The truth about living with Rheumatoid Arthritis

Pain / Pain relief

Complications of Radiofrequency neurotomy – sometimes other nerves get irritated

I called Dr Pain-management’s rooms. As expected the nurse tried to tell me it was normal. That a little bit of pain, some bruising was normal.

I had to interrupt her and tell her this was not a bit of bruising, nor was it that feeling like being hit in the back. I have had a radiofrequency neurotomy before and I know what is normal afterwards.

Also, I would not be calling about a ‘little bit of pain’. This is severe pain, very concentrated in one area. It feels like nerve pain, because if I lie still, I am pain free. But if I start to move the pain grows and grows until I have to just freeze. I can take maybe ten steps before I can walk no further and the breath is knocked out of me. My leg also collapses out from under me sometimes. It is NOT normal.

This pain is more severe than the initial lumbar spine pain that the ablation was supposed to treat. On the upside, the lumbar pain is almost non existent. So it was a success on that front at least.

She said sometimes nerves get nicked or irritated and can cause some pain for a few days. She said wait until Thursday and if its still a problem Dr Pain-management can do an injection into the nerve to calm it down.

So fine. That’s what I’ll do. I hope it improves, but seeing as it hasn’t improved much in four days, I’m not hopeful. I am betting I’ll be stuck on the couch this week. And not safe to drive myself anywhere. Just. Great. My son’s first week of school holidays. Awesome timing.

But there is nothing I can do, so no use complaining. I’ll wait it out and hope for the best.

Did my doc screw up the radiofrequency neurotomy?

The ablation (radiofrequency neurotomy)has stirred up my spine big time. I am so much worse now, than before the ablation. Why? No idea. Did the doc screw it up? Is this temporary? It BETTER be temporary.

The pain is largely at the back of my hips. Left worse than right, and it radiates around to the front. Also shooting pains down my legs. This whenever I move. If I lie down, its OK. If I stand up completely straight and don’t move. Its OK. If I move any which way, shooting, strong pain starts going everywhere. Fireworks, but nowhere near as pretty.

I can walk if I take tiny steps. Even so, I can only walk a few paces before the back-of-hip pain starts radiating. It quickly gets to a point where it takes my breath away and I have to just stand there and be very, very still until it passes. But it doesn’t really pass. It gets a little better and I take tiny fast steps back to the couch. And lie flat.

I had so much planned for today. I am SICK to death of being stuck on the couch. My arthritis pain is barely there. Mild. Annoying maybe. It barely counts I really don’t need this crap!!!

Dear karma, would you please give me a freakin’ break cos, in all honesty, no matter what nasty things I did in a previous life, I think I’ve paid my dues now. Really.

A friend said I sound angry. Damn straight I am angry! I have had enough. I am so sick of this shit. I want my house clean. I want to go buy carpet, cos there are some really great sales on right now. I have been waiting for months for the EOFY sales. I know exactly what I want and where it is. But I can’t get there.

I can’t do much of anything. This is completely incapacitating. It was NOT mentioned in the brochure. It is, however, better than it was this morning. I was considering the ER even though I know that’s stupid and they will do nothing for invisible pain. You need blood and guts for the ER. But I am lucky, I have friends who will take me if I can’t stand it anymore.

I can stand it. I just have to lie still. Here on the couch. And try not to look at the mess that is my house. And try not to think about all the things I was going to do today. I can watch GoT. I can edit photos. I can do anything that doesn’t involve actually moving my lower body.

I am sick and tired of not being able to choose. It’s Saturday. Most people are doing things that they choose to do today. Recreational things, after a hard week at work.  Most people are having some fun.

My life is static, same, pain fuelled. Just when Im making progress on one front, something else comes up to knock me down. And I have no choice but to lie down on the couch and wait for things to get better.  Angry, yep. I’m angry.  And another day goes by that I’ll never get back.


Percutaneous radiofrequency neurotomy of the lumbar spine

Home from my second radiofrequency nerve ablation of my lumbar spine.  Or percutaneuos something neurotomy. I forget what the proper term is.  Im on the couch and I can’t reach my paperwork. And Im not moving. Maybe I’ll edit this later.  But I think you know what I mean – where they burn the nerves that feed your facet joints in an attempt to stop you from feeling pain.

