Feel Like I’m in a Holding Pattern

It goes like this. On April 6, 2024 I started my NINTH psoriatic arthritis medication. Sequential, not together! Some medications have a loading dose period: this is one of them. So for four weeks I have injections once a week. Then I move to monthly injections. The first monthly injections are the week after the last loading dose injections, so effectively the patients have weekly injections for five weeks in a row.

You’ll notice I said injectionS – no, that is not a typo. The dose is not available in Australia in one pen, so I have to use two pens. This is not a problem for me as I find the pens really easy to use.

A previous biologic I was on was fine during the loading phase, then when I got to the normal doses, in that case an injection every eight weeks, I found it wasn’t as effective. I’d be great for about three weeks, then steadily feel worse for the next five weeks. Not a great situation to be in.

So, while I feel very good right now, I am waiting until June/July to see if this medication will be effective for the full four weeks between injections. Of course I am hopeful! But that is why I feel like I am in a holding pattern. There are things I want to do, get involved in, but I feel I can’t yet commit to anything that involves other people until I know how this treatment is going to pan out longer term.

At least I’m not taking any NSAIDs or prednisolone and I’ve taken Panadol Osteo about three times a week. YAY me! Or YAY the new medication. Because I’m not taking those additional medications (and I’m moving), I’m also managing to shed the weight gain that occurred while I was taking them. Thank you, 2023. Not my favourite year, let me tell you.

Another aspect of being chronically ill that is driving me nuts at the moment is the amount of effort required to remain, well, functional. So much planning goes into ensuring I get the movement required, balancing with the rest required. Then of course I’ve just had nine months of rehab exercises from first the knee replacement surgery then the ankle surgery. Not to mention the cast and the knee scooter and the moon boot! At the moment I’m kind of on the come back trail: the last four weeks have been good, let’s keep going. My first walk after the ankle surgery was February 14, a whole 0.8 of a kilometre. Now is much better.

I drop my target step count on the days I lift weights, which is every third day. Some days the weather may impact my step count! This is Melbourne, after all: we can have sunshine one minute and a howling storm five minutes later.

Garmin walking record for a month
Garmin weight lifting/resistance training record for a month.

Reconditioning one’s body after nine weeks essentially immobile when that body is already challenged by psoriatic arthritis (and, umm, advancing years) requires a bit more planning that usual. Yesterday was a classic case. I did not make my 7,500 steps. I needed another kilometre, but for whatever reason/(s) a few things were grumpy by the end of the day. I opened my front door. Stood there for about 30 seconds and decided (sensibly) this was not happening. Closed the door and came back inside!

My lower back did play up off and on once I got moving again. Being “misaligned” for nine weeks on the knee scooter then the moon boot was not something my back muscles and left glutes liked AT ALL, I discovered. Lots of heat packs and stretches involved and all is now back to normal.

In summary, some days I end up feeling as if all I do with my life is work at keeping this disease under control. In the early years, I was still working, I had a purpose to keeping it under control. Now there are days when I wonder why on earth am I putting in all this hard work? Which is why I need to be DOING something other than just “keep active”. I need to have something to DO. Which explains the holding pattern dilemma. Thank goodness for my psychologist allowing me to vent!

I’ll get there! It is just a frustrating time and we all have them.

I’m still happy to be past the tip of the bell curve (top photo) for my daily step count given my situation. And remember, that is only Garmin wearers, many of whom will be very active, not the whole population!

By the way, I’m freaked out by the number of people that are freaked out about patients injecting ourselves! Many diabetics have been doing it for years! I’m not sure why we (i.e. those with other conditions) are seen any differently.

Robyn DunphyLeave a comment

Tough, But Worth It!

Yes, I’ve been very quiet. VERY quiet. I know, I’m sorry. Recovery from my November surgery took quite a lot of effort. On top of that, the mobility restrictions meant my psoriatic arthritis decided to complain, so I was fighting on two battle fronts.

My ankle surgery took place on November 28, 2023. My first completely pain/discomfort free walk was March 22, 2024. 16 weeks and 2 days.

I’m not repeating the details previously documented, so if you are catching up, read the surgery article linked above first! The moon boot was better than the cast and knee scooter for sure. I could shower without “bagging” my leg in plastic bags! I didn’t have to sleep in the moon boot! I was no longer doing three-point turns in my small apartment or constantly reversing in and out of spaces. I could drive! I was no longer so totally dependent on other people, I had a modicum of freedom.

I was allowed to go to the gym to do upper body work. ONLY upper body work, but at least it was something! The gym staff looked at me a little askance, but let me in.

I was to gradually increase the percentage of weight on that leg each week and could try proper shoes at week four of moon boot life. I will admit I snuck into shoes a couple of days early because the moon boot meant my legs weren’t the same length and my right piriformis muscle was not overly impressed with that situation. I was VERY careful though.

At my 12 week post-op my surgeon was very happy with how everything had knitted and I was finally allowed to go to the physiotherapist. It is amazing how weak your calf and ankle muscles can become after 12 weeks of no use. Surprisingly, this physiotherapist wasn’t as bossy as the knee physiotherapists: exercises every second day instead of every day.

On February 14 I started short walks – between 500 and 800 metres depending on how the ankle was feeling. I managed my first 1 km walk on February 20 and have slowly built up from there. March 21 I walked 2 km in one hit! I should add I was doing multiple walks a day by this stage, with the physio’s permission.

While the ankle/foot wasn’t really painful, it wasn’t 100% comfortable either until March 22. That was the day I felt free!

Funny conversation with surgeon at the 12 week post-op.

