind of pain I live with would refuse opioids and just ‘push through’ the pain. It isn’t possible. Only someone with a genuine allergy to opioids would refuse them, and true opioid allergy is rare.
Still though, given the fake “opioid epidemic” that certainly doesn’t exist in Australia, doctors are all very focused on getting people off opioids, often against their will, and often to the patients detriment.
It’s not a good time to be in chronic pain. The levels of empathy shown to chronic pain patients is somewhere just below neo-nazi sympathisers and used car salesmen.
So this is the climate in which I see my pain management doctor. I was buoyant with joy and the initial reduction in pain after the radiofrequency ablation, and then gradually sunk back to daily agony and desperation waiting on this appointment.
He was late. I was early, by ten minutes. This meant that I got to sit on his extraordinarily uncomfortable waiting room chairs for a full 40 minutes. By the 30 minute mark I was close to crying out loud. My rheumatoid arthritis has roared back to life recently, as my corticosteroid dose has been reduced. I’m currently on the equivalent of 7mg of prednisolone, by I’m on hydrocortisone, dosed three times daily. I have multiple flaring and swollen joints – hands, hips, knees, shoulders and feet. Walking is qute difficult, even without the lumbar spine pain, and the nerve impingement which is robbing me of the feeling in my legs.
By the time he invited me in, I was hobbling and even more desperate. I filled him in the radiofrequency ablation results, and he nodded and said “ahhhh”.
He’s not unsympathetic, don’t get me wrong. But he usually says a lot more. Long beat, and then “Are you exercising?”
Oh no. “Yes, I do spin classes 4 days a week. I’m not able to do my Pump classes right now, but spin classes are a regular part of my routine.”
“Good, good” he says. “What about hydrotherapy?”
My heart and mind sinks. Oh-my-effing-goodness-gravy he is NOT REALLY TELLING ME THAT EXERCISE IS HIS PLAN? I tell him I’ve done hydrotherapy in the past, and I really don’t enjoy it. Its time consuming, expensive and I truly hate getting into a swimsuit. Spin classes are much preferred.
He persists. Tells me that my local arthritis not for profit can subsidise the expense. I just have to pay a membership.
Right. Pay a membership to an organisation that does next to nothing for inflammatory arthritis patients, focussing almost wholly on osteoarthritis patients, to do a form of exercise that I despise. Not only that, the pool is a 20 minute drive away. So lets add this up. I have to get changed into swimwear publically, which I refuse to do. Drive 20 minutes. Exercise 30 minutes. Get changed back 20 minutes. Drive home 20 minutes. So that’s an hour and a half out of my day, plus at least an hour’s recovery time. IF I am well enough to drive that far, which most days I am not. That would be my whole day’s energy, gone. So no, I won’t do that. Spin classes cost me 40 minutes. Five minute drive there, 30 minute class, five minute drive home. Half to an hour recovery. Still got time and energy left in the day, most days.
I say “sure, I’ll look into it.” Flat out lie. I don’t lie to doctors often, rarely in fact. But in this case, he needed to prescribe SOMETHING so I just agreed.
Then he asked about my medications, how much targin (slow release oxycodone with naloxone) I was taking. And how much oxynorm (immediate release oxycodone). I told him. He tut-tutted and told me we have to reduce that number. I’m taking too many opioids, I’m on too high a dose. He said he wanted to get rid of the oxynorm, as I shouldn’t need it with the slow release. Only occasional breakthrough.
I told him I do need it, but generally I take it when I need to do something, for example, I take it about an hour before my spin class, so I have the best pain control possible, so that I can exercise hard. He agreed that was a good plan. But still.
I said again that I needed to reduce the spinal pain. And that my hips were unbearable too. That, along with the partial paralysis of my left leg, due to compression of my tibial nerve, now on my right leg I am losing feeling around my knee. It sometimes goes completely numb. And I often get the sensation of bull ants biting my shins. I actually have to pull up my pant legs and prove to myself that there is NOTHING there. It feels so real. Its nerve damage, whether its coming from sciatic nerve compression, or whether it’s a central nervous system thing, I don’t know. My arms also go numb. It used to be only my left side, but now both sides go numb. I literally wake up not being able to feel my arms and hands. And I sleep on my back exclusively, so its not from lying funny and compressing a nerve temporarily. I told him that I am losing the function in both legs, and if it continues I’ll have to use a wheelchair permanently. And my quality of life with CRASH if that happens.
He told me that he would soon be able to offer a radiofreqency ablation for hip nerves. Not yet, but soon. He seemed to think this was good news, but all I heard was “I can’t do anything now.”
He shuffled his notes and started to rise, and I panicked! He can’t possibly be sending me away and providing NO treatment!
He says “Well, I think we should just continue with the Baricitinib, to see if that improves your RA pain, and in the meantime we just sit tight, and take up hydrotherapy.”
“Nooooo!” It was out of my mouth without thinking. “I can’t!”
I could hear the panic in my voice. “I can’t manage like this. The pain is unbearable. I’ve been waiting on this appointment for weeks, I need something!”
All the words just tumbled out, and I sounded to my own ears like I might cry.
He looked a little shocked. And then very uncomfortable and then he blurted out “But what do we do? I don’t know what to do with you.”
And there we have it, folks. The truth about pain management in the age of opioid hysteria.
