The Tangled Web of Chronic Illness

Recently I described a less than optimal week which had included a fancy nuclear med stress test of my heart. This week, which is not yet over, has been another WTF? week in the life of this chronic illness patient. I’m sharing for several reasons:

  • For friends, family & co-workers of other chronic illness patients, to show “what happens”, enhance understanding
  • To highlight the complexity involved and why GPs are so important in our health management (wary of the NSW pharmacist prescribing proposal in cases like mine)
  • To illustrate the October and November episodes may well be related to each other – and to a tooth
  • Dental care needs to be included in Medicare

This article assumes the reader is not new to my writing – if you are, click on the included links for the backstory. One piece of information that may be missing from linked articles is back in May/June of this year I had a fever for six weeks. Continuously. No idea why at the time. Bloods, CT scans, nothing indicated why I had a temperature. Did the merry-go-round of my treating specialists: GP -> gastroenterologist -> rheumatologist -> endocrinologist. Then out of the blue I got a very sore tooth. Dentist prescribed antibiotics, temperature disappeared. I don’t know about you, but I suspect I had a painless tooth infection for six weeks. Just tuck this paragraph in your memory banks for later in today’s story.

So we roll forward to November 10. I had a painful tooth – different tooth this time. I also had flaring hands from the psoriatic arthritis. Skin was flaring on the left arm. I stopped wearing my partial plate as it “clicks” onto the painful tooth, I hit the Osteo Panadol. November 11 (Friday) I woke to the flare worsening. I needed pain relief. I took Osteo Panadol, Tramadol and Prednisolone (as per previously established protocols). I also took my temperature. Low grade, 37.4 (but given at my age my normal temperature is about 36.6, it was a little higher than I’d like). Me being me, I thought if this is no better tomorrow, I’ll call my GP. Good plan, right? Not all plans go according to plan.

Late in the day, I developed a rather nasty pain under my left scapula. I pulled out the foam roller, that’ll fix it! No, that didn’t work. Spikey ball? Minor relief. Massage ball? Also, technically, a fail in this case. Sticking to my plan of call GP tomorrow, I gave up on curing the pain, took pain relief and went to bed. In the middle of the night I woke up, as one does, to go to the toilet. Just one minor problem: I couldn’t lift myself up from the supine position without the pain under my left scapula wiping me out. I spent some time figuring out how to use my right side to get myself out of bed without contracting any muscles on the left. Yay! I’m standing! Woo hoo! Phew! Did what needed to be done and had the same issue laying back down. But I’d figured out what movement I could and couldn’t do, so I managed.

When morning came, no improvement, same problems. Called GP clinic, the advice was go to ED. So I did. One aspect that amazed me was this: despite the pain in trying to sit up or lay down, I could do my bra up with no problem. Our bodies are weird or amazing, depending on your perspective. Which ED to go to? The private hospital ED would cost me $480 out-of-pocket as the safety net threshold only applies to out-of-hospital charges! I decided the public hospital ED fitted my budget better. I trammed to ED. Mentioned to attending doctor about the tooth. I suggested maybe I have a tooth infection that is driving a PsA flare. Doctor looked at tooth and was very concerned about how loose it (now) was. This was considered a very likely scenario. Plan of action was I would go to dentist on Monday to see about tooth. ED gave me five Palexia to get me through to Monday if needed. I went home. By then the shoulder was miraculously perfectly fine. I rested, as I figure that was probably a sensible approach to the situation. I could almost hear my GP saying, “Just rest!”

By Sunday, I was going stir crazy from resting. It is, as we know, not really my style. I decided a one kilometre walk around the block was needed. As I walked, I felt a twinge in my right hip flexor. Uh oh. I also felt a little dizzy and had to lean against a fence for a few seconds. Flash back to my October event right there. It is a very minor twinge, nothing even remotely severe, I figured it would pass, just my body being flary given the tooth infection. Looking back on my notes though, my temp that morning had been 39.1 and I’d woken in a freezing/boiling cycle with a sore hip. Had forgotten all about the hip until I revisited my notes just now. Notes are kept for my GP, symptom diary. Useful, by the way, as we forget things. How did I forget I’d woken with a sore hip that morning? Obviously it didn’t last long, replaced by the hip flexor specifically, later in the day.

