If you’ve not read the start of my journey for answers you can read it here – A sickly adult searches for answers.

After years and years of searching for answers and finding none, I was defeated, disillusioned and just plain exhausted. Funny, a person with chronic fatigue is exhausted! I had also changed a lot in my life, going from working full-time in the city, which involved at least an hour of travel or more a day, to working closer to home. This seemed like a great decision at the time. Unfortunately, I went from one emotionally and mentally draining job to another, so even the reduction in travel time didn’t change my energy levels. I was spending my weekends mainly on the couch, now with an adorable puppy to keep me company. Really he got me off the couch cause I felt terrible when I didn’t take him out for walks. 

I decided to look after my mental health, drop into a part-time role at a new company, and take on some freelance writing work. This did amazing things for my mental health, not only because my new company was terrific. My old company also gave me regular freelancing work, which was amazing because I got to keep myself in the business without the pressures of the business. I had found an outstanding balance in work and decided it was time to refresh my search to help my physical health. 

Then the pandemic hit…and well, the world went to shit. For the first few months, I was lucky and maintained my workload, but then my old company had to cut down on freelancers. I had been relying on them for half of my income, so I struggled a little, but I found some new clients with a bit of searching. I actually found a lot of new clients, which was great because, before the end of the year, I’d lost my part-time role. My mental health was suffering like everyones. Even though I was in an excellent position to move to full-time freelance, it was still a struggle. 

Something new is on the horizon.

I used the pandemic as an excuse not to find a local GP in Dee Why, which meant any plans to stop my search for what causes my chronic fatigue was abruptly stopped. My new working conditions meant I could manage my time myself and no longer needed to “fight through” the fatigue. If I needed to take multiple breaks throughout the day, I could. I could even work from the couch and nap mid-day. I’ve never been a napper; even at my worst fatigue, I have never been able to sleep during the day. Well, when severely hungover and after no sleep, at night I can…bit rarely to never just because naps. I envy nappers. Please enjoy your naps!

As the pandemic wore on, my mental health worsened, which also saw me caring less about being healthy. Ordering in rather than cooking for myself, I did cook for Wally because he deserves it. I’d found a fantastic group of dog friends, but there was drama there. But the drama was a blessing cause it meant I no longer had to interact with people I really didn’t like and drained me more than energised me. I went back to the couch potato and blamed it on the pandemic. 

Then in April 2021, things changed that would change my life forever.

Journeying to a diagnosis

In late 2020 after months of working from home at my horrible office set-up, which was ergonomically awful, I started having back and shoulder pains. I was surprised that my attempts at ergonomics at home caused the pain when years of slouching at office desks in non-ergo friendly ways didn’t, but I was also older. I’ve always had bad posture. I was grateful to my part-time job that when we shut down the office, the boss allowed me to take an office chair as the chair I had at home was outdoor furniture. 

I worked on getting my desk set up as ergonomic as possible, with the chair, an ergonomic keyboard and a mouse. But my back, neck and shoulders were still in pain. I then spent the summer of 2020-2021 at my mum’s house. If you don’t remember, there was a lockdown on the Northern Beaches, and I got out before the virus blew up, so I was staying the hell out until it was under control. My bed at my mum’s is quite old, the mattress could probably do with replacing, and although I took my pillows with me, I was still suffering. I woke up during the night in pain. I was covered in pain creams and using heat packs, all of them.

All of this is to explain why in April 2021, I didn’t get too worried about the hand pain I was experiencing. I assumed it was an extension of the back, neck and shoulder pain. I used heat and cold, strapping, and anything to manage it. It didn’t help; I couldn’t open car doors without pain because I couldn’t put pressure on my hands. My mum told me to go to the doctor, but I didn’t have one on the Northern Beaches, so I was hesitant as I felt I knew what was wrong. Also, pandemic induced fear of being around sick people.

I’m actually quite good at strapping my hands when needed. I had a lot of sprains and strains in my small joints (hands and ankles) growing up. This could have been an indicator of what was coming, my weak ankles and wrists, or it could just be because I didn’t do a lot to keep them strong. The strapping, however, didn’t work for this pain. In fact, it made it worse. The pain was more in my fingers than my wrists, and I felt I had to strap them tight to give them support. However, strapping them the way I did caused pain as it squeezed the fingers together and possibly cut off circulation. The pain eventually went away, primarily by resting my hands when I could. 

I had done some investigating and found compression gloves which seemed to help when the pain did pop up, so I felt a doctor wasn’t needed. Then a few weeks later, I went to a daylong event where I took notes inside a cold barn. I started the day without much pain in my hands. I was wearing compression gloves and ended the day unable to move my hands without pain. The next day I woke up, and the pain was worse. Even putting pressure on my palm by poking it would cause such excruciating pain that I felt nauseous. Trying to bend my fingers caused pain leading to nausea. All I could do was lay on my couch with my hand resting in a specific place on my hip. The pain was overwhelming. 