Me: “So I have no restrictions now?”
Surgeon: “No, you’re fine!”
M: “So I can do the leg press?”
S: “Sure!”
M: “So what weight can I start at?” (Thinking to myself 50 kgs seemed reasonable to start)
S: “Oh, just the plate, no weights!”
M: Thinking – that sounds like a restriction to me!

It always pays to clarify. I think maybe he didn’t consider his nearly 70 year-old patient was going to be doing things like the leg press. Have I got news for him!

I have interesting rehabilitation exercises, such as standing on one leg for 30 seconds and calf raises on one leg. Now, to be honest, I still cannot do the one-legged calf raise, but I’m getting there with a little help from the other leg. A little less help each day. Hoping I can do the single leg calf raise by my next physio visit!

So yes, it was well worth it, but man alive, am I glad I only have two ankles. I’ve learnt a lot of this experience and will plan the next one with the knowledge I now have about how VERY different this is from knee replacement surgery.

Of course not every ankle surgery will be exactly the same as mine. Other patients may spend less time in a cast for example. Or more time in a moon boot. It definitely isn’t as easy as knee replacement though.

Due to the lack of exercise during those weeks of recovery, my back is not happy. It is getting happier now I am back to a more normal routine, but some days have been quite tough. Moving is not as bad, most of the time, as being stationary, luckily. My back has been under control for some years, due to the work I keep doing on my posterior chain to support it, but at my age we decondition faster than in our twenties – I’m having to build up that strength again. The shoulders and wrists didn’t like the crutches either – the psoriatic arthritis complained. Both wrists and shoulders are now improving with increased exercise and no irritation from the load of crutches.

One thing I wasn’t happy about was once I could walk 1 km, I discovered I’d lost another point on my VO2 Max reading. I was devastated. While I don’t do high intensity exercise and therefore don’t expect a high VO2 Max reading, I do want something healthier than “poor”! Thankfully, I’ve worked hard enough this week (shown below) and last week to recover that measly one point. The lost of the one point had worried me because it was the continuation of a downward trend that started early 2023 and so desperately want to turn it around and get back to where I was.

Steps per day March 19 - 25
Formal measured walks per day March 19 - 25

So that’s it for this ankle. When the next one will be done is debatable. Naturally the surgeon looks at risk mitigation from the perspective of the risks of surgery. I’m looking at it from the recovery perspective. It doesn’t matter how brilliant his surgery is if I am not well enough to manage the recovery properly and at this point in time I’m still not sure we will get my psoriatic arthritis under control. I needed my wrists, shoulders, piriformis and back to be better behaved. I managed, but it was tough.

Onwards and upwards! I need another 3,700 steps today to hit my daily goal, so off I go!

Robyn Dunphy2 Comments

Yippee! Finally, Second Knee Replaced!

That was a long journey! But I am all good, the second knee replacement is done and shows every indication of being as great as the first knee replacement. July 26 was New Knee Day!

I wrote comprehensive articles relating to my first knee replacement. This time I’m writing about the differences between the two experiences.

The 2020 articles:

I have NOW been told my 2020 recovery was “exceptional” while this recovery has been “typical”. They didn’t tell me that back in 2020, just that I was doing “so well”.

The Lead Up

As with the 2020 operation, this initial operation was also cancelled and rescheduled. In 2020 it was due to Covid-19 lockdowns. This time, in 2023, it was due to my psoriatic arthritis (PsA) being out of control. As well as medication for the PsA, I was also on NSAIDs and prednisolone as we (hopefully) waited for the medication to kick in. For surgery I had to reduce the NSAID dose from 400 mg p/d to ZERO. I had to get the prednisolone down to 2.5 mg p/d. I wrote about those requirements and what happened when I did a trial run in Crossing My Fingers – Again.

With the change to pain medication for me, my GP and I were confident we could handle the 10 days required with no NSAIDs, but yes, IT WAS DIFFICULT. By the time I was due to be admitted, I could barely use my hands at all before 11 am, as an example. The hospital admitted me the night before on medical grounds as there is no way I could have got myself there by 6:30 am the day of surgery.

I’ve talked about my teeth issues: yet another tooth (the third) played up just prior to surgery – in fact it split and half basically fell out in the dentist’s hand. My dentist advised it needs to be removed by an oral surgeon and did a temporary patch job. My GP had prescribed precautionary antibiotics which I arrived in hospital with. That caused quite a kerfuffle and there was talk of cancelling the surgery. Thankfully, that did not happen. My surgeon does not like surprises! Good thing too, but certainly was a bit traumatic at the time.

Last time neither my PsA or my teeth caused any complications!

Surgery

Pretty much the same as last time – I was out for it! However, surgeon came to me after surgery and said it was very “messy” once he got in there. The inflammation had caused damage to muscles that he could “stick his fingers into” (the holes). Will the muscles heal, I asked. He believed so. I forgot to ask which muscles! He last described it as “terrible”. I’m not sure if terrible is worse than messy!

Reading the letter the surgeon sent to my GP, it was again the popliteus muscle that was so badly damaged. This is the same muscle that was being dissected by a cyst in 2020, just this time it was worse.

The scar looks pretty much a mirror image of the left leg! it is also the same length – 23 cm for those into scar dimensions.

Post-Surgery

One good difference, one not so good.

First, the good difference. In 2020 my glutes spasmed uncontrollably and very painfully 10 hours after surgery. In the end, Lyrica was used to solve the problem. On that basis, the peri-operative physician decided to start me on Lyrica immediately post surgery. It worked, no spasms. My glutes, ITB and piriformis were still painful and needed physio work, but there was no crazy spasms like last time. Yay! I was also on far less pain medication overall with the change my GP and I had made and which the surgical team adhered to.