I was hopeful, wasn’t I? 2 am Monday I woke up to go to the toilet. I couldn’t move my right leg due to the pain. I lifted my leg off the bed with my arms so I didn’t have to contract leg muscles, grabbed the walking stick that lives beside the bed for just such events and got myself to the bathroom and back. Now, half of me was saying, “this is just another flare” and the other half of me was asking “but what if it isn’t?”. I already know from my October event that if I called Nurse On Call, given my history, they will call an ambulance. I figure I might as well save the time and call them myself. We decided I was not P1 (very reasonable), so I was allocated to the queue. While in the queue I had to somehow get to the front door to unlock it. While I didn’t time that journey, it felt like half an hour and I had to rest on the couch before heading back to bed. And find a nightdress. Ambos don’t need naked patients. And the recording had said have a mask on.

Ambos arrived and decided to do Virtual Emergency Department. That doctor advised “take the patient to ED”. So that’s what happened. I got my first try of the “green whistle”, that was exciting! Hey, we have to look for the positives and innovations are positives! It was pouring rain as I got in the ambulance, we all got wet.

Kind of a rinse and repeat of Saturday with a few extras thrown in: x-ray of leg/hip, x-ray of teeth, antibiotics prescribed. I called my dentist from ED, but dentist was closed. Thankfully, dentist called back and booked me in for Tuesday. CRP had jumped from 28 on Saturday to 85 on Monday. ESR was now 61. Definitely something going on. Tooth again got the blame. Has this happened before, I was asked. Actually, aside from Saturday, yes, it has. October 25 my wrist was so sore I couldn’t even cut cheese. November 04 my hands had been swollen and sore, but I’d put that down to a reaction to my second Shingrix vaccine. November 25 I had woken with an extremely painful left leg (probably ITB). All these things had resolved within 24 hours though. Suggestion is made that perhaps I’ve had a low grade tooth infection for a few weeks but as I didn’t have pain in the tooth, I didn’t realise.

That’s when I first thought back to my October event. Now, as luck would have it, I had a gastroenterologist appointment for Monday afternoon. From ED I called to reschedule. That appointment happened yesterday. My first question to her was “Can a tooth infection upset the gut?” Yes, was the answer. Her advice, on hearing the story, is we get the tooth sorted first, manage the gut in the meantime, then reassess. After all, the gut was determined to be the cause of my October event, but now we are considering the tooth was causing the gut to misbehave.

Am I tearing my hair out? YES! I’m over it! I’ve missed most of my exercise routine for the week, I’m losing a tooth on Monday and that will require my partial plate to be remodelled after the extraction site has healed. I now realise we may have all been chasing down wrong paths for a month and that is no-one’s fault – it is a fact of life with us complex comorbid patients. An elevated CRP isn’t a specific indicator, nor is an elevated ESR. I didn’t realise I had an infected tooth until late last week so I couldn’t tell anyone I had an infected tooth. Also, we do get used to waking up with a sore hand one day or a sore foot another day – we often pay little heed to these “glitches” – they become our normal. Except when they aren’t.

My GP rang proactively arranging an appointment for me for the Tuesday evening. I am sure she stayed late to fit me in. She wanted to make sure we now had all our ducks in a row and I love her for it. I’ve also written to my rheumatologist to bring him into the loop, although there’s not much he can do about teeth!

To top it off, at this time there are shortages of antibiotics. So I’ve got a single course of ten tablets. Let’s hope that is enough to ensure the local anaesthetic works! I needed two courses to clear the May/June tooth infection.

It isn’t over – yesterday the knuckle on my right forefinger decided to develop a bump. Redder than my camera captured. Interestingly that particular knuckle has a piece of cup stuck in there – a prime PsA attack site, therefore, I think. It’s OK, it too will subside. Once the tooth is gone. It seems possible the infection has also impacted my sinuses, so I’ll be interested to see if my blocked nose at night issue resolves as well. That would be good!

For those wondering why would a tooth infection cause PsA flares, it kinda goes like this. As with many treatments, my treatment for PsA suppresses the immune system, so not only are we more susceptible to infections in the first place, we are also less able to fight them off. The quote below may be scary reading to novices, but we live with it. Note the higher risk of developing shingles, which is why I had the shingles vaccine. A normal, healthy person may have fought off the tooth infection without batting an eyelid.