I contacted a local doctor the next day, and I found one specialising in chronic conditions. My mum mentioned arthritis, so I figured someone who specialises in chronic conditions would understand. I could also go back to her for my chronic fatigue. 

I explained my symptoms to my doctor, and she said straight away, “I think it’s rheumatoid arthritis, but we’ll do the blood tests to confirm.” So I got the blood tests done and the standard blood tests because, well, I hadn’t been to a doctor for a few years. The doctor also asked about my family history. I suck at family history at the doctors; we really need to remember to get that information as adults. I knew my nan had some form of arthritis, but only because she had joint replacements. 

Finally an answer

The blood tests came back positive for rheumatoid factor and with high levels of C-reactive protein, both of which indicate rheumatoid arthritis. I also found out that my nan had rheumatoid arthritis, as did my uncle, aunt, and possibly another aunt, so that family history was definitely there. I basically had every possible indicator that I had rheumatoid arthritis, at least in the early stages. Rheumatoid arthritis, or RA, is an autoimmune and inflammatory disease. Your immune system attacks healthy cells in your body by mistake, causing inflammation (painful swelling) in the affected parts of the body. RA mainly attacks the joints, usually many joints at once.

Now a GP can’t give the diagnosis officially. That needs to be done through a rheumatologist, so the GP got me a referral to get that diagnosis. I stupidly didn’t ask for some prescription anti-inflammatory pain killers for when the pain in my hands flared up. Oh, I also had developed some pain in my feet or toes, to be more specific, which trying to manage pain in your toes is so hard. 

I booked into the rheumatologist at the first available appointment. It was July 2021, so Sydney had just gone into lockdown, and the rheumatologist wasn’t taking appointments until after they’d hoped it would end…hahaha. Thankfully the extension of the lockdown didn’t cause the cancellation of my appointment, so I was able to go for my first consult. I explained the whole pain journey I had been on to the rheumatologist, and he explained that just because I had the blood indicators and family history doesn’t mean I will 100% have rheumatoid arthritis. You see, there are people with this illness who don’t have any of the indicators or family history I have, and there are some who do have them but don’t develop the illness. It’s the luck of the draw.

The rheumatologist did a physical exam to see if there were any physical signs of inflammation. I also mentioned that a doctor had diagnosed me with rosacea earlier in the year. It happened at my mum’s house when I was getting a skin check; the doctor noticed what I thought was acne. But there were no visible signs of inflammation on my body now. No swelling in my joints, no redness, rosacea or psoriasis (all things that could appear in RA). All of this meant the rheumatologist didn’t want to formalise my diagnosis. I was torn. I researched, joined some Facebook groups and started following some people on Instagram. I didn’t really want to go on the hardcore medications people discussed, especially immunosuppressants, during a massive COVID outbreak that wasn’t going away. On the flip side, a diagnosis would give me access to the COVID vaccine sooner. I decided that avoiding the hardcore drugs outweighed the benefit of getting the vaccine, especially since I wasn’t going anywhere anyway. The rheumatologist did mention that if I developed any physical signs of inflammation, to go back, and we could discuss the next steps. I said that would be easy cause my joints are skinny, so I’d notice any change. I got a prescription for anti-inflammatory pain killers and went home to work on how I can work on managing the symptoms I do get.

Coming to terms with my chronic illness – an answer

So I didn’t have a formal diagnosis of RA and still had no idea why I had chronic fatigue, but I had some form of an answer. One of the impacts RA has on the body is chronic fatigue, and because mine had been progressively getting worse over time, it could actually be linked to the RA. There was also the added interest in chronic illnesses and post-viral impacts on the body, with people who caught COVID suffering symptoms long term.

Some research came out on Epstein Barr Virus (EBV) and how it may be involved in causing chronic illnesses such as Chronic Fatigue Syndrome and Multiple Sclerosis. This triggered a reminder to me that when I was 17 I had a really bad flu, probably the only illness I had as a child that my mum didn’t easily treat at home. Anyway, I went to the doctor because it was so bad and I needed a week off school which required a doctor’s certificate. The doctor ran tests and said that although I didn’t have glandular fever (the common name for Epstein Barr Virus) I did have the antibodies in my blood. The thing was the last time I had been to the doctor was a year earlier for flat feet. So if I did have glandular fever it was mild enough to be looked after at home.

So was this what triggered my chronic fatigue? Unknown but given I was never able to find any other answers I’m going to put it down to this. There is also research that people with RA also have high levels of anti-EBV antibodies in their system, so this detection of the virus as a teen could also have been a very early indicator of the RA to come. 

This isn’t the end of my journey however, things took a turn at the end of 2021 and made a huge change!