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 DunphyLeave a 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 Dunphy1 Comment
Medicare, bulk-bill, gap, rebate

Watch for Ambiguous Billing Terminology

I learnt a valuable lesson during the month of March, 2023. Words we think mean one thing, can mean something completely different to other people – I think in general life we are all used to this. When it comes to money, especially money involved in the costs of medical treatment, different interpretations can result in an unexpected and unwelcome hit to the bank balance and the budget.

I share these small examples to encourage ALL patients to double and triple check what their provider actually means when they refer to some of these terms. I also encourage the medical profession to be consistent and use clear terminology, removing all risk of ambiguity.

The terms I am looking at today are:

  • Bulk-bill
  • Out-of-pocket
  • Gap
  • Rebate
  • Non-rebateable

“They do not bulk-bill” does not technically mean the same as “there is no rebate” for a service. Many providers do not bulk-bill, but the patient still gets a rebate. Happens every time I go to my GP. I pay $260.00 and I receive the Medicare rebate of $223.40 overnight into my bank account. Please note that rebate is after having reached the Safety Net Threshold for the year. The fee is also for a long appointment.

The $36.60 is the gap and, to me, my out-of-pocket. A quick unofficial survey on Twitter showed 34% of respondents believe the same as I do. A service that has no rebate and is paid for totally by the patient is, in my simple view of the world, a private service. Like prescriptions for off-label use not being covered by the PBS subsidy – a private prescription.

So, when I was recently told an imaging provider did not bulk-bill, that is what I expected. That is not what happened.

When I arrived I filled out the MRI information and permission forms, including agreeing to $345 “out-of-pocket” expenses. Now, my pain medication befuddled thought process went like this. “That is the standard gap, but they don’t know I’ve hit the threshold, therefore my out-of-pocket will be much less.” The term out-of-pocket does NOT scream to me that there is NO rebate for what you are about to have done. Yet, in this case, that is exactly what it meant.

I knew that in order to receive a Medicare rebate for a knee MRI at my age, I now (Liberal govt changes to Medicare) needed a specialist referral rather than a GP referral. I had the specialist referral. So I thought I was OK here.

Turns out, Medicare “license” only certain specific MRI machines to be allowed to do rebateable knee MRIs for older patients. Other MRIs I have no idea about, but I will ask if I need any! The machine I had been in? No rebate. It isn’t that they don’t bulk-bill, it is that they CANNOT lodge a Medicare claim for my situation at all. Big difference!

The other incident was similar, but different. I rang to book an appointment to have an ultrasound guided steroid shot in a finger. The staff member taking the booking told me the cost was $285. I explained my having reached the safety net threshold to the staff member. Even then I was NOT informed that the $285 included a non-rebateable item number at a cost of $115. My having reached the Safety Net Threshold was not going to have any affect at all on that component of the bill. Why was I not informed? I have no idea.

When did I find out? After the service was provided, as I paid the bill.

In checking numbers for this article, I have just realised I am currently seeing a provider and paying a bill that is NOT being submitted to Medicare at all. At this point I have no idea why, but I will be enquiring. It maybe there is no Medicare item number for this visit type – is this another Liberal govt change to our Medicare system? When I was working, these sorts of things didn’t bother me and probably if they had happened would have slipped under the radar. Now, being on a fixed income, I pay much more attention to the dollars and cents involved in my medical care, given that is where most of my dollars and cents go these days!

Please note, in the grander scheme of things, these are minor expenses. One contact of mine details thousands involved in a chemo treatment that is not on the PBS for the particular cancer being treated. However, minor expenses, especially for those on fixed or low incomes, mount up. I had visions of a single parent being unable to do the grocery shopping this week because of such a situation. I’m also not an inexperienced patient – I’ve been walking this road for a while now. Yet even I got caught out by the ambiguity.

Be careful.