Serious infections. RINVOQ can lower your ability to fight infections. Serious infections have happened while taking RINVOQ, including tuberculosis (TB) and infections caused by bacteria, fungi, or viruses that can spread throughout the body. Some people have died from these infections. Your healthcare provider (HCP) should test you for TB before starting RINVOQ and check you closely for signs and symptoms of TB during treatment with RINVOQ. You should not start taking RINVOQ if you have any kind of infection unless your HCP tells you it is okay. If you get a serious infection, your HCP may stop your treatment until your infection is controlled. You may be at higher risk of developing shingles (herpes zoster).

https://www.rinvoq.com/

The existence of an infection though, can stir up the immune functionality we do have left and then PsA sees a crack in the wall and tries to break through. That’s a very lay description! I’ll never forget being told that my biggest Covid-19 risk factor was considered to be my underlying inflammatory condition. PsA and Covid-19 could have quite a party.

Let us look at the current news topic of pharmacists prescribing and the argument for Dental being covered by Medicare. Based on my symptoms, I could have many things and I have a complex medical status to consider prior to any treatment. I am knowledgeable about my own medical situation, but many patients are not and the knowledge and experience of the GP is invaluable. I have great faith in my pharmacist – I seek out their advice re drug interactions and what med to not take with what other med every time. I’m not as confident a pharmacist has the medical knowledge to safely and effectively diagnose me and then prescribe the right medication for me. The second point, dental coverage, should be obvious. My teeth have caused considerable angst and pain and are costing me dollars other patients may not have. It is false economy to not ensure we look after people’s teeth. Teeth lead to many other health problems, some extremely serious, which cost a lot more to treat that fixing a tooth initially.

In closing I would like to emphasise none of the above is in itself, for me, medically serious. My son-in-law is fighting leukemia – THAT is medically serious. That is life threatening. My challenges have been been painful, probably costly to the health system and certainly inconvenient. Yes, the outcome could theoretically (based on symptoms) have been more serious, but it isn’t. However, all chronic illness patients live with this complexity and disruption to our lives reasonably constantly. And every day we grow in number. THAT I discuss in detail in Will Society Adapt? When? How?

We All Get Those Weeks

Perfectly healthy people get “those weeks”. Chronically ill people get them too, even us retired ones. My purpose in sharing my week is to assure other chronically ill people, you are NOT alone. Things just go nuts sometimes.

For a few weeks I had been experiencing a recurring tightness in my chest, off and on. Then I was getting spasmodic nausea episodes again. Occasionally I was feeling lightheadedness. My gut feeling was along the lines of my actual gut playing up, BUT to be on the safe side, I called Nurse On Call. Because of my medical status and my symptoms, the nurse called an ambulance, so I ended up in the Emergency Department (ED). This was Thursday, October 20.

Why did I call Nurse On Call? Well, last time I tried to walk off left upper quadrant abdominal pain and ended up taking myself to ED, my GP was not overly impressed with my self-care solution, so I thought this time I’d be more sensible.

Even so, I felt like an absolute fraud – I was convinced someone else needed that ambulance more than I did. In ED they did the appropriate blood tests, which all were, thankfully, negative. They organised a NM Myocardial Perfusion stress test for the morning to categorically rule out my heart as the cause of my symptoms. I was allowed to go home.

Specific grabs from the paperwork

Prior to my trip to Nuclear Medicine the next morning, I prepared my breakfast (I had checked I didn’t need to fast) and made my coffee. I then re-read the paperwork (luckily). For 24 hours before the test, NO caffeine. The cup of coffee went down the sink. Water it was.

The stress test went without a hitch and despite my known nocturnal AV block, my heart is functioning very well.

The general consensus was at this point back to my gut (after we had discounted gall stones on the basis I have no gall bladder). So I have doubled my Somac (Pantoprazole) as per previous gastroenterological advice.

Missed my weight training on the Thursday. Not happy. Given I now had the heart all clear, I was back lifting weights on Saturday. However, I was modifying my workout because that morning I had woken up with VERY painful hands and fingers. Took 15 mg of Prednisolone per my rheumatologist’s instructions for situations like that. If it wasn’t one thing, it was another. The inflammation in my hands was not going to impact my lower body!

I took Sunday as an active rest day.

Yesterday (Monday) I lost my grip on the coffee jar. It hit the coffee mug. The coffee mug hit the floor.

My coffee mug!

