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.

Panadol Osteo$10
Palexia SR$7
Palexia IR$20
The magic biologic$7
Enstilar Foam$7
Dymista (nasal spray)$49
Zyrtec (for hayfever)$30

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.

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.

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.


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:

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: Ph: 13 11 14

Beyond Blue Ph: 1300 224 636

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

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!


Interview by Brainwaves

I was recently Interviewed by Brainwaves of Wellways.

The podcast can be listened to at

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

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.”

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.

Symptom Diary

Symptom Diaries

Oh, you are lucky today! Both a video AND text – choose whichever you like!

I first heard about the concept of symptom diaries about six years ago. I had moved and was looking for a new GP. A friend had recommended the clinic I am still with: I was calling to make my first appointment. As is often the case, I was placed on hold and while listening to the recorded information I heard: “Bring your symptom diary.”

To me, at that point in my journey, the concept of a symptom diary smacked of hypochondria and that horrified me. However, we live and learn and I now recognise the value of a symptom diary and I keep one.

A symptom diary allows you to provide your doctors with accurate information about your condition/(s).

  • What happened
  • When things happened
  • Quantification of improvements or otherwise
  • Pattern analysis
  • Trend analysis

Let’s look at examples of each of the above.

What Happened: Many chronic illness patients, myself included, experience a degree of cognitive impairment (otherwise referred to as “brain fog”). This means we forget things. If we forget things we don’t tell our doctors and they are then operating on limited information. We don’t see our doctors regularly – it can be months between visits!

When Things Happened: We may remember what happened but forget when – and when can be important especially if the patient is changing medications or has (as many of us do) multiple conditions. One specialist may change a treatment that may impact a different condition. I remember back in 2014 my rheumatologist wouldn’t start me on arthritis treatment until we had progressed some way along the path of controlling my thyroid. There are often relationships between conditions.

Quantification: I can say to my doctor “I’m losing strength”. While somewhat useful, it is much more useful if I can quantify the loss. If I can say to my doctor I was doing 140 kgs on the leg press but two weeks ago I had to drop 10 kgs and again this week another 10 kgs. Or walking: if I have recorded a drop from being able to easily walk 2 kms in one session but am now struggling to walk 1 km in a session, that quantifies the change over time.

Pattern Analysis: We may find something happens on a regular basis IF we are recording it. Let’s say we find we are really stiff and sore every Thursday morning. If we know it is every Thursday, then we can look at what are we doing on Wednesdays or Tuesdays that may be triggering a flare on Thursdays. Without recording it, we may not even realise it is every Thursday.

Trend Analysis: Recording allows us to see if we are progressing, stable or our condition is worsening. It may give us early warning. On the basis a stitch in time saves nine, catching something early can be a good thing.

Even if your doctor never looks at your symptom diary, it provides you with the ability to provide good information to your doctor. I have hard copy diaries, yes, I write in them in old fashioned cursive! Yes, I swear. I also use the Notes app on my phone for some things. Find what works for you.

As I have said before, we are the foot soldiers in our health war. Our doctors are the commanders back in HQ, they don’t see what happens to us each and every day, they are depending on us to submit a comprehensive field report!

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!

Covid-19: Worst Case Scenario Ignored

My random Tuesday thoughts: we are ignoring the Worst Case Scenarios. We are not planning ahead.

My previous writing on Covid-19: Covid Is Not Over

A related article re how society deals with the existing chronic illness population, which readers may find useful: Will Society Adapt? When? How?