I had one on SI/L1 six months ago and it was very successful.  So I have been looking forward to this procedure, even though I hate being anesthetised, and have been suffering from procedure/surgery fatigue.  As in,  I don’t want to be poked or prodded or injected, or incised again for a very long time if I can help it.

I thought I was going to have L2-L5 on both sides done today. When I got into the operating theatre, and they asked me what procedure I was having today (routine), Dr Pain-management informed me he was only doing the right side, L2.  I said, no, please, I need both sides done, and all of the damaged facet joints.  As per MRIs.  He started to argue, saying he hadn’t done diagnostic injections on all of those joints.

I told him I’ve had multiple cortisone shots into all of those joints, and having them all done is the best chance I have of feeling good.  I stated emphatically that I didn’t want to have to return in two months for another procedure, so please, please (yes I begged) could he just do all of the joints.

I was getting ‘very emotional’ as pointed out by the anesthetist, who grabbed my arm and told me he was going to start injecting the sedation drugs.

I asked him to stop, I wanted to finish discussing what exactly was being done first, with my doctor.

The impatience and annoyance in the OR was palpable.  Dr Pain-management doesn’t have a good bedside manner, but he is a good doctor.  I focussed on him.  He told the anesthetist to wait.

The nurses were lovely, but they were standing clear.  Patients do not argue in the O.R.

Argue is really too strong a word. I was disagreeing with what was written on the sheet.  I was asking for the treatment I believed I needed.  I stated that I would rather have more done than less, this is my second ablation and while the first one was successful, I felt that I needed more joints done, higher in my spine.  The MRI shows severe facet joint arthritis up to L5. So I wanted them all done.  I’ve had so many procedures, and cortisone shots previously I’m quite sure they are all contributing to my back pain.  I’m just as sure that if I only get some of them injected, that I will still have a fair whack of residual pain.  I know pain free is a pipe dream.  But I want to get as close to that as is realisitic.  And why shouldn’t I aim high?

Then I said the magic words.  I told Dr Pain-management that I had discussed all of this with is nurse…we’ll call her Liz.  And that Liz had assured me she had discussed it all with Dr Pain-management.

He paused. He then agreed.

The anesthetist took charge.  We were running late now.  He said he was going to start injecting the sedation drugs, and it ‘might hurt a bit’.

It hurt like hell! I have never had I.V. sedation cause pain.  I actually had to tell him ‘It’s really hurting’.  And you know I didn’t want to admit that.

He said ‘oh, sorry, I’ll include a little local in there as well then.’  I remember thinking ‘he did that on purpose’ before my paranoid brain went sleepy bo-bos.

I wanted to remind those people in the OR that I was paying for this procedure. That while they were the experts in the procedure, it’s my body. That I may be just the patient, but I am an informed patient. And it’s far preferable to me to burn off a few nerves that didn’t need burning, than to have to go through all of this yet again.  The time, expense, fasting, organising someone to drive me there and back…all of this stuff AGAIN.  Hospital is not fun. Even just a simple day procedure is not fun.

But my brain went black. Probably a good thing really.

Last time I was awake through the entire procedure.  I was chatty and happy and could tell them when they were in the right place.  This time the guy just knocked me right out.  Unconscious patients don’t argue. Whatever.

I woke up a while later (no idea how long) in recovery overwhelmed with emotion.  I think it’s because that’s what I was feeling when I was knocked out.  The nurse was lovely and told me not to worry, lots of people wake up and have a good cry.  It’s just a side effect of the medication.  That works too.

The first thing I was aware of was severe pain in my back. Wait, wasn’t that supposed to be gone???

Horrible, sinking feeling in my stomach.  It didn’t work!  I know, I’ll cry. Oh yes, that’s better.

Five minutes later I was OK.  Logic returned.  The pain in my back is normal.  On reflection, the sharp lower down pains aren’t there, this is other pain.  It’s a strong ache and the post procedure instruction sheet says ‘You may feel like you’ve taken a very hard hit in the back’.  Sounds about right.  Add to that my arthritic hips, and this is all normal.  I remember my back was very sore for a few days after my last ablation.  Just momentary panic and confusion coming out of the sedation.