The not so good difference was my veins kept collapsing and we had to find new cannula sites. This was not fun, especially at 2 am in the morning. Why were they causing issues? I don’t really know, although having been on prednisolone for so long pre-surgery was suggested as a possibility. I ended up with quite a few bruises. The machine would beep madly and display “Downstream Occlusion”. I’ve left out the bruise photos!

The darn catheter was not a relief. I’d been rather looking forward to not having to worry about toilet trips immediately post surgery, but I felt as if I wanted to “go” all the time. Very annoying!

The x-rays look pretty much like last time! As does the dressing.

Of course I got makeup on and my nails done! The nails were done before the makeup and my hair is wet in the photo. But I was in hospital, so I’m allowed some leeway!

Rehab

Patient transport (to move me to the rehab hospital) was about 2.5 hours late and I nearly missed out on lunch!

Basically, rehab went pretty much like 2020. One difference was I left rehab still unable to do a straight leg raise. I managed to get those happening by four days later. It just took longer this time to get those quads really firing.

The other very sad difference was the wonderful massage therapist who had rooms at this hospital in 2020 is no longer there. Thankfully the physios treated my glutes and ITB!

The food was pretty good!

Home!

A hint. DO NOT accidentally hit your operated knee on anything. I did and I think I set myself back a week. Very grumpy with myself. I was a bit concerned and went to the surgeon’s office to have it checked on Monday (August 21). The nurse told me it looked fine, just to take it easy for a few days. So I did! Unusual for me, I know.

I’ve had ice packs on the knee and heat packs on my hands and glutes! Plus the spikey ball got a bit of use on the glutes too. Ice packs are good after the rehab exercises.

I am still taking pain medication, whereas in 2020 I had stopped by Day 20. As I write, this is Day 33 for this knee. I am older, the knee was messier and I accidentally hit it. Plus my PsA is still not under control (i.e. inflammation). My GP says to be realistic about the differences. I have reduced the pain meds considerably from when I first got home so that’s good.

I also have a theory about sleeping. My knee will be fine all day, but I’ll have pain or discomfort during the night. One night I woke up thrashing my leg around the bed, as if trying to shake off pain. Even this morning I woke up with the knee quite stiff. I think during our waking hours we are very careful and (usually) ensure we don’t do anything to hurt the knee. But when we sleep we toss and turn and can put the knee in positions it doesn’t actually like. We wake up as a result. Pain and/or stiffness can result. I wonder if bracing it at night might be a plan, but that only occurred to me today.

I am doing the rehab exercises religiously, as I did last time. On Friday (August 28) my flexion was measured at 128 and my extension was 100%! I never got to 100% extension with the left knee, I got to 98%. But I did get to 145 flexion at week 10, so that is again my aim. I may not get it, as I am heavier now than I was in 2020 due to the PsA and related meds this time around. It is still my target though.

I am walking every day. Started with two little walks a day, gradually increased. Today I was back to my favourite walking spot!

Now, skip the next photo if you are squeamish. I think it looks great! Looks better now, this was a week ago. It is getting the Vit E treatment now. The scar from 2020 is barely visible any more.

So that about sums it up. As for the PsA, six days before surgery my rheumatologist changed my medication again, but I wasn’t allowed to start the new medication until 10 days after my surgery. It may take three months to know if this one works, so I am back on the NSAIDs and prednisolone while we wait. This is medication number 8. The hands are a little better now, but I am scared of counting my chickens before they hatch. The shoulders are also a little better. I do think I’ve been keeping Voltaren in business!

A Thank You!

Again, a very big THANK YOU to my surgical team. Same surgeon, same anaesthetist, same peri-operative physician as 2020. Absolutely fantastic. I am so happy to have matching knees!

Robyn Dunphy6 Comments

Down with the Bad, Up with the Good

Thankfully, my second knee replacement surgery is back on the agenda! Woo hoo! I’m excited!

I suspect some people may wonder why I am getting a knee replaced if I can walk 7,500 to 8,000 steps a day and do “formal” walks totaling 4 kilometres a day. How can my knee be THAT bad if I can do that? Only due to great care and diligence, let me tell you. The aim of this article is to give some tips on how to manage walking leading up to surgery. If I don’t replace the knee, I am very limited in what I can do. I can’t spend my life walking in a straight line.

As described in Crossing my Fingers – Again, we felt my new biologic was finally kicking in. My GP wanted me to keep my medication dosages stable for a week or two, which we did. On May 30 I dropped my NSAID dose by half and have managed to maintain that. I saw my GP again on June 6. We felt if I got a surgery date, we’d make it. So I have a date! Next month! Now, we recognise that during the 10 days before surgery where I have to be at zero NSAIDs, I MAY have to increase my pain medication to compensate, but as this is only for 10 days, that’s acceptable. I did something similar for the last knee surgery too (there are links at the bottom of that article to the full knee replacement story). I also have to reduce my prednisolone, which I have starting doing this week. I’m NOT pain free, by any means, but I’m surviving!

I do have to be very careful to keep the bung knee in line, no twisting! I can’t fully extend it, although flexion is not quite as bad. Bending down to pick something up off the floor? OUCH! Having it bent while sitting at a dining table, for example, results in pain when I first get up from the chair.

I need to keep exercising to ensure I’m ready for rehab. Last time I was doing glute bridges on the dining table. Sadly, down I’ve downsized, my dining table is doubling as a desk, so I have to find other ways.

Here are my walking tips.