Robyn Dunphy3 Comments
Medications

The Costs of Medications

In 2018 I wrote “The Costs of Chronic Conditions” highlighting how many of our condition management costs are not recognised by “the system”.

Today, I’m going to look at medication costs in more specific detail, to paint a realistic picture of what happens. Similarly to my article yesterday, I hope family and friends may find this useful in building their understanding of the financial situation the patient in their lives is perhaps dealing with. The details I provide here are simply to paint the landscape. Every patient will be different, but the overall picture is one of many dollars on medications, not all covered by the Concession Card (IF the patient has one). Most of us don’t just take one medication for one condition: as you will see here, we end up taking medications to counteract the actions of other medications. It gets messy. And costly.

I am very concerned that a number of Long Covid patients are going to find themselves in exactly this situation, without a Concession Card.

For ease of calculation and summarisation, in this article the medication prices I quote are rounded up to the nearest whole dollar. E.g. Panadol Osteo is $9.49 where I buy it, in this article I’m citing $10. Prices vary between brands and retailers, I’m using the pricing of the brands I buy.

“But you have a Concession Card, your prescriptions are only $7.30!” I hear people cry. SOME of our prescriptions are only $7.30. Some, by no means all. On top of that many of us need over-the-counter medications. Prime example is the Panadol Osteo mentioned above. Not a prescription medication. $9.49 for 96 tablets. Six tablets a day usually, so that will last 16 days.

While on the topic of pain management, here is a strange anomaly for you. Palexia is a good pain medication that comes in both instant release and slow release. Guess what? The slow release is covered under the Concession Card (CC), the instant release is not. $20 for 20 tablets. I have needed both formulations during my recent “difficulties“. How long does 20 tablets last? Depends on the situation.

Here’s were it starts to get complicated. Pain medications have a well earned reputation for causing constipation. So now, per my gastroenterologist, I need to counteract that by buying Coloxyl and Movicol, both over-the-counter medications. Movicol is $20 for 30 sachets. Coloxyl is $14 for 100 tablets. Pain medications can also cause nausea, hence the Ondansetron (prescription, not covered by CC), although I do suffer nausea from time to time even without pain medication.

If I am taking NSAIDs (non-steroid anti-inflammatory drugs e.g. Celebrex) I have to double my Somac (pantoprazole). So while Somac is covered by the CC, now I need to fill the prescription more often resulting in increased cost.

Of the 16 items (a mix of OTC and prescription) listed below, only seven are covered under the CC. Less than half.

MedicationCost
Panadol Osteo$10
Movicol$20
Coloxyl$14
Palexia SR$7
Palexia IR$20
Somac$7
Prednisolone$7
Celebrex$7
The magic biologic$7
Thyroxine$7
HRT$7
Enstilar Foam$7
Dymista (nasal spray)$49
Saxenda$387
Zyrtec (for hayfever)$30
Ondansetron$17

There are other things not listed above. The Fess Saline Nasal & Sinus Wash kit was $13. Because of my psoriasis I don’t use soap or typical shampoo. T/Gel shampoo is $15 and Ego Pinetarsol solution is $22.

If I were starting from scratch to get all my “stuff” I would need $653 to buy all the above.

Then there are the unexpected events, such as needing an ultrasound guided steroid shot in a finger recently. When booking, I was told the cost would be $285. I said that’s fine, I’ve reached the Medicare Safety Net Threshold. The staff member did not tell me $115 of that charge was NOT rebateable!

Why am I tacking Saxenda? Because both Prednisolone and Thyroxine can make the patient hungry. Diabetes is a common comorbidity with PsA, so this is preventative, we do not need me developing diabetes. I should clinically be on Ozempic (MUCH cheaper) but there is a shortage as we know.

If a patient is still working and not on a CC, then the prescriptions will be dearer. Yes, there is a PBS Safety Net, but not all medications count towards it – talk to your pharmacist about your specific medications. Non-prescription items like Movicol and Coloxyl do not count towards the Safety Net either.