The rest of the sedation wore off quickly.  I wanted out of there as soon as possible.  I told the nurses I was feeling great, so they got me coffee (ahhh coffee!  Even bad coffee is sensational post fasting) and those little sandwiches.  I LOVE those little sandwiches!

I cut the blubbering and put on a big smile.  I was polite and grateful and asked if they could please call for my ride home.  They were short staffed because two nurses had called in sick and they were waiting for replacements.  So it took another hour.

But I’m home now. On my couch.  Not capable of much, the back pain is still bad.  But I do expect over the coming days that it will improve.  I am hopeful.

With the combination of methotrexate injections having more or less halved my arthritis pain and now this ablation on my spine, there is a real possibility that I’ll be up and walking around a lot more often than being couch bound.

I have been aggressively pursueing pain relief for months, and I am at the end of my to-do list.  Now we wait and see how good ‘good’ gets.

Dr Pain-management saw me post procedure and confirmed that he had done both sides, L2-L5.  I thanked him profusely.  He said my spine is weird. He was convinced that where I was pointing was higher, but it corresponded to L2-3, so he decided to do the rest, because it made sense.

He also talked briefly about a spinal cord stimulator implant for pain control.  He said to make an appointment with him in four weeks and we’ll discuss that.  And that we could do a cervical ablation as well, as the facet joints in my neck are pretty bad as well (he DID read the MRI) and he could help relieve that pain also.

We’ll see.

I’m very grateful that he decided to do what I asked for.  I wish I didn’t need to argue the point in the OR.  Not your strongest position, half naked on an operating table, trying to be polite and overcome pre-op nerves and still make a strong, reasonable case.  Shouldn’t have been necessary.  I will not trust ‘Liz’ the nurse again.

But it’s all over and done now.  I think good for me for being far more assertive than I used to be.  Also good for my doc for listening to his patient.  I’m sure the back pain will be much improved, possibly as soon as tomorrow.  I tend to bounce fast.  I have to.  Single mother and all that.

It would be nice if there was someone here to fetch me Tim Tams and cups of tea, but there isn’t. (Clearly my own fault. Yes, I’m still upset about that.)  I can get them myself, anyway.  The tea at least.  It appears the kids scoffed all the Tim Tams!  I really have to find better hiding places…

And now it’s time for a nap.  And I’ll report back in a week and let you all know how successful my percutaneous radiofrequency neurotomy has been.  (Knew I’d remember eventually.)  Nighty night.

Rheumatoid Arthritis and one good day

Today broke me.  Why?  Because yesterday was so amazing.  So awesome.  No pain in my hands and feet.  Good hips, minor lower back pain.  Shoulders not too bad, elbows all good.

And energy.  Enough energy to get through the day.

Yesterday was one of those rare, rare days when I felt pretty good.

I used to have one or two of those a week.  Then they reduced to one or two a fortnight. Then once a month.  Now they only happen a few times a year.

When they do, I tell myself its temporary. I tell myself over and over.  I beat down that little voice that is trying to say ‘the latest drug is working! It’s finally starting to work!!!’.

I tell myself, and tell myself, and tell myself…just enjoy today.

But still, I hope.  It doesn’t take long for that hope to build.  Only a day.  Only a day for me to start planning a whole bunch of things that I will do.  That I can do.  That will happen.

Finish painting my house.  I plan my next holiday.  Places to go, people to see.

It only takes a day.  It is the curse of the natural born optimist.

And then the following day the knives return.  And they are relentless. And I think ‘how?’

How can this be gone for one day and then return so viciously?  How can I have forgotten in one day how painful this is?  How can my tolerance for this pain have deserted me….in one day.

Because today is just normal.  Flaring all over, to varying degrees.  Knives in several joints.  Just deep aches in others.  No energy.  So, so tired.

But that is normal for me.  A normal day.

But most upsetting is that my SI joint is flaring.  Three days after all that cortisone.  Sharp pain there.  There is no way to rest the SI joint. Everything you do transfers forces through that joint. Unless you just lie in bed on your back completely still.

Should I do that?  It’s not even an option today.

So I went to the gym and walked on the treadmill to loosen up.  Get the synovial fluid moving, hope for some relief. And it provided some.  Until I cooled down again.  And stiffened up again. But for a while the pain was less.

