March 2019 – GP appointment

I ran out of pain medication, because my pain levels have been ever increasing.  Because I am tapering prednisone, and not allowed nsaids.

So I took three targin (slow release oxycodone with naloxone) per day, instead of two.  Sometimes four.  Life’s like that when you have a couple of painful diseases.  It gets to a point where you can’t take the pain anymore.

And I told her so. 

She’s pretty cold. I like that about her, actually. I was getting really tired of the false platitudes and paying $40.00 to be told ‘there’s nothing I can do’ or ‘I wish I could help’.

You can help. Its your job to help. If you can’t help, stop taking my money.  She is efficient above all else. And she has the widest knowledge of any person I’ve ever met.

She had a medical student with her today. He seemed lovely.  Compassionate, empathetic, sense of humour.  He will need all of those in spades if he makes it through his training to be a doctor.  I’d love to catch up with him in ten years and see how many of those qualities he retains, and in what proportions.

Doctoring is hard.  Very hard sometimes.

But chronic pain patienting is harder. Far, far harder.

I have been in daily pain for 15 years.  That pain has been constant for 10 years. That pain has been severe for 8 years.  I have been on opioids for intractable pain for 8 years.  I have been on moderate dose (10-20mg) of prednisone for 8 years.  The last four years the pain has reached unbearable levels. The last year my spine has degenerated to the point where my left leg is partially paralysed, I have no calf function, I have numbness and weakness down my left side. 

I have RA pain in every joint, but it is only severe a few times a week. Generally speaking its just an ache. There are times where some joints don’t hurt at all. I don’t call my RA severe anymore, but the pain in my spine is worse than any RA pain ever.

When I took Actemra things changed. I think it made a permanent change to my disease. I have far more swelling, but less pain. I’ve heard that before – some people with the most impressive swelling and even deformity have only moderate pain. And some with severe pain have no outward sign of such.

Rheumatoid arthritis is like that.  Anyway, mine has been much milder since actemra.  Im also on 15mg of sub cut methotrexate, and arava and plaquenil. And 10mg of prednisone. It SHOULD be controlled with all of that. But I’m not flare free. I’m never pain free.

When I told her my pain was out of control and that I couldn’t function she said “but you’ve done so well to get down to 7.5mg”  I agreed, but said life wasn’t worth living.

She started explaining the ills of prednisone for the medical student’s benefit.  I told her I’d run out of targin because I’d taken I’d taken them 8 hourly rather than 12 hourly, because they don’t last 12 hours. 

She said I can’t do that. I said I had to. Stale mate. 

She asked whether I’d seen the pain management doctor she’d referred me to. I told her I’d called them, and they were going to ‘triage’ me and get back to me with an appointment time.  She said why didn’t you keep calling. I told her they rarely answer the phone and don’t respond to emails. I asked her if she could please call them and get me in to see the doctor quicker.

I did this because the student was in the room. Might as well take advantage. 

She called.  It rang out. No message machine. Nothing.  She looked annoyed.  I said “they don’t answer much”.  I wanted to say “see?  I told you that’s what they’re like.  Pain management my butt, they are only there to make money”

She told me to call again in the morning. I promised I would.

She asked my why I had another holter monitor on.  I told her it was my tens machine.  Pain relief.

She nodded. 

I said the cardiologist hadn’t gotten back to me either.  I’d had my one month long event monitor off for several weeks, they were supposed to make me an appointment too.  I still have the event monitor.  I said the upside was that obviously there was nothing scary on my event log, but I really needed to return the holter, and I was pretty sick of taking flurosemide (strong diuretic) because I am sick of having to pee every five minutes.

She wasn’t particularly amused, but the med student was.

She reminded me to keep taking them until I’d seen the cardiologist.  Whenever that might be.

She mentioned my endocrinologist had written to her. I said my endocrinologist was very quick because I’d only seen her a couple of days ago. I asked if the bloodwork I’d had done for her was back, and could I have copies.

All mostly normal, still macrocytosis (large red cells) but my folic acid and b12 are fine (no shit).  Low vitamin D (doesn’t everybody have low vitamin D?  Ok, I’ll increase my supplementation).  TSH a little high (bull crap. No way am I reducing my thyroid dose. Personally, I feel better when my T3 and T4 are a little ABOVE the range, but they’ll never let me stay there.  I wish they’d listen to me, its my body. And given that I’m really, really sick anyway, why can’t I make those decisions? They have no idea what to do, so given that I’m a very informed patient, and probably know more about all of this stuff than your average GP, I think I should have the right to choose.

But no.

Testosterone is low again, estrogen in the normal range but actually HIGHER than last time.  Um, that’s not possible. I haven’t taken any estrogens.  And I don’t have ovaries.  I told her it was at least 100miUL/L higher than a month ago.  She looked at me blankly.  Skipped over it.  She’s used to dealing with ‘impossible’ at least once or twice during most consults with me, but we were already running over time and she knew I had more to address.