Later in the day I went to cut some cheese. Cheese is soft, right? My right wrist was so painful I could not cut the cheese. The wrist wasn’t sore just hanging around doing nothing, but I could not cut cheese. So 15 mg Prednisolone again this morning (yes, could have taken it last night, but it interferes with sleep, so this morning it was). THIS time I will take it for three days.

Also yesterday I had to venture into dangerous territory – public transport. You see, as well as the above, I had noticed my gums were receding slightly. I needed a trip to the dentist and public transport is the only real option as parking is a nightmare in the city.

I’m masked for public transport!

Virtually no-one was masked. Going in wasn’t so bad as there were not many other passengers: coming home was a crowded carriage and I counted only two other people wearing masks and one of those two was clearly a health care worker. Now mandatory isolation has been done away with, I can only imagine how many Covid-19 infectious people might have been on that train. Hence the full force mask! That is not a typo, by the way – I do mean full force!

To digress slightly, I have been working with a team on a petition to reinstate mandatory Covid-19 isolation. My suddenly having these personal health glitches was not helping as I was not contributing as I wanted to. As you are reading this, please visit, read, sign and share the petition! We have over 12,300 signatures so far!

All the while my guts were not exactly behaving, but I’m not going into details, that is more than enough information! As I am typing this, I have needed another nausea wafer, but at least there is improvement from last week!

Today it was back to the GP to confirm I am doing all the right things. Then it was off to the gym, again being careful of my hands and adapting my workout. When I came out of the gym, I looked as red as my lipstick, but sadly the darn camera did not capture the redness! I was annoyed at my camera!

After my workout

Despite all of this, I have still kept up my step count, except for the Thursday. I’ve still found flowers, including the great foxglove which reminded me of my childhood.

My walking flowers

So that is my week so far. Some of us will get much worse weeks. After all, I’m just juggling sore hands and a grumpy gut. Even when “mildish”, these weeks can be disruptive. I’ve had difficulty concentrating. I haven’t got the things done I wanted to do this week. I’ve been very grateful I am retired as the fact I’ve been below par hasn’t impacted work colleagues or work deadlines. I still managed to paint my nails (of course).

To friends and family members of chronically ill people, please be aware that even though we may essentially have our conditions under control, well managed: we will still have “those weeks”. Make your patient a cup of coffee, take them out to lunch if they are up for it. Be gentle.

Reminder: this also links into the topic discussed in “We Don’t All Look Sick! Invisible Illness“. Please read that too if you have a moment.

Flaring

For the uninitiated, flares are what we chronic condition people call the times our condition (or conditions) decides to remind us it exists, usually in no uncertain terms.

Barb, who, like me, is a complex comorbid patient including psoriatic arthritis, sums up flares succinctly!

The unjoys! The phrase “Oh the joys!” is in common usage, the implication being something is not actually so joyful. But I love this new word. For me, it hits a home run.

I had one yesterday. While the experience is fresh in my mind, I’m writing about it. We tend to get used to them, they become just part of our new way of life, while healthy people can find the flares of others confronting.

If you are friend, family or colleague of a chronic condition person, or you are new to this chronic world, hopefully I provide some insight to “what happens”. Everyone is different, what I describe is specific to me, my conditions and my current circumstances, but should give readers a feel for flares generally. Flares can be long or short: once my right wrist flared for about eight hours, then was fine. No rhyme nor reason.

Yesterday’s flare was different. For a start, it was whole body, not just one joint.

I now realise it started on Wednesday. I was driving to the office and my upper arms were sore when dressing and driving. Sore upper arms usually means shoulder inflammation. Nothing too bad, but I did take panadol osteo to see me through the day. Driving home from the office that night I felt nauseous and sleepy and nearly drove through a red light. Not good.

Thursday was a little worse, more areas were sore. I was WFH that day, so I managed. Even my total knee replacement scar felt tight, stretched and tingly. This was a new thing. The joints at the base of my thumbs were sore. My right (unoperated) knee was painful. My right hip was grumpy. You don’t need the whole list!

I woke up Friday morning in a full flare. Not only did I have many sore bits, I had no energy. I had to work, because…. deadlines. At least I was working from home though. No meetings scheduled. I certainly would not have gone into the office, but I felt I could manage the most important tasks in solitude at home. I resorted to panadol osteo and a stronger pain med to get me through the day – I hoped.