Then there are all the things that needed doing. Trip to the shop, get groceries.  Done.

Then all the things I wanted to do.  Undone.  Not one thing I wanted to do today was doable.  All those beautiful plans from yesterday.  Gone.

Not forgotten.

Rheumatoid Arthritis and pain management specialists

painMy GP has referred me to a pain management specialist.  I have been to one previously.  It was through the public patient system at the hospital. I attended three times, each time I saw a different doctor.  Each doctor questioned why I was there, as I should be at the rheumatology clinic.  When I explained I had unmanaged pain secondary to my severe rheumatoid arthritis, all they suggested was opioids.  MS contin, oxycontin, endone, oxynorm, targin.  So my GP and I agreed that he was quite capable of prescribing those meds and the pain clinic was a waste of time.

As the years have gone on, and I have yet to find the magic cocktail that controls my rheumatoid arthritis, I have progressed to using ms contin and oxynorm daily. At levels that my GP is not altogether comfortable with. So he referred me to another pain management specialist.  He’s apparently the best, and he runs a private practice.

I have found the public system is generally pretty dismal.  Private doctors have served me better.  So I agreed to go see this specialist, and was quite hopeful.

Until I learned that before you see him, each patient must attend a two hour information session on how to manage your pain.  This might be great for newbies.  But I’ve been at this for a long time. I have tried many therapies.  I was very tempted to cancel the whole thing.  Mostly because sitting for two hours is extremely difficult for me. Being forced to sit still increases my pain.  I need to get up and move.  I didn’t have a lot of faith in any pain management specialist who would expect prospective patients to do this.  I also expected it to be a whole lot of same old, same old.

And it was.  I have just returned, and it was not an easy two hours, nor an easy drive home.  I had to get up and move around the room, as did four other people.  The signs of chronic pain are very obvious to someone who suffers chronic pain.

The other five people in the room suffered intermittent pain, and were not in pain, or not in much pain this day.  (We were all questioned about our conditions, and duration of symptoms, and our pain levels today). For them this was an appropriate introduction to the practice, and the therapies they offer.

For the rest of us, I’m not so sure.  We’ve all filled out questionnaires about our pain, and the degrees of it.  And received a booklet that recapped what was discussed in today’s session.  Each of us will receive a phone call after the Doctor has reviewed our questionnaire, with his recommendations for which therapy or therapies he believes would be helpful.  These include physiotherapy, exercise therapy, hydrotherapy, acupuncture, massage therapy, diet and nutrition, pain counselling, mindfulness and self-care (reducing stress, pacing, balance of movement and relaxation).  I have tried all of those, and even if I were interested, I can’t afford these therapies.

A fair bit of time was spent on the mechanism of chronic pain. How sometimes the injury or cause of the pain has healed, and yet the pain continues.    I tuned that out.  Not relevant to me.

However, they did also mention nerve ablation, TENs and central and peripheral nerve stimulators.  These I AM interested in.  Even more fascinating, was ketamine infusion.  Essentially putting you under a general anaesthetic.  Supposedly this can ‘reset’ the brain’s pain receptors.

I’m really interested in this, because I’ve been put under a general twice, and each time my pain levels were reduced significantly for up to a week.  I even asked the anaesthetist why this might be so, but she had no idea.  I googled, and could find no information.  So I gave it up as a coincidence and forgot about it.  Until today.

The only problem is I’m terrified of anaesthetic.  I hate being put under. I’m convinced I’m never going to wake up.  Ridiculous, irrational fear.  Even though each time, I have woken up feeling fabulous, I still don’t want to go under again.   But it looks like it’s a valid therapy.  But I’m sure, as a therapy, it must be prohibitively expensive. As most of these therapies are, when you are on a disability support pension.

I have to postpone my appointment with the pain management doc because I can’t afford it right now.  I would wind up about $100 out of pocket, and right now that’s just not doable.

But I can wait.  I’m sure my pain will still be here in a few months, and the doctor will still be available.  And I can try some of these therapies then.  If he deems them appropriate.  I have to keep trying. I will always keep trying.

Time will tell. It will be an interesting phone call.  I look forward to what he has to say, and what he believes is the best treatment plan for me will be.

Wait and see…