I feel pretty good sex hormone wise, so I let it go.  I know that high prolactin could point to the pituitary tumour that my endocrinologist suspects is there, but I didn’t say anything.  If I did I’d appear paranoid, and I don’t need that.  My endocrinologist isn’t a diagnostic genius, she examined my brain MRI from a few years ago and thought there was something on the pituitary on that scan. Possibly a tumour.   She actually asked me six months ago to get a pituitary MRI, but I had so much else going on I just forgot.  So I think I will get that done now. She may well be right.  I’m just so damn sick of scans.  I need ‘probable cause’ or to know that it will actually change my treatment before I will pay for, and submit myself for more scans.

Ok, onwards to morning cortisol. Remember in my previous post, my endocrinologist was pleased with me getting to 7.5mg or prednisone, but said that she had to check my morning cortisol before going lower?  She said that I couldn’t be experiencing adrenal insufficiency because I was receiving the physiological dose.  But my morning cortisol needed to be over 200, maybe 250 for me to go lower.  She said she would call me next week and we’d discuss the blood test result.

So…drum roll please…what’s my morning cortisol?

48.

She’s going to get a surprise when she sees that.  She’s going to be confused and…annoyed.  She’s going to have to revise her treatment plan. My body is behaving as if its not getting enough corticosteroids.  But it is.  So she’s going to have to work that out.  She’s not going to like that.  48 is of course far better than the 25 it was a year ago when I was really, really sick.  But 48 is still not good.

I feel a bit vindicated, because people who aren’t making enough cortisol truly do feel shit.   She told me so in much more polite terms.

Still, I’ll deal with that next week when she calls.  Everything else is pretty much normal, maybe 1 or 2 points high or low, but nothing on a trend to follow.

I then asked her about the bone scan and explained that I’d called Boy Wonder immunologist (I used his real name, best keep him anonymous, don’t want to be sued for telling the truth) and Boy Wonder immunologist completely ignored me. Despite my explaining I was not able to function, my pain was out of control and I needed to know if the bone scan showed inflammation, if the pain was inflammatory arthritis and therefore I should return to my rheumatologist and ask for a supplementary treatment, to go along with the methotrexate, plaquenil and arava (haven’t started the arava yet, bit worried about my liver).

She said ‘good logic’ in the same way you might say ‘good boy’ to a puppy who just took a dump on command:  she’s done the right thing, but you’ve still got the great steaming turd to deal with.

Anyway, the bone scan shows no sign of the metabolic disease that Boy Wonder was looking for (remember my seven-standard-deviations-ABOVE-normal bone density?  That’s a disease.  Just not sure which one. Not the one he thought, apparently.)

It shows mild uptake in my shoulders, hips and right knee.  Mild uptake.  They will translate that to mild pain. That is so not true, sometimes the pain is severe. BUT its not constant severe pain like in my spine.  I’m glad there is some uptake I suppose. There is something there at least.

My spine lit up like a Christmas tree.  Cervical, thoracic and lumbar.  I’ve known my spine was severely degenerated for a long time.  Most 90 year olds have better spines than I do. I’ve always put it down to untamed inflammation, years and years of it.  My rheumatologist says no, but every other doctor says yes.  He’s a very unpleasant person, but he could be right.  I also have no erosions, but think about that bone density for a second. My bones are very, very hard. So the cartilage goes, and they call it osteoarthritis, but my very, very hard bones do not erode.  That’s what Boy Wonder said, anyway.  Makes sense to me.  So lack of erosions does not exclude rheumatoid arthritis or another inflammatory arthritis for me.  I mean let’s face it, there is nothing else that causes swelling, stiffness pain and weakness in your joints long term.  I have inflammatory arthritis, its just not my worst pain.

My spine is. And the bone scan bears that out.  My thoracic spine isn’t often painful, but cervical and lumbar are. Lumbar is by far the worst though.  It is the pain that I try hardest to escape.  It is the pain that wakes me every day. It is the pain that makes me contemplate suicide. 

And I am not expecting a magic pill. I have tried four of five different physios. My most recent definitely made me worse.  I’ve tried exercise physiologists.  Exercise, with a personal trainer and without.  I diet to keep my weight down (losing battle).  I have also tried acupuncture (pleasant but useless for pain), Chinese medicine (yeah, no) and even Reiki.  Again, pleasant but useless.  Meditation helps.  I am working on my meditation skills. Because it does help some, I want to get better at it. 

Point is, it’s not like I’m just asking for opioids. I’m end stage back pain.  Definate nerve compression and that pain is BAD!  Everyone acknowledges that it is terrible pain, unless  you want them to treat it.  Then they fall back on ‘opioids bad’.

Leaving a person in agony is pure cruelty. I feel like I have a knife in my back, all day every day.  Some days it feels like it is being twisted, all day every day.  Have you had orthopaedic surgery?  Where they file down some bones and such?  It hurts when you wake up, but you still have the anesthetic going on. It’s the second day at home when the pain is nasty.  It hurts a lot. 