Yesterday is the first time ever I have worked in my dressing gown. I am the sort that puts on the lippy and mascara every day, working from home or not. For me to not even get out of my dressing gown is an indication of how crap I was feeling. Healthy people reading this may be horrified at this admission – chronic people will be nodding their heads and thinking, “Oh, yes, know that feeling well.” I did 1,172 steps for the day, between my office and my kitchen mostly.

It is very hard to explain how awful it actually feels. I liken it to possibly feeling as if you have run a marathon – at least that is how I envisage a marathon runner may feel at the finish line. It is only the start of the day, but you feel done already. Like, literally, DONE! That’s before any pain is taken into account. Or maybe the old “run over by a truck” phrase is applicable.

I did manage to get through the work day, almost – I finished slightly early. I doubt my productivity was any way close to normal, but I got some important deadlines met. I will probably work a few hours this weekend to catch up on other tasks. If at all possible DO NOT DO THIS! If you are flaring, REST. I’m setting a bad example here, I know that – but my example also underlines the fact sometimes we are caught between the devil and the deep blue sea.

After I finished work I sat in an armchair and my lumber spine decided to be excruciating. It had, I’ll admit, been building as the day wore on, now it was awful. No idea why – my lumbar spine hasn’t been a problem since 2017 (except for changing the bed linen, that irritates it). Pain medication was required, most definitely. Then, I got stomach pains. My eyes were dry and irritable. Like, what next?

This morning I woke up feeling absolutely fine! Made myself a lovely cinnamon rolled oats and pink lady apple breakfast, have been for a 1.6 kilometre walk, had a coffee at my local café. After lunch I went to the gym for a strength training session. The only slightly sore bits are the joint at the base of my right little finger and only if I hyperextend it, plus my soon-to-be-operated on toes are a bit off (but that’s understandable). I have energy, I feel perfectly fine.

The flare is over, just like that. Gone.

What causes flares when we are on a stable medication that is working and we are doing all the right things (eating properly and sleeping, hydrating, exercise)?

I will never forget my rheumatologist saying to me in late 2014, “Get the stress out of your life.” Great advice, but easier said than done. While the evidence is pretty conclusive that stress exacerbates many conditions and causes flares, we still have to live life! Earn money to pay the bills.

If I stand back and look at what has been happening in my life during the last few weeks there are several factors that alone may not be a problem, but the culmination of the stress of each has resulted in this flare. If you are flaring more than usual, take a look at everything that is going on in your life in the time period preceding the flare. In my case, right at the moment:

  • Pending surgery, with a late change of surgeon
  • Late change of the actual surgery procedure (extra stuff)
  • Teaching a relief staff member to do my role while still doing my role
  • Usual work deadlines
  • Fitting extra pre-op tests into my schedule
  • Mountain of pre-op paperwork
  • Lack of exercise due to work hours and therefore internal battery depletion
  • 42 minute phone call to Medicare – even things like that add to the stress load
  • I’d let my dietary protein drop while distracted with the above concerns

There is stress related to each of the above. Any one item alone is probably not an issue: add them all up and the body goes “What are you doing to me????”

Realistically we can’t avoid these life stressors. We can’t necessarily spread them out over time to minimise the impact on us, sometimes they just all come together. I haven’t really flared for years. You might ask what about the knee surgery, did I flare then? No, but the list was smaller then. No late change of surgeon, no late change of proposed procedure, I wasn’t working at the time so no work-related pressures. I was getting exercise. Sure, I was unemployed and THAT alone is hugely stressful, but I was able to mentally put that on the top shelf out of sight while I concentrated on the knee. I knew the knee rectification was important in order to be able to get a job – I prioritised.

There is no way I could have avoided the culmination of the above stressors, it is just the way life has played out over the last week. I saw the new surgeon on Thursday, had to digest his unexpected news about what needed to be done, fit in an MRI on the Saturday, phone consult and decision on Tuesday, flare started Wednesday, Friday full conflagration.

Surprised I feel so fantastic today after feeling SO bad yesterday. It really is like getting into a brand new car: today I am driving a brand new car! Yet that is what flares can be like and why it can be hard for healthy people to understand or, worst still, easy for assumptions to be made about “it is all in your mind”. No, it isn’t: it is what happens physically.

If you are friend, family or colleague of a chronic person, including healthy looking chronic people, please be compassionate. Be supportive. We don’t like these flares, we don’t have them to inconvenience others!

If you are a chronic condition person, please share any advice or your experiences in the comments.