  • Make sure you have good, supportive shoes. This is an absolute must.
  • Choose a pleasant place to walk if you can. The photo above is where I love to walk. It is encouraging!
  • Keep an eye on the terrain. If I accidentally step into a small pothole with my bad leg, the pain is NOT GOOD.
  • Pay attention to your posture. If walking in a shopping strip, shop windows can be useful. In a park, check your shadow. Is your back straight? Shoulders back?
  • You may start limping because your body may decide to shorten your stride on the bad leg without you even thinking about it. Try to maintain the stride length if the pain is not too bad. This will depend on several things: what pain management program you have going, how bad the joint is, etc. You will need to “warm up” first, but I find I can control the limping without increasing the pain. Why is this important? Because you don’t want to shorten and/or tighten soft tissue like tendons prior to surgery if you can avoid it.
  • Down with the bad, up with the good. When negotiating steps, stairs or gutters on pavements etc, down with the bad leg, up with the good leg. Why? Less bending of the bad leg (especially bad knees). I stupidly walked down the stairs to the car park in a hospital the other day. Very bad decision, I should have waited for the lift! Even with this tip, stairs are hard to negotiate!
  • Inclines and declines. Where I walk there are very slight (well, very slight for MOST people) inclines and declines. Some on the actual path, but also bridges like this. While I have little problem with the incline, the decline is difficult. Depending on where the damage is in your knee (or other joint) you may find the reverse, or you may find both are a little challenging. Slow down, hold the rails if there are some, maybe decide that track is not for you in future.
Incline Decline
  • Don’t walk until you’ve “thawed out”. As we know, psoriatic arthritis is notoriously bad in the mornings. I take time in the morning to gently thaw myself out. The knee awaiting surgery will most likely also stiffen up overnight. While some mornings are better than others, I rarely do my first walk of the day before 10 am, sometimes not until 11 am. Even then, the first 200 metres or so are warming up.
  • Split the walking if at all possible. I’m retired, I can walk whenever I like, but obviously some patients are still employed. If you can break up the walking, do. At the moment it takes me about 15 minutes to walk a kilometre. You can fit a kilometre in here or there throughout the day. Take a slightly shorter lunch and a longer tea break, perhaps. Not possible in all jobs, I know. Winter means walking after work is not really appealing. Think about ways you can split the load.
  • As we all have different pain management regimes, I can only speak of mine. At the moment I am on a slow release (SR) twice a day and have some instant release (IR) for breakthrough pain. On a day where I’m not too bad, I may need no IR at all. If I am feeling the knee is a little too grumpy, I’ll time the taking of an IR (maybe only half) so that it kicks in before I start walking. This is all about listening to your body.
  • When you get home from a walk, I suggest elevating your feet for a while, but do not allow your legs to “freeze up”.
  • Remember to adjust your goals if you are doing other “stuff”, as I discuss in Why is There a Dip in My Stats?.

Once I have done the first walk of the day, I usually have very low pain levels for the rest of the day. We are all different, our joint damage is different and some, like me, have underlying conditions such as psoriatic which do complicate matters. So while that is my situation, I accept it may not be yours.

I also have two ankles requiring surgery. The left ankle is very problematic at the moment. When I was on my higher dose of NSAID I would know when I hit 500 metres on my first walk of the day as all of a sudden, the ankle would stop hurting as much. When I dropped the NSAID dose on May 30, from then it has taken about 800 metres before my ankle stops hurting. Hence it is important I time that IR dose properly if I feel it necessary. When I say “stop hurting” do I mean pain free? No, sadly, I don’t. Some days are better than others, but the level of pain is low enough that I can keep up the walking. And, once it is gone, it is pretty much gone for the rest of the day, thankfully.

We are all different. Please talk to your doctor and/or physio about what may be specifically appropriate for you.

Do not expect every day to be the same. For some weird reason this morning was awful for me. I even battled to pull my sheets out of the washing machine (nothing to do with my knee). I had a nanna nap after lunch (VERY unusual for me). Yet now, as I write, I am fine. I reduced my prednisolone yesterday morning, I think my body is adjusting to that reduction.

If you have any questions, I am always here to help if I can.

Addendum: The following is a good article from The Guardian about walking technique.

‘I’m not just faster, but taller’: how I learned to walk properly – and changed my pace, posture and perspective

Robyn DunphyLeave a comment
Walking Graph

Why Is There A Dip In My Stats?

Above is a snapshot of my walks for the last four weeks. In my last article I wrote I was improving. Yet we see there was dip yesterday. Why is this so? You’ll be pleased to know it is a deliberate dip. A very deliberate dip, in fact. Recently I wrote Let’s Revisit Pacing. If you are new to my work I strongly suggest you click that link and read that first as this is, essentially, a sequel. A real life example.

Improvement has allowed me to get to the point I am walking 4 kilometres each day: but that was all I was doing! At least that was my primary use of energy over and above actually fueling the bodily functions that keep us alive: pumping blood, breathing, digesting food etc.

Yesterday I did two activities that require energy, that chew through our internal battery charge. I had a shower and I did grocery shopping. This wasn’t a “nip down to the shops and grab a pint of milk” trip, this was a monthly stock up. When I got back to my apartment it was four trips between my apartment and the car to bring everything inside. Then the effort of putting it all away.

When I initially wrote about what I call our internal battery, I stated I didn’t have a charge meter on my arm! I do now: my Garmin watch. Here it is for yesterday (Saturday) compared with Thursday. For whatever reason, I hadn’t charged my battery as well overnight Friday night, so I was already a little low on fuel Saturday morning. I will state I am not sure how accurate this is for chronically ill people – I’m working on watching it carefully – but it is certainly an indicator. Blue is charging your internal battery, orange is using it up.

Another point to note is that most of the step counters will not register steps, or register steps accurately, if you are pushing a shopping trolley (or similar activity). Very annoying, as I think I walked about 1,000 steps just around the supermarket. Consequently there is also a dip in my steps for yesterday, even though I was moving. For those wondering the blue bars below are where I did not achieve my daily goal of 7,500 steps. Green bars are goal achieved!