That’s what I feel like every single day of my life.  Can you imagine dealing with post-surgery pain eternally?  Every day?  All day?

If you’ve had surgery, you can.  You know what I’m talking about.

Anyway, good news on the ‘no nasty metabolic (fatal) disease’.  I wish my hips and shoulders had lit up a bit more emphatically, because they do hurt more than ‘mild uptake’ would imply.  But they are a ‘4’ against my spines ‘9’, so it does make sense to me.

Fact is, bone scans are non-specific for inflammatory arthritis. So they can use this against me either way.  Lots of uptake? Non-specific. Mild uptake?  Non-specific.  A doctor who wants to see inflammatory arthritis will be vindicated by mild uptake, a doctor who wants to prove there is no inflammation will be vindicated by mild uptake.  Doctors always see what they want, and once you start to pay attention, their confirmation bias is very present. 

It just means my smartass dickhead rheumatologist will see no need to give me more treatment for my rheumatoid arthritis.  I don’t want a biologic anyway. Several of them have caused massive weight gain, and I am not prepared to have more of that.  I’ll stick with prednisone. For me, prednisone never caused weight gain.  Because I don’t eat much.  Actemra changed my metabolism, for the worse. And it seems permanently.

But back to the point.  Bone scan.  Good news, really.  My spine is a mess.  It shows that. I think I need to go back to my neurosurgeon. I think I need to consider surgery.

Its now ten minutes later and I have stopped crying.  I just lost the plot at the thought of actually needing surgery. 

I can’t do surgery.  I need to be assured that I will be looked after post-op.  I need to know that the nurses won’t see my calm demeanour and decide I’m not in pain.  I need to know they’ll monitor my vital signs.  I need to know if my BP is crashing that they’ll take action.  I need to know if I’m bleeding internally that they won’t let me DIE this time.

And if I get through all of that, I will have a 12 month recovery. 

And if I get through all THAT, there is no guarantee I’ll be in less pain.  There’s only a 25% chance of success.  But improvement?  Hard to say. When pain is this bad, even a 10% improvement makes a big difference.

But…surgery.  Helplessness.  Completely at the mercy of people who don’t give a toss if I die.  I don’t want to die.  I have terrible luck. Only one of my surgeries was complication free, all the others involved extended hospital stays. And the hysterectomy almost cost me my life.

Surgery.  PTSD.  I can’t do it. I can’t live with this pain.

Anyway, that’s about it, I think. 

Oh wait, pain meds.

She’s upped my targin to 30mg extended release, from 20mg.  She told me that she will not continue to do this without the input of a pain management specialist. I’ve seen them all. They are all only here to charge exorbitant fees.  They don’t want to help. They are all convinced that EVERYONE has a pain sensitisation syndrome, because that *theory* is the darling of the pain management world.

I don’t have a pain sensitisation syndrome because I can cope with a lot of pain. And you can’t have a high pain tolerance and a pain sensitisation syndrome. So those treatments are not the correct treatments for me. All the same, I’ve tried those treatments. Guess what? No help.

Anyway, I have enough opioids to get me through another week, when I need to go back to her for review.

I’m going to up my prednisone back to 15mg.  I can’t cope with life. I need to function.

My son needs to go to university. And before you judge, if he were in a wheelchair you would agree that he needs help to get to his classes.  His disability is socio-emotional.  It is NO LESS REAL.  All you people who gave me parenting advice over the years, shame on you.

The Chicklet is doing OK.

My bedroom is still a war zone. No date yet on when they will start work on repairing the water damage.

My father has dementia and will need to go into care. My mother is not coping, despite the warning signs being there for many years. I’ve been talking to her for hours daily, and it is very difficult. Tomorrow we have a meeting at the hospital to discuss his future. He can’t stay in hospital, he’s been there for three weeks. He is not improving, and he needs a long-term solution. My mother is devastated, I need to manage the situation and support her.

I need to be upright.  And functional.  I am most likey the sickest person and the person in the most pain, but I have to manage all of these situations.  There is no one else. There has never been anyone who supported me. Never. It has always been me supporting others.

Right now, I have to be the support person and manage the transitions.  This is my family and I honestly think of all the love and support I gave to people who weren’t family who took it and never once thought that maybe they should support me back. They are all well aware of how difficult my life is.  To those people, though I paraphrase  “Thank you for showing me who I do NOT want to be”

Shame on you too.

So prednisone it is.  There will be pain, but it will be manageable.  I will be able to function for a few hours a day. I will be able to drive a car. I will be able to keep the wheels turning.  I have no choice. I;m seeing Boy Wonder sometime in late April I think. I’ll taper back down once the worst of this set of problems is sorted.  So he can see me at 7.5mg.   Given that he ignored my pleas for help, I have no more faith in him.  Just like so many before him. 

I have to function.  I know the consequences. It’s my choice.  What use is a life on the couch, where I can’t help my family?