You or your family member may be on completely different medications and OTC products, but the overall picture is likely to be very similar. Lots of dollars for lots of items.

The picture above does not have everything in it, I just grabbed enough packets to populate a photo! In my forties, had you asked me for a Panadol, I probably would not have had any in the house. How times change.

I only have me to worry about. What of a young mother with my conditions? Finding those dollars could be very difficult. That patient may skip medications in order to feed her children. We need to improve our support of chronically ill patients, as I discuss in “Will Society Adapt? When? How?“

Footnote: In this article I have NOT addressed the issue of very expensive medications that are not subsidied under the PBS at all. Years ago a girlfriend of mine was spending $3,000 every six weeks for an infusion. She campaigned to get that medication onto the PBS, but by the time that happened, her savings were virtually non-existent.

Robyn Dunphy2 Comments
In hospital again

Changing Medications – What Can You Expect?

This article is to illustrate the challenges any patient MAY experience when changing medications. I am describing my personal situation: please take into account while reading ALL situations are unique to the individual. My aim is to help patients be aware that changing medications MAY not be smooth sailing. I also ask friends, family and colleagues, especially those managing staff, to be aware changing medications is not as smooth as simply opening a new bottle of tablets. Be supportive and understanding of the patient.

2022 seemed to be a year of gradual deterioration. I ended up in the emergency department (ED) a few times and was hospitalised late January 2023, I had an infected tooth extracted, I just wasn’t feeling good at all. In late December I suddenly realised it was almost the holidays and I was likely to have doctors taking holidays. I felt bad enough that I decided I needed to talk to my rheumatologist before Christmas. My rheumatologist squeezed me in on his last consulting day prior to the holiday season, December 22, 2022. His assessment was that my old medication (let’s call this Med O) had ceased working for me. I stress the “for me” – this is one of the individual aspects – it may keep working very well for millions of other patients!

He started me on a new medication that day. We’ll call this Med N (“N” for New). I was advised it is not good to take Med O and Med N together, I was to stop Med O. I was to start (more like continue, as I had already started) Prednisolone and Celebrex to manage the pain. With hindsight, I think Med O may have still been partially working, guesstimate here, at 40% or 50% efficacy. Because once I stopped it, I got worse!

Med O was a daily tablet medication. The mean terminal elimination half-life ranges from 9 to 14 hours, so the web tells me. So once I stopped taking it, there was no longer any lingering protection from Med O.

Most fellow patients reading this will be aware many medications do NOT start working straight away. I talk about this in Movement As Medicine, written five days after I changed medications. By that stage I had read the documentation and worst case scenario was I could expect improvement in six months! Best case scenario was maybe “some” improvement in about four weeks. That’s a big difference in timeframes. Both “some” and “improvement” are very open to interpretation, too.

Between Christmas and New Year I had a case of De Quervain’s tenosynovitis in my left hand, requiring an ultrasound-guided steroid shot as soon as my rheumatologist was back in the consulting rooms! Not strictly PsA related, but I’m sure there is always a connection with these things, like the hole drilled in my big toe bone!

By that stage I had only had the initial Med N injection. This medication’s schedule is first injection at Week 0, second injection at Week 4, third injection at Week 12 and every eight weeks after that. I certainly wasn’t expecting it to be doing anything much at the three week mark.

On January 20th I yet again presented myself to ED because just about everything was hurting, I’d loss strength in my hands (could not even wring out the dishcloth). I was not a happy adventurer. I ended up having three infusions of methylprednisolone over three days to try to knock on its head the inflammation raging through my body. For a few days afterwards I did feel better, but then started to slide downhill again. Called rheumatologist. His advice was to increase the Prednisolone to 50 mg per day, then taper off at a 10 mg reduction per week down to 10 mg, then stay at 10 mg per day. I’d never been on such a dose! Especially after three infusions! I had noticed breathlessness was an issue after I’d been discharged from hospital and once I increased the Prednisolone dose I noticed sweating and (the worst bit) palpitations at night. Every night. It was like my heart was beating in my ears. Very unsettling experience.