Advice? Get rid of the opioids. How do we manage the pain? I don’t know. I have no idea what to do with you.
Thanks for that, doc. Twelve years of training, fifteen years of practice, and you don’t know what to do with me.
I get it. I don’t know what to do either. I DO know that you should be referring me to a neurosurgeon. I can’t face surgery, because I have PTSD from a surgeon who very nearly killed me due to her negligence. It is sheer luck that I am alive. I shouldn’t be. I lost 50% of my blood post op, and no one noticed for a week. But now I need surgery or lose the function of my legs. Maybe my bladder and bowel too. I can’t face surgery. I will become paralysed without the surgery. ANY doctor should be referring me for urgent surgery, and urgent trauma counselling. That’s what any decent doctor should do.
But I have seen no less than seven doctors, they all know my history and have seen my MRI. Not ONE has taken the time to talk to me about this, and counsel me to see a neurosurgeon. They all just tell themselves its not their specialty and send me away. Unconscionable, to my mind.
I told him he had to do something. I said “Please” in the weakest, saddest little voice that cracked as I said it.
So he examined me. He poked my spine to find the most painful places. It hurt a lot. But at least he was looking for something he could treat. I can’t believe he was actually going to just send me away with advice to reduce my opioids and start hydrotherapy!
He said he would do some diagnostic injections. Under sedation. He would do the bottom two levels, L4/L5 and L5/S1, inject the facet joints. IF it gives me pain relief, he’d do another radiofrequency ablation at all levels.
I thanked him. Another day in hospital. Another round of sedation. I’m getting used to it again. Being put under. Every time I’m terrified. But sedation is not full anestheia And I need to have this done. I need pain relief.
He was almost apologetic as he said he didn’t realise the pain was that terrible. He said I didn’t look like I was in that much pain, but he believes me. I told him I am a very positive person. I tend to smile a lot. I tend to laugh a lot. Because I want to be happy. I don’t want to spend all my time focusing on pain. Even though the pain is terrible. I said I know it confuses people, including doctors. But that you can NOT tell how much pain someone is in by looking at them. And it was a huge mistake to judge on the basis of behaviour that doesn’t gel with your personal view of what pain looks like.
He agreed. He said he believed he could do the diagnostic injections in two weeks, he would fit me in. He would also do the procedure for with no gap. Meaning I won’t be out of pocket.
I thanked him profusely.
He is a good doctor. He is compassionate. He does believe me. He just doesn’t have the tools to relieve the pain I’m in. Spines are impossible to fix. Surgery just as often makes them worse as makes them better. It’s a total crap shoot. But its utterly disabling to have an eroded, degenerated spine.
So what now?
I wait. I am booked in in two weeks.
But I need to go back to my neurosurgeon. I AM losing the function of my legs. I have 100% weakness in my lower left leg. I can’t push off at all. I walk by dragging my leg forward from the hip, NOT by pushing off with my foot.
If the same thing happens on the right, I will no longer be able to walk. I will be confined to a wheelchair. My life would be unliveable. I don’t know that I could live independently. I don’t know that I could life here.
So that can’t happen.
I have to go back to my neurosurgeon. And I have to have surgery. I have spondylosis, severe facet joint arthritis, torn and bugling discs at all levels, spinal stenosis, and spondylolisthesis at L4. It was grade one 18 months ago when I last saw my neurosurgeon. He said then that the day would come when I would walk in and beg him to operate on me, the pain would get that bad. (He was not being unkind when he said that, he was being brutally honest).
He said spondylolisthesis only goes one way, and that’s downhill. And that paralysis was rare, but was already happening in my case. He said I would need a four or five level fusion, after which my spine would be significantly more stiff, and I would lose a lot of mobility. BUT I would have less pain, and I wouldn’t be in danger of paralysis or losing bladder and bowel function. It would be major surgery, however, six or seven hours, and have a recovery of a year or more.
That was 18 months ago. I suspect the spondylolisthesis has progressed. And its time for surgery. But hopefully just a laminectomy, for how. I’ll need another MRI to find out.
But just the thought of surgery, full anesthesia, and being an in-patient, and being utterly dependent on nursing staff for my every need is causing a panic attack. I have to stop now.
Where he poked and prodded my spine is excruciating pain. My right knee iand ankle are going numb, and my hips are exploding. My RA is flaring all over, and while that is horrid pain, it is not as sharp and severe as the spinal pain. It absolutely adds to the pain burdon though, and I am going to have to take more oxycodone. I can’t walk. I will need to lie down for the rest of the day. I will not get my bracelet orders done today (I promise 48 hour shipping, so that’s OK. I just much prefer to get them out within 24 hours, because people want fast shipping).
I will take another targin and another oxynorm and they will reduce the pain. But I will also feel horrible nausea, gross dizziness, which will render me bedridden anyway. Opioids have horrible side effects. Opioids are NOT fun drugs. Opioids for pain do NOT bring a ‘high’. Opioids do NOT cause euphoria. Opioids cause nausea and dizziness and dopiness and a nasty sense of disequilibrium. I do NOT enjoy the side effects of opioids. I would MUCH RATHER not need opioids. I would love it if I could never again take an opioid medication.
But I need the pain to be reduced. I can’t bear it any longer today. No one could, or should, have to bear pain like this. It’s inhuman. And until something better is discovered, it is not right to take opioids away from people in pain.