Why not 10,000 steps you ask? Ahhh, well, yes, I have that covered too! Read We Need Personalised Numbers to understand the 10,000 figure is a myth.

Healthy people reading this will most likely understand shopping uses energy. They might raise an eyebrow over the shower taking energy. Trust me, for most of us chronically ill patients, a shower consumes energy. Many of us need a rest afterwards. I don’t usually, but I do at the moment.

What I did yesterday was adjusted my activities so that I did not Boom/Bust. I don’t need to burn through my internal battery one day then be wiped out for the following two or three days. Having a goal of 4 kilomtres a day is great, but at this stage of my “comeback” I am not risking any post exertional malaise (PEM). If I have to do something, like the grocery shopping, I will adjust my walking goal. Hopefully. in a few months I won’t need to: I’ll be back to my “normal”. Right at the moment, I’m not taking that risk. When I do head back to the gym for strength training, initially I will drop my walking goal for that day.

Using Movement As Medicine is not a simple “just get out there and walk”. It requires careful planning and monitoring. I hate “bust” days and monitor myself very carefully to avoid those days. Over time, following the pacing principles, I can do more. Pacing is the golden rule here! Today I walked 5 kilometres. I’ve been working up to it and I did nothing else that used energy today (other than writing this, of course).

Robyn Dunphy1 Comment
Gardiners Creek

Crossing My Fingers – Again

My apologies for my silence over the last six weeks or so. I counted my chickens before they hatched.

On March 12 I published Changing Medications – What Can You Expect?. At that point it was roughly ten weeks since I had changed my medication for psoriatic arthritis (PsA) and I was finally feeling as if the new medication was starting to kick in. I was a little overly optimistic, as it turns out.

Also, although not mentioned in that article, the whole situation became more complicated when I slipped/tripped and fell in the shopping centre car park on March 8. What I initially thought was a simple trip ended up with me back in my orthopaedic surgeon’s office. To cut a long story short, it was decided the time had come to replace my right knee. If you are new to my story, I had the left knee replaced in 2020.

The problem was the slight improvement I’d got overly hopeful about in March did not continue. I was quite quickly back to waking in considerable pain and struggling with malaise and energy levels.

At the time I saw my perioperative physician I was still on 400 mg of Celebrex and 15 mg of Prednisolone a day. In order to undergo surgery on May 10 (the scheduled date) I needed to reduce the Celebrex to zero by May 1 and the Prednisolone to 2.5 mg per day by a week before the surgery. Was this going to be a challenge, I wondered to myself. I certainly didn’t want to just stop the Celebrex cold turkey on May 1 as clearly I was still in need of it to function on a daily basis. I’d needed friends to drive me to a myotherapy appointment and my pre-op Visionaire scans. Essentially, I wasn’t too chipper.

I discovered I had another infected tooth – maybe THAT was the problem? Had that tooth removed. It was a rather complicated event as the tooth was part of a double crown. I spent over an hour in the dentist’s chair, most of that time was spent removing the crown and temporarily recrowning the uninfected tooth. The actual extraction was a minor part of the visit. However, removing the tooth did nothing to improve my overall inflammation.

On April 17 I could see May 1 looming and decided I’d see if reducing the Celebrex was at all possible. Celebrex comes in capsule form – you either take a capsule or you don’t, there’s no pill splitting here! So I dropped from 400 mg to 200 mg on that Monday. Deliberate timing, as I had a GP appointment on the Tuesday. If anything went wrong, I already had an appointment! I also had accepted another kind offer from a friend to drive me to that appointment.

I woke up on the Tuesday in a very unwell state. While I managed to sit up in bed and get my feet to the floor, I could not actually stand up. This was a bit of a worry, to say the least. As gross as this sounds, I’m sharing for transparency: I was very worried about actually getting to the toilet in time. I tried using my walking stick to give myself some leverage, but doing so hurt both my hands and my shoulders due to the angle. Eventually I managed to stand upright and shuffle to the bathroom. While I was on my feet, I shuffled to the front door and unlocked it from the inside – if I had to call an ambulance, at least they could get in. Obviously I was in no position to start reducing my anti-inflammatories!

After various communications between my GP, rheumatologist and knee surgeon, the knee surgery was cancelled for the time being. My CRP and ESR inflammatory markers were rather high and THAT was while I was on all this medication. What would those markers have been reading if I was on no anti-inflammatories?

I did a damn good job on my rehab of my first knee and it is FANTASTIC! I want to be able to achieve the same result with the second knee replacement. At that point in April I was able to walk a mere 800 metres at a time because my ankles were so painful, the left one in particular. I knew that the extra loading of that ankle while recovering from surgery for the right knee could be very problematic. All things considered, cancelling the May 10 date was sensible, but very disappointing. I want the knee done, but there is no point in being a less that optimal patient if that can be avoided.

My next new medication injection was May 4 and I was getting closer to the 24 week mark – SURELY it would start working!

On May 4 (a Thursday) I gave myself the scheduled injection. Nothing much changed until Monday May 8. I did feel an improvement. I managed to walk 1.5 km in one walk. In total I walked 3 km for the day. I have slowly built up during the week and on Friday I walked a total of 4 km over three walks – I’d hit my old goal of 4 km for the day. Saturday I walked 2 km twice. The possibility of post-op rehab is now looking more achievable! I’ve even walked at my favourite walking spot, shown in the picture above.

For those into graphic representation, here are the last 8 weeks. PLEASE NOTE Garmin changes the scale between the two periods, which makes the March/April bars look WAY higher than most of the April/May bars. And of course I haven’t finished today! Look at the total kilometres: 11.2 km versus 58.9 km

HOWEVER – I’m still on those same dosages of anti-inflammatories. I asked the GP about a possible test reduction and she was rather adamant that I give myself two weeks before we try to change anything. I haven’t even mentioned the pain medication I’m also taking or the Voltaren gel I am using on my hands and ankles.