I have a nocturnal AV block. This means my heart skips beats every now and then. Let me tell you, when you have palpitations the missed beats are accentuated. My heart was pounding then dead silence. While it is only a few seconds, I still found myself anxiously awaiting the next beat.

I woke up on March 1st feeling decidedly unwell. Doctor time! GP Clinic squeezed me in with a different than my usual doctor. She listened to my symptoms explanation then looked at my rather elevated blood pressure and heart rate.

Blood Pressure

She wrote a letter to ED and told me to go home, pack a bag and head to ED. “Here we go again”, I thought. This was to be my sixth (I think, I may be missing one, I’ve lost track) trip to ED since October! While we both felt I was reacting to the Prednisolone, the obs were enough to need checking out. Bloods and a CT scan later I was sent home. I was not about to have a heart attack, so there was not much they could do. Yes, the picture above is me in ED on that day.

On February 28th I had reduced my Prednisolone to 20 mg a few days early because I was over the palpitations. While that had no effect (a bit early for the reduction to be reflected in my body’s behaviour) on the Tuesday night, Wednesday night I had no palpitations. I haven’t had any since that night either. Very happy about that!

Consider where I was at that point: Med N was still not being effective, and I was reducing the Prednisolone so the inflammation was increasing. Increased inflammation means higher pain levels. I was in a no-win situation at that point.

It isn’t all about the pain either. With my routines I can generally be pain-free by around 10:30 am, depending on when I get up, medication or no medication. It is the nature of the disease. The lack of energy and general feeling of unwellness was overpowering and that I can’t fix by 10:30 am. The effort required to do ANYTHING seemed too much. Having a shower? Tomorrow will do. Cooking? Toast was easier. Writing? The brain would not co-operate. I had to talk myself into walking, something I never have to do. Hydro pool? The effort required to get into bathers, drive there, get home and then shower just seemed all too much.

On March 9th I had my third Med N injection. Yes, technically a week early, but that is because somehow (do not ask) I stuffed up Week 4 timing. That’s OK, by the way, there is a window either side – I’d just confused myself. Cognitive impairment is worse at this time, naturally. I was still annoyed with myself.

FINALLY, March 11th (yesterday) I woke up and the malaise had lifted. All the sore bits weren’t sore. I could actually wring out the dishcloth – strength in my hands is returning. I am writing. I had been noticing gradual improvement over the preceding few days, but not wanting to count my chickens before they hatched, I’d been cautious. That cited six month timeframe was still floating before my eyes!

I still have swelling in various spots I can see and no doubt in spots I can’t see. I can’t see inside my shoulders, for example. I can see swelling in my hands still and there is fluid pooled under the skin on the top of my feet (like a bubble on both feet). The ankles are still swollen, but better than they were. I hope I’m safe to say we now have improvement: long may it continue!

So there you have it: just ONE example of how changing medications may not be as simple as just opening a new bottle of pills. If you or someone in your life is changing medications, please be gentle. Be understanding. Be aware it may NOT be smooth sailing. This has been an eleven week journey to just get SOME improvement from Med N. How fast improvement will continue, I cannot say.

Please note I have NOT addressed the question of adverse reactions to a new medication in this article, which is something to be aware of, of course. I’ve stuck to the topic of the process of change without adverse reactions. I have had an adverse event in the past, “When Medication Messes With Your Mind“.

* Med N was showing it was working on skin and nails though – so something was happening.

Robyn Dunphy5 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
Wellways

Interview by Brainwaves

I was recently Interviewed by Brainwaves of Wellways.

The podcast can be listened to at https://www.3cr.org.au/brainwaves/episode/robyn%E2%80%99s-story-chronic-illness

Suzie (@saysgrumpysuzie) drew this tweet below to my attention this morning, an aspect we touched on in my interview.

