Blog post 5 - Episode 4: Here comes the pain again!
- jeddison54
- Dec 23, 2021
- 9 min read
Updated: Mar 15, 2022
This part of My AS journey is all about the period where back pain turned to agony and took hold. It continues from the previous post and early 2009 (covering a year April 09-April 10) when I started to be affected by back pain.
Introduction: charting the time when AS set in and became an inseparable part of my life.
As I started to identify in my previous post, it had become normal for my days to start with bad back pain. The pain would ease over time with painkillers but was starting to impact my way of life.
This post follows on from that period, highlighting the start of getting treatment and the long, winding journey to an AS diagnosis. As was the case in the previous few years, I continued a lifestyle centred on cricket and drinking, but some events over this year would change that.
This year of my life was a significant one in terms of my health journey but also my personal journey. Again, reflective of being in my early 20s.
Worsening back pain; psoriasis, psoriatic arthritis, methotrexate, and crippling morning stiffness
After a few months of trying to get through the pain and stiffness that I was experiencing in my back, I realised it was time to take some action.
Alongside the pain I had also noticed that my psoriasis had got a lot worse, having been very minor for a few years now. The pain in the mornings was so bad that there were very few days where I could even manage to get out of bed without pain killers.
This meant a new nightly routine (even after many pints) had to take place ensuring that I placed the tablets in reach of bed. I couldn’t even make a few steps across my flat if not. The back pain initially would make it difficult to even sit up, let alone get up. Regularly an hour would pass before I could make it up and into the shower. Many nights the pain would wake me well before my alarm went off.
My psoriasis was starting to spread over my body to the scalp, back, tummy, legs, and arms. The itchy skin would flake all over my flat, creating almost a layer of dust on the wooden floor. Although annoying the psoriasis did not bother me like the pain was. I have said before that the pain is difficult to describe. Looking back the only way I can even start to describe it is as a hot, radiating, deep, tight, constant throbbing feeling, coupled with the sensation of being in a vice. I am however not even sure that does cover what it was really like.
After going back to the hospital and a few investigations, initially they confirmed my inflammatory markers were up. Their thoughts were of a diagnosis of Psoriatic Arthritis. At that time, it made sense as I obviously had psoriasis, you could physically see it! Knowing what I do now and what I have been through, with the wonder of hindsight the back pain as the primary issue didn’t add up with that view.
After a short time back on the stronger NSAID’s the doctors put me on an oral course of Methotrexate. A drug that until recently I can honestly say was the worst I have been on and affected me quite badly. I would take a tablet once a week, which would almost instantly knock me out. That night would be a wipe out with me fast asleep within an hour of taking the tablet. Luckily over time it started to reduce the pain and help my inflammation. I still required to top this up with regular Ibuprofen though for a long period of time, a combo that was not doing my insides any good.
So, what are Psoriasis and Psoriatic Arthritis?
I had knowledge of Psoriasis as my mum had lived with it for many years. To help you understand it though, Psoriasis is an immune condition, just like arthritis, but rather than joints the effects are mainly on the skin. It forces a person’s skin to replicate quicker than normal and replace itself before you need it. This results in flaky, scaly, red patches on the skin. It can exist on any part of the body and is driven by an overactive immune response in the t-cells. As we are 2 years into a pandemic where t-cells are all over the news some of you will be familiar with the term.
According to the Psoriasis Association, it affects:
Between 2 & 3% of the UK population.
Up to 1.8m people.
Affects both genders the same.
Can be at any age but common peaks from late teens to early thirties and then between 50 and 60.
Like arthritis it will affect both physical and mental health.
You can find more information on Psoriasis here at the Psoriasis Association website.
People with psoriasis can develop Psoriatic Arthritis, which causes painful joint inflammation and alongside the psoriasis. The main symptoms are painful swelling and inflammation inside a joint, which is inflammatory arthritis just like AS. It can affect any joints including the spine and often leads to swollen toes or fingers, or as I was told ‘sausage toes’!
Psoriatic arthritis (PSA) can be genetic or be caused by an infection or injury. The treatments are like those with AS starting with NSAID’s, DMARD’s, steroids and finally biologic therapy, while the psoriasis will likely be treated through steroidal creams or UV light therapy.
More can be seen at Versus Arthritis including the symptoms, causes, diagnosis, treatment and tips to help living with it.
What is this drug Methotrexate and what is it used for?
I knew little about it when it was first prescribed apart from someone told me it was a drug used in cancer treatments. I quickly learnt that Methotrexate is classed a disease modifying anti-rheumatic drug (DMARD). These drugs are, as the description suggests, used to modify arthritis, and reduce the immune activity of arthritis and other diseases. Reducing the immune activity or immune response, will reduce the inflammation associated with the arthritis lowering the levels of swelling and pain. It in essence stops the body’s immune system attacking itself.