While all this was happening, my rheumatologist scanned me for gout. The CT scan came back negative, which as the rheumatologist said is both a good and a bad thing. While it is good I don’t have gout, we are back to square one. Why is my inflammation so high? Is it merely that the new medication is taking its own sweet time to be effective? Or is my body being difficult?

Speaking of difficult bodies, I also did something rather adventurous. Click the image to go to the website.

While I am not going to go into detail about this test, it has been useful to me. My report was 29 pages long. To give you an indication, this is a summary of my genotype for the genes the test currently looks at.

We have changed two of my medications as a result. We also know to watch out for certain other medications in the future. This test does not yet cover every medication known to science, but it covers a lot. If you are interested, I suggest you speak to your GP about whether it may be useful in your situation. Yes, it is rather costly on a limited income but I see it as an investment in my health, given my situation.

Right now I am nervous that I am again counting my chickens before they hatch. Today is day eight of incremental improvement. I’ve managed to walk 4 km three days in a row, hopefully today as well. I have more energy. I’m writing. I haven’t ventured back to the gym yet, although I desperately want to.

In summary, as I said in my first article on the subject of changing medications, it is often not as simple as opening a different pill bottle. Even as I write, I do not yet know if this medication is going to be effective for me, but at least I have had eight straight days of improvement. I can exercise reasonably well again. This morning I woke with far less pain in my hands! So I’m crossing my fingers. The last blood test results showed a slight improvement in my inflammatory markers.

If you or someone in your life is changing medications, please be gentle. Be understanding. Be aware it may NOT be smooth sailing. 

Robyn Dunphy4 Comments
Movement As Medicine

Let’s Revisit Pacing

In late 2017 I wrote Pacing for Beginners. That article still holds true, but I want to revisit the concepts. In the years since, I have talked to many people. It is obvious that people do have Movement As Medicine or exercise recommended to them to help manage their conditions, especially in relation to pain management. A common thread I have detected is those same people aren’t given any guidance in how to use movement or exercise as medicine. I’m going to stick with movement for the rest of this article as not only can the word “exercise” seem daunting to some, it also implies a “heavier” workload than I am suggesting.

It is worth mentioning at this point, I learnt about pacing at the Barbara Walker Pain Management Centre. There are not enough of these pain management centres around the country, sadly.

This graphic represents what happens if you don’t keep your body moving. None of us want this. These changes increase pain.

de-conditioning

People relate to me that they did a really good four kilometre walk but know they will now be stuffed for two days. I cringe. NO, NO, NO – do not do this! This is NOT Movement as Medicine! That is setting yourself up for failure.

I will be the first to say using Movement As Medicine requires very great care. I have a strong suspicion many patients (without the benefit of having attended a pain management program) dive in too drastically initially, find they hit the Boom/Bust cycle, then get turned off the concept of movement altogether. Not surprising really. My rheumatologist still says to me “and keep up the exercise”. Great – but he is not a movement consultant – he doesn’t tell me HOW.

I can imagine a patient without any other guidance taking the “get exercise” advice too literally and trying to do the exercise they used to do before they became unwell. That definitely will not work. Unless you are very, very lucky. Most of us are not that lucky, or we wouldn’t be sick in the first place.

It is impossible for me to paint a picture that covers everyone in one article, so please think about your own condition while reading my illustrations. Inflammatory diseases are notorious for being worst when we wake up. Movement sees us gradually thaw out. Whether this is to the point of no pain at all or somewhere along the spectrum depends and can vary from day to day.

At the moment I have one finger that is being particularly problematic. I have to splint it at night to prevent it locking. In the morning when I wake up it is very painful. If I did not use that finger in any way, it would stay painful and get worse, be worse the next day. And the next. I apply a heat pack to it. I stretch it. I massage it. Ultimately I have a pain free finger for the rest of the day. Yes, I do think it needs a steroid shot, I just haven’t had time to organise that, so in the meantime I’m using Movement As Medicine principles. Plus one finger is a good small example.

A contact on Twitter told me the other day she is currently doing 250 steps every hour. Many readers may think “why bother”. I congratulated her. For many of us, that would be a darn good starting point. We are not setting out to climb Mt Everest, we are trying to manage pain – completely different objectives! If 250 steps in your starting point, that is what it is!

In my original 2017 article linked above I talked about the mathematics involved. I suspect mathematics turns people off too, but it is critical. Here is what I said in 2017.

Let’s assume for the maths that like I could, you can walk five minutes before you experience discomfort. It is very important to know your starting point. Smartphones have easy calculators: the keystrokes for the below example are 5 + 4 = 9 / 2 = 4.5 * .8 = 3.6.

The important point here is just because you CAN do 5 minutes, that is NOT the starting point.

  1. Take that five minutes as your Test 1 measurement.
  2. After a suitable rest, do a second Test. The Test 2 result might be four minutes.
  3. Add 5 + 4 = 9. To find the average of your two trials: 9/2 = 4.5 minutes.
  4. Now you need your baseline, your official starting point. This is 80% of your average. 4.5 * 0.8 = 3.6 minutes, or 3 minutes 36 seconds.
  5. Increase at a rate of 10% from your baseline. 3.6 * 1.1 = 3.96 minutes. Let’s just call it 4 minutes!

Each day (or week depending on the type of activity) you increase by 10%. JUST 10%. On your calculator that is “current time” * 1.1 = “new time”.

10% a day increase is reasonable at a 5 minute walk, but for longer durations and other activities, the increase should be spread over a week.