Robyn DunphyLeave a comment
Pain Scale

That Darn Pain Measurement Scale

Let’s talk about the pain measurement scale. Oh, this is a dangerous subject, isn’t it? I feel I am bound to upset someone!

Different people experience pain differently. Bottom line, it is subjective, there is no way around that. I suggest there is double subjectiveness happening when we try to “measure” pain. There is the patient’s subjective assessment of their pain, then the clinician’s subjective interpretation of the number provided by the patient.

Medical science has given us fantastic innovations. X-rays tell us very quickly if a bone is broken. We can quantify temperature and blood pressure. But not pain. Modern MRIs, CT scanners and ultrasounds let clinicians assess things their predecessors could only dream about imaging 100 years ago. But not pain.

When nurses and doctors go through their training, they aren’t at any point hooked up to a machine that inflicts level 10 pain. So if I say 10 to a doctor, how is that interpreted? I suggest if the doctor has experienced severe pain themselves, their understanding of what that 10 means is going to be better, irrespective of training, than the understanding of a doctor who has experienced nothing more that a vaccine injection or a blood test. Yes, of course lectures cover “bad pain is really, really bad” and they see patients in excruciating pain after car accidents and fires and so on. I’m not saying they have no idea: but it is different to personal experience.

Neither, of course, are patients ever “instructed” via a machine “this is a 10, for future reference”.

For every single one of us, the zero is about the only value on that scale we can all categorically agree on.

If the most serious pain a patient has ever felt has been the prick of a blood test, a broken toe is going to be, in comparison, quite painful. We assess pain severity based on our personal experience because we have nothing else to go on. Whenever I tell a clinician my pain is an 8 or above, I qualify that statement with “for me a 10 is waking up from my hysterectomy”. I’ve related before about telling my GP on one occasion my wrist felt like someone had stuck a scalpel in it and when I saw the look of “oh yeah, right” on her face I followed up with “I stuck a pitchfork right through my foot once”. Her response was, “You know what a puncture wound feels like”. Yep, I do. My foot ended up almost the size of a football. Not fun.

Yet the scale we have is ……. what we have, at this point in time. I like to think that at some future point in time we’ll be able to measure pain using some form of medical technology. I’m completely theorising here, but maybe image brain waves or tap into nerve activity in some way.

Anyone understands that undergoing surgery, being “sliced & diced” as I call it, is going to be painful. so we have anaesthetic and let the patient “sleep” through the procedure. So even if a person has undergone surgery, they didn’t actually feel it. Post-op? Well, I know from my own experience that can either be quite painful or virtually pain-free. My bilateral foot surgery post-op recovery, for example, was virtually pain free. That was a big yippee from me, let me tell you.

Childbirth is painful. Has anyone seen those clips of men subjecting themselves to simulated contractions? Whip through to about 16:40 if you want to see just the reactions.

Maybe all clinicians could be subjected to something similar as part of their training. It is OK, I’m not serious – well, not really anyway.

A doctor said to me recently, personally experiencing pain (the doctor had hurt their back) gave a bit of a new perspective. I didn’t mean to, but I did laugh, because while I’d been thinking of this article since I was last in hospital and took the picture of the pain scale featured here, I didn’t have much experience other than mine own, or my GP’s and my chat about childbirth, to use as illustrations! That one sentence essentially supported what I am saying: experiencing pain personally provides an otherwise only imagined experience. Reminded me of a situation over forty years ago in a maternity hospital. I was lying in my post-natal ward, a new Mum arrived in the bed next to mine. Seemed very distressed. Not the usual new Mum demeanor at all. Somewhat concerned I went over to her and asked if she was alright, could I call a nurse. No, she told me, following by, in hushed tones, “I’m a midwife. I can’t believe how tough I’ve been on my patients.” That’s not verbatim, my memory is not that good after forty-odd years, but she did go on to talk about, yes, you got it, pain. Her perspective was now rather different. She swore she would be a much better midwife in future.

