Last year I was diagnosed with Undifferentiated Connective Tissue Disease (UCTD) - an autoimmune disease. Living with UCTD has forced me to adapt as UCTD is a disease that has no cure, but its manageable. Here I want to write about my experience of pain … and accepting it
This is part of my continuing series on Things I’ve Learned with Undifferentiated Connective Tissue Disease (UCTD) - an autoimmune disease. UCTD is a lifelong disease that has no cure, but its manageable. You can read more in this series - see the published articles next to this on the right.
Acute vs Chronic Pain
Let’s start with a brief distinction between Acute Pain and Chronic pain; the first you feel when you cut off a limb, are stung by a bee, or get fresh lemon juice in a cut on your hand. While Chronic pain, to my mind, is the continuous, underlying level of pain along with your awareness of it.
So you could say Acute Pain is short and sharp and Chronic Pain is ongoing and long term (which can also include acute periods).
Chronic Pain - the invisible vs visible
I know I’m lucky, right now my pain is manageable and it doesn’t stop me from doing all the things I want. I know for others, the pain is not manageable and the progression of the disease and symptoms stop them from doing what they want.
I have had to accept that I have a ‘chronic illness’ and with it comes ‘chronic pain’, but this I struggle with because these are not labels I associate with my self image.
On the outside, what is visible is that I look ‘healthy’, but when I look a little closer - I can see the eczema, feel the pain sensations, notice the swollen joints and the fatigue. It’s this invisible factor I am coming to accept. Because even on a good day, there is a lot more going on than is visible.
I can’t ignore these as facts, it would be detrimental for my mental health if I did, so I have learned to accept and live with these labels.
My Daily Pain Management Chore
Managing pain and joint inflammation is a daily ritual chore. It’s not exciting or sexy, and it can’t be gamified: I won’t level up or be rewarded.
I’m a convert and believer in keeping up with a ritual of taking regular doses of medication, rather than not taking anything and waiting for the pain to hit. It’s too late and harder to reduce pain, if you only take medication when you feel pain. The days where I’m feeling good are just a little better thanks to the meds - because I’m on top of the pain.
For me, the worst times of the day are:
- early morning,
- later in the evening,
- middle of the night.
When I wake-up I’m immediately aware of the pain sensation - UCTD, like other immune diseases affects joints and there is symmetry to this - so I feel it in both wrists and both ankles. Straight away ill take analgesics and usually some ibuprofen.
Early in the day, often its my fingers and the joint inflammation that get to me - pudgy fingers are not good at holding a pen and writing. This will go away by mid-morning.
During the day, some times the pain doesn’t bother me because I’m occupied with work or other activities. There are times, when I’m mentally batting away thoughts and sensations of pain while trying to work, or drive.
There isn’t a break from the ritual chore of taking analgesics, NSAIDs and associated stomach ulcer preventative medication. Every four hours that I’m awake I’m taking some medication.
Tips for Managing Chronic Pain
What I have learned to do is check my pain, mood and tolerance levels during the day. Just to be sure I’m not in too much pain and this is also to avoid me being moody and short with work colleagues, people in shops and my friends and family.
Why do this? Because I believe we have a tendency to persevere with a task if we think we can tolerate the pain while completing the job. This ‘good’ work-ethic is ok in the short term, but it doesn’t account for the impact we have on people around us.
With Chronic paint, we may at first not notice the irritation and becoming short with people on calls or in person, and you could end up making irrational decisions at work to get the job done - so not actually doing a good job.
What is the likely outcome if this happens 1-2 days a week? Every working day or every week?
Some medications come labelled with warnings like ‘Don’t drive vehicles when taking this’. We need to apply the same logic to our lives, because the medication we take comes with warnings and side-effects - so if you’re feeling nauseous, irritated by eczema and having a bad day - do something about it.
It’s very simple - to check-in on your pain, mood and tolerance during the day. If things aren’t good - Go take a break - find something to do without impacting others … and just let yourself ‘relax’, even if only for 5 minutes. Being mindful and aware like this benefits you and others. This is extra important on days you take drugs like methotrexate.
If you think this will help - ask your doctor if they can refer you to some CBT or mindfulness training - or look online to see what options are available near you.
Chronic Pain - Where am I now?
There was a period in spring 2020, where I was feeling well and ‘just’ taking my DMARDs, I could genuinely take an analgesic for a headache. That was a good couple of weeks … and so I know it’s possible to get to that state.
During summer, I started to wake at 3am, wrists or ankles throbbing, with fingers swollen and puffy. It’s the throbbing that wakes me. I take more medication and if I can’t get back to sleep - then my day will be all the more difficult and I’ll need to practice my mindfulness more.
You are not insane, UCTD is real - be mindfull, show grattitude towards yourself and living with UCTD will be easier.
I was diagnosed with UCTD in 2019, one thing I have noticed is a lack of information specific to UCTD. If you found this helpful, please let me know … it’s encouragement to keep writing.