Two factors control your Movement As Medicine activity. The duration AND any perceived change in your body during the activity. If you feel an increase in discomfort, you STOP! You do not push through. The mathematics apply to durations and also to increasing weights and other aspects. For example, the leg press. I will increase at 10%, so from 100 kgs to 110 kgs. Admittedly, it can be fiddly to find the right weights. Increasing from 50 kgs, you need to go find the 5 kg weights. Once at 55 kgs, there is no weight to allow you to increase to 60.5 kgs. In some cases the mathematics have to result in “as close as we can get”.

I’ll use my shoulders as an example of knowing when to STOP. Towards late 2021 my shoulders played up to the point I needed ultrasound-guided steroid shots in both shoulders. It was around the time my first biologic stopped working for me. Swimming definitely helps me keep my shoulders pain free BUT I am very, very careful about listening to my shoulders as I swim. If either of my shoulders starts to feel painful, I stop. That’s all the swimming I’m doing today, even if it is less that I did last time. I do not push through.

Shoulders are a good joint to talk about because I may have a degree of discomfort for the first lap – stiffness from lack of use. Over time you learn to recognise the difference between the discomfort that disappears during warmup and the pain niggle you might get after several laps that tells you to stop. Those two things feel very different. Swimming is something where you can’t reduce your range of motion, as you can in the “on land” remedial shoulder exercises I also do. So stopping is important. No, do not do another two laps to round it up (I’ve been known to do that). With the on land remedial exercises, I can reduce the range of motion or reduce the resistance – if that is then a pain-free movement, I will continue.

This article has covered just a few examples of NOT rushing in where angels fear to tread. Movement As Medicine is not about “doing what you did before”. It takes care and planning to get it right.

Other Recommended Reading:

Robyn Dunphy1 Comment

A Dark Day

Trigger warning: this article covers issues that some people may find confronting.

Please be aware as you read this, I am fine. I debated about sharing this experience as I don’t want to worry anyone, but on the other hand the purpose of this site is to help people like me living with challenging health conditions. Yes, the primary emphasis is on exercise and Movement As Medicine, but so much of “life” impacts our struggle on a daily basis, I do venture off on non-movement tangents. This is one of them.

I feel if I do not share this experience, I am not being fair to my readers. One of my objectives is to illustrate we are not alone in our battles. The challenges might be different for each of us, but there are threads of similarity.

As we know, I was recently hospitalised. While there I had three methylprednisolone infusions. Shortly after coming out of hospital my prednisolone (by tablet) dosage was upped to 50 mg per day due to my ongoing psoriatic arthritis (PsA) inflammation. For me, that is a LOT of corticosteroid. It may not clinically be a lot, but I do not know that – I am the patient here, not the clinician.

Most of my life, I avoided anything “cortisone” sounding like the plague. Why? Well, the answer to that can be found in my recently published family history trilogy, starting with “The Background“. In case of “too long; did not read” reactions, short version is my mother committed suicide, I suspect as the result of psychosis – a possible adverse reaction to cortisone use. She had been on cortisone most of her adult life. Probably at higher doses that we now use. Consequently I have always been wary of carrying a possible genetic predisposition to an adverse reaction to the medication.

Over the years since my diagnosis of PsA, I’ve taken prednisolone periodically at generally small doses with no major issues. Sure, for me, it makes me as hungry as a lion, causes fluid retention, weight gain, disrupts sleep (OH, does it disrupt sleep) and my ability to control emotions is reduced. If I am angry, you will hear it in my voice and see it in my eyes.

Today is Wednesday. Yesterday started with absolutely no sleep Monday night. I had slept like a baby Sunday night, which may have been part of the problem – I wasn’t tired Monday night. And yes, Movement As Medicine does come into this because on Monday I did very little movement because I had been to see my GP, driving around, my ankles were sore etc: the very reason I was taking prednisolone in the first place, after all. So I went to bed not physically tired. I couldn’t fall asleep, even with melatonin on board. I did not sleep. All night. May have snagged an hour between 6 am and 7 am, but I’m not even sure of that.

So Tuesday was a pretty shit day, to be honest. It got worse as the day went on. I did not get dressed. There was no lipstick. I felt really, really flat. If anything, a bit like I had felt when I had a reaction to methotrexate. I think that prior experience may have been concerning me a little as well.

Please note: both the medications I talk about in this article work brilliantly for a great many people! I am NOT against the medications themselves in any way.

Now, I’m not sure how to make this next bit clear: if it is unclear, please ask for clarification. The doctor will ask (as she did when I rang) are you having any thoughts of self-harm or suicide. And my answer is “No, not for ME, but I am always aware BOTH my parents did commit suicide and am VERY clear to myself that is NOT where I want to go. HOWEVER, I’m very ignorant (Note to self – fix this ignorance) about what or how “it” could happen. Therefore I think about it in terms of the history and the fact I am on a related medication.”

Now, I have no clinical evidence of my mother’s suspected adverse reaction. However, neither am I going to ignore the possibility. Sadly, I can’t get clinical evidence. It is too long ago, I was provided no medical records at the time. It wasn’t deemed necessary to give kids their parents’ medical records.

At 6:30 pm last night I rang my wonderful GP clinic. I do love them so much! My GP was not available but I did speak to another GP. I explained the situation and said my biggest concern, I realised, was I had NO IDEA what to watch out for IF I was having or going to have a adverse reaction. I also pointed out it could just be the absolutely no sleep, I was aware of that. At this point I hadn’t slept for 36 hours.

The GP pointed out psychosis was considered a very slight risk adverse reaction: I said I understand that, but my family history sort of counteracts that statistic in my mind. I prefer to be cautious!