Even if we could technically quantify pain with a machine, that would not completely solve the problem. We all have different pain tolerances. By that I mean, if we could use a machine, it might determine that the pain is technically a 5. One person with a high pain tolerance may experience that as only a 3, while another may experience it as a 7. Think about sweetness. One teaspoon of sugar is one teaspoon of sugar. Yet to one person a teaspoon of sugar in a cup of coffee or tea would be horrendously sweet, while another would need another teaspoon. Absolutely nothing has changed about the sugar though. This is where we could run into problems in relation to pain management/pain relief. “Your pain measures as a level 5, this is what you get to reduce your pain”. That may not work. Might be too much or not enough, depending on the person. Not to mention other reactions to medications. Given the typical dose of morphine, another woman I know and I have quite different reactions. She hallucinates and sees spiders eating her legs, I’m up making coffee. Consequently she was only given the “typical” dose once.

Then there is the time factor. I can cope with my pain for a few days: after a few days, let me tell you it starts to get VERY draining. Tiring. Our resilience drops. Once the resilience drops, the pain may feel worse, even if it actually isn’t any more severe than it was the day before. With my current little (OK, not so little) issue, yes, I have resorted to the big guns on a couple of days this week, and probably will do so again before the new medication kicks in – assuming it will kick in. Eventually.

In my particular case, the pain rises overnight, is worst when I first wake and I can usually get rid of MOST of it by 10:30 am. The rest of my day I can do the things I need to do: walk, swim, weight training.

My brother-in-law, different conditions and much sicker than I am, has been on ever increasing serious pain medication every day for several years now. I am relatively lucky in comparison. Even so, none of us like pain, whether it be a pitchfork through the foot, post-op pain, or chronic pain. Although I juggle a few conditions, only one of those causes me pain. Other people are not so lucky, they have multiple painful conditions.

To further complicate the pain issue, what of those of us who do not feel pain when perhaps we should? I’ve mentioned that before too, as I am one of the patients considered to have some wonky pain sensors. Not all, by any means, just some. But this poses other risks, in that I do not always realise something is “bad” when it actually is, such as the infected tooth discussed in that linked article. Neuroplasticity is a major field I am not going to delve into in this article, however, wonky wiring is not an undiscussed topic. My right (unoperated) knee actually fits an example given in the below article: that knee is wrecked on imaging, but I am not in pain from that damage. The below link is to a story by Paul Biegler, author of “Why does it Still Hurt”.

Why do some people suffer constant physical agony from their injuries and conditions, while others with identical problems remain fine? The explanation may lie in the brain – and its wonky wiring.

“The brain is responsible for what we feel, but it doesn’t get it right all the time.”

https://www.smh.com.au/national/hurting-so-good-the-pain-in-the-strain-may-be-mainly-in-the-brain-20221205-p5c3r7.html

My suggestion to fellow patients is to provide some comparative or functional context if you can when describing your pain to a clinician. I use my hysterectomy: that’s not a option for everyone! Childbirth can be a useful comparative, depending on your audience (female doctor or nurse who is a mother, for example). Functional descriptions can be useful, as in “I cannot lift my arms above my chest, the pain is too severe” or “I cannot drive the car” but I find them less so. Recently I couldn’t open the coffee jar. I needed two hands to lift the milk out of the fridge. I could not put on a t-shirt as the shoulder movement required to achieve that was too painful. I should perhaps add, (usually) if I sit and do absolutely nothing, nothing hurts. That’s the nature of my disease. As soon as I move something – THAT is when it hurts. So it is a different pain pattern to that which will be experienced by many readers with different conditions.

The pain measurement scale is what it is at this point. Until science finds a different/better way, we all, patients and clinicians, have to muddle through with what we have, as imprecise as it is.

Robyn DunphyLeave a comment