As with all medications Methotrexate has a set of side effects and will impact everyone differently. For me currently the effects were mainly the exhaustion and a bit of headache or nausea. The Versus Arthritis website has a comprehensive set of information on methotrexate where you can find out more. They also have a long list of questions and answers.
Why does Axial Spondyloarthritis (and other arthritis) affect people more in the mornings with stiffness?
I have made quite a lot in this and my previous post on the affect that I experienced from morning stiffness and pain. This was the most debilitating part of my arthritis all these years ago, but why does it happen?
Most people with a form of rheumatoid or inflammatory arthritis, which AS falls under, will experience stiffness. This is always worse in the morning or after periods of inactivity.
My understanding of this is that the morning stiffness is caused by the inflammation that you experience which builds up during the inactivity. So, laying down still asleep for hours will cause a build-up of inflammation. The stiffness can be helped by physical activity or a hot shower to get your joints moving.
For me I have noticed a massive difference since I started walking a lot more and any morning stiffness would improve through my early morning dog walk or the walk to work.
Also, I have linked my wake-up habits and any stiffness.
Getting straight up makes it easier to work out the stiffness.
Repeated snoozing or laying in bed only make this worse.
I always jump up when woken, usually now by our little girl!
Click here to see tips to manage early morning pain and stiffness from creakyjoints.org
Versus Arthritis also have several tips to improve morning stiffness.
Changing life and lifestyle - a new job, a new home, new relationship and breaking some old ones
My last post was focussed on my lifestyle and the bad habits that I embedded in my routine around drinking, eating, and socialising. The majority of 2009 continued with a lot of those trends but by the spring of 2010 a number had started to be broken somewhat.
I will start with cricket and the associated social life that came with it. The summer of 2009 was my second year as club captain. Being captain got me even more engrained in the social side of the club and now being independent living alone for the full season saw my drinking go up a few notches. That cycle remained throughout the season and there were not many Saturdays that did not end up in a club in town.
On the field we played well for the first three quarters of the year before dropping away and disappointingly finishing mid table. I honestly felt we could challenge the top two who we were closely on the tails of for most of the year. The club however lacked that ambition, and the team would rather just enjoy the end of the season. Personally, my back was really hampering my ability. It reached the point where I was embarrassed to be on the field. This meant I could not challenge the team to keep striving for more when it was impossible for me to do that.
There is one example that really stuck with me we were playing one of our rivals away. We had them in trouble until we dropped a catch and I exploded. The frustration of my own performance was really getting to me. I then moved myself down the order as I could hardly move. The oppositions Aussie bowler, who I had a few battles with got really stuck into me. He thought I had bottled it by moving down the order, not stuck by my team and had a few unsavoury words for me. I honestly was fighting not to break down in tears, not because of the abuse but being powerless to play to my ability. My only riposte was that I should not even have been playing. The mention of back arthritis immediately changed his stance and he spoke to me about it after the game and apologised.
Off the field there were so many politics to deal with. They annoyed me at the time but equally helped me in future work environments. There were always complaints, opinions, and niggles about how we went about it. At one point our cricket director, who was interfering in team matters, basically threatened that if I insisted on less input then some players would not play for me. Coincidentally this happened at the time we started losing. Where did the power to run the team really lie?
Two things happened at the back end of the season, firstly I moved to just outside the village where I played. My rationale being that was my life, and it would be easier being closer. Conversely though I then decided to resign from the captaincy (giving up on my team) as the frustration built up and I just had to go. I was not in a place to continue physically or mentally.
Those decisions made the winter quite difficult but ultimately enabled me to leave other things in life in the past. As the season ended the main social activities did too, so that winter my drinking reduced significantly. Living where I was also meant I further distanced myself from my school circle of friends, I couldn’t justify the effort to go anymore, to myself that is.
The winter of 2009 and into early 2010, was spent mainly in my new flat. The only things I really did were watch cricket on the sofa, often sleeping through the night with it in the background or playing cricket on the PlayStation. My activity levels really dropped, and I carried on the comfort eating.
The other event in life at that time was a change of job moving to Leeds Teaching Hospitals where I would spend 3 years, project managing improvement projects. This job is where I met my now wife, Claire.
Our relationship will be touched upon more in future blogs as she has been a massive part of my AS journey. It was a funny story as a starting point to touch on, that came at a time where I was very low in myself. One day in the office a colleague of ours, who was the office joker, just randomly came in and said that I should take Claire to the pictures that evening.
At that time, I just thought he was having a laugh! Mainly because he was such a joker but also because I had no confidence that it would be true. Also, my only, very short, relationships to that point had started in the pub or club! After much inner debate that evening and worrying, I had offended her I messaged her and we went on our first date shortly after, drinks rather than cinema. The rest is nearly 12 years of memories.
Click here to give to my next walking challenge, a 50km hike around the Lake District to raise funds for NASS.
My next instalment will be with you soon, looking at the next couple of years and moving towards an AS diagnosis.
Merry Christmas all I hope you have a fantastic Christmas with your loved ones.
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