The GP gave me some contact numbers specific to my location (hence I’m not publishing them as not much use to people in Queensland, for example) should I feel worse at (say) midnight.

Because I was SO exhausted by bedtime I slept like a log and woke up this morning feeling normal. Well, normal for a sick person on ten prescription medications and a few non-prescription ones like melatonin and Panadol Osteo plus Coloxyl to counteract the effects of the pain medications. At no time in my previous eight years of this journey have I been on TEN prescription medications at once and hope very shortly we get that down to three and then two (one for the thyroid, one for the PsA – that’s enough). Do I worry about possible interactions of so many meds all at once? Yes, I do. I just hope if there was a problem it would have been discovered before now.

My message here is don’t be afraid to reach out to your medical team. I could have called my psychologist, my rheumatologist or my GP. I chose my GP because she is who I feel knows me best and would most easily understand where I was coming from. I feel really concerned for chronically ill patients who do not have continuity of provider, it is SO important in managing our conditions. Critical, in my view. But what would I know – I’m just a patient. That comment is made with a very cheeky grin – none of us are “just a patient”. I can’t emphasise strongly enough the benefit it was to me to be able to talk my concerns through with the GP last night on a telehealth. I was able to go to bed not worrying, which I feel contributed to my good night’s sleep.

I’m back to this version of me today!

Mental Health Contacts:

Lifeline: https://www.lifeline.org.au/ Ph: 13 11 14

Beyond Blue https://www.beyondblue.org.au/ Ph: 1300 224 636

I have written about the need for mental health support previously: We Need Mental Health as well as Physical Health

Robyn Dunphy2 Comments
leg press

Variety can be the Spice of Life

#MovementAsMedicine does require some variety (i.e. adaptability) at times. When we consult remedial exercise professionals, they invariably provide us with a program of exercises to follow. For those of us who are pedantic people, we then set about following that program to the letter and can get quite frustrated if we can’t. This frustration can lead to us not doing what we can, when we can, even if we can’t do the whole program.

We need to be adaptable. As regular readers or fellow psoriatic arthritis (PsA) patients will know, PsA is notoriously unpredictable. It isn’t the only condition to be unpredictable, many are.

Let’s assume for the moment I (or you) have a program. But I wake up today and my wrists are borked. I have a choice. I can feel frustrated about the situation and throw the baby out with the bathwater and not do my program at all because I don’t want to leave blank spaces. Or I can simply accept the upper body is not getting done today, but I can do lower body.

Because I am my own trainer, my program is in my head. I adjust what I do in any given resistance (weight) training session based on how various bits of my body are feeling on that day. So I never leave blank spaces on a page – there is no page! Over the last eight years, I haven’t had to be as adapatable as I have had to be during the last six months or so. These have been a trying few months. As I write this article I’m not doing any weight training at all, much to my disgust, but the inflammation is just too high. Until we (“we” being mostly at this point my rheumatologist) get it under control, I’m resorting to water based activity.

Under normal circumstances, current predicament aside, I will leave out what may be problematic on any given day. Borked wrists? I’ll do lower body and core, I can catch up on upper body next time (or the time after). Thankfully my lower limbs don’t usually flare, so I rarely have to skip lower body although I would if necessary. There have been rare times when my piriformis muscle will be grumpy for a day or two and I do steer away from lower body work on those days.

Although yes, it does take us some time to learn to read our bodies, ultimately we, the patient, know our bodies best. I can now tell what is PsA related pain and what is not. For example, stiffness from lack of use! When I say it takes time to learn, I do mean quite some time. A couple of years at least. Even then, it is going to depend how your condition behaves during your learning and how well controlled it is by the medications. It is impossible to learn fine points of differentiation if your inflammation is raging at 100 miles an hour.

Yes, it is a bit of a Catch-22. On the one hand, movement is the very thing that helps resolve inflammation – lifting weights is a little bit more than just movement though and I don’t need to injure myself inadvertently. It does become a judgement call – is the inflammation just normal “typical morning stuff, move to get rid of it” or is it a bit more serious? Swelling plays a big part in my decision making too. If I have swollen hands, they’ll get movement, such as the warm water movement for my hands, but I won’t load the wrists or hands with weights. As an example, on Thursday last week I couldn’t even use my wonderful ergonomic mouse. Now, while we are here, that linked article talks about consistency and in some ways I may appear to be contradicting myself in this article, but that article is about maintenance under a relatively stable situation. Here I am talking about major condition discombobulation! Yes, I mention shoulder pain disappearing after a few reps and normally that is what happens. Right now though, I am in a different situation. I do think resistance training would help my anterior deltoids at the moment, but I need my hands to achieve that and so it isn’t happening right now.

Annoyingly, we need our hands for so many upper body exercises. In fact, just about all of them! So my biceps and lats (and delts) are getting off very lightly at the moment.

Don’t be afraid to be adaptable. Leave out bits of any program on days that a body part is problematic. Catch up later when that body part feels better. Talk to your remedial exercise professional, they will help you determine that line between being in a place where rest is required or where you should persevere. Sometimes it may be a case of reducing the range of motion or using a lighter weight for a few sessions. More reps, lower weight.

Just don’t throw the baby out with the bathwater. Variety can be our strength, just as important as Consistency. And don’t forget to PACE!

Robyn DunphyLeave a comment
Self Portrait

Unexpected Hospitalisation

As some will know, I was recently in hospital. I thought the situation a good practical example of the unpredictability of some conditions, including mine.

Here is the mentioned link to What Is Psoriatic Arthritis?

This article on Invisible Illness is one readers may also be interested in.

And yes, for those curious, I DID indeed get clearance from my rheumatologist before exercising!

Robyn Dunphy3 Comments