Chronic Pain and Me.
Being 24 has its own set of pressures, however being a 24 year-old living with chronic pain is whole other kettle of fish.
Chronic pain is a term I didn't apply to myself until recently. It has connotations of an older generation with seriously limited mobility, however in the last six months I've learned to embrace the term as I struggled to fit my problems into a tick-box.
I'll address separately the struggle I had with Scoliosis, which is a condition leading to curvature of the spine, but this is a topic I'd like to write at more length about - given that it's had such a huge impact on me.
A couple of months before I got married in 2017 I began having discomfort in my leg. To begin with it didn't hurt, but it definitely bothered me. It got to the point where I couldn't go for bikini waxes any more and had to start shopping for clothes and underwear a size up as even having clothes pressing on my leg hurt.
But then it became very specific, although my underwear couldn't press, I had to wear shorts under my skirts at all times, because any movement of my leg hurt. Having been blessed/cursed with thicker thighs and having been on around 7 different steroid medications, my thighs had only gotten bigger. By the time I was referred for other treatment, I was on a high dose of pain medication and using anesthetic patches.
I went to the GP in tears, I wasn't sleeping because of the pain, driving hurt, it was impacting on my work and my relationships. After what felt like an eternity I was referred back to my original spinal surgeon and to the Pain Clinic at Stobhill Hospital where I was told they'd be able to offer me alternative treatments.
My referral came through after meeting with my spinal surgeon who could instantly tell me what I was suffering from, Dysesthesia. A neurological disorder and not all that uncommon.
I don't think anyone will ever understand the relief I got from this, I'd spent more than a year trying to describe how my leg hurt to touch, bit that it hurt not to touch too. I know it was driving my husband and my mum up the wall so to be able to talk to someone who understood was massive for me.
As I had said, suffering from chronic pain was really beginning to impact on my relationships and I didn't want to do anything. I felt huge from the cocktail of drugs I'd been on and felt sure that everyone could see me lumbering along and struggling with stairs and getting in and out of my car. Being married only a year, I know it probably affected Simon too, with me not being keen to do things and complaining about how I looked.
Knowing I might have a chance to change this was massive.
The surgeon told me that he'd do whatever he could to help me end up pain-free but with the caveat that there wasn't and wouldn't be a surgical solution for me. Due to the way my surgery had been carried out, any more would likely damage my nerves further.
While I should have been thrilled at no more procedures, I had really hoped for an easy fix. Instead I was referred for an MRI and told that once I'd been seen at the Pain Clinic my surgeon would send for me in what sounded like a very retro manner.
I was scanned at the MRI clinic in February and the following week finally made it to the suggestively named Pain Clinic.
I was seen by a doctor, who, for what felt like the first time was focused intently on getting to the root of my pain. This isn't to say that my surgeon and GP weren't - but they were also taking into account other aspects such as 'did I still physically have a malformation in my spine?' or 'was I stable enough to be working?'.
We ran through a full history, he asked questions I'd never been asked before and was able to link totally unrelated things in a way that made sense.
We decided on a treatment called Capsaicin Cream. This is a capsaicin-based treatment which is the heat taken from chillies. It's administered by a nurse in a controlled environment directly to skin.
It has pain reducing qualities as it literally burns your nerve endings when suffering from neurological disorders, such as Dysesthesia.
The two-hour appointment sounds relaxing on paper, with prompts to bring a book or some music and take some paracetamol due to some slight discomfort.
The very little I found online was somewhat counter descriptive, finding that "without special precautions it can initially cause pain and a feeling of burning on the skin" (Derry, S. et al)
"The single application of capsaicin causes pain, however repeated applications causes analgesia through a defunctionalization or desensitization state of the C-fibers [Knotkova et al. 2008]" (Pappagallo, M. and Peppin, J.)
I'm no expert, nor do I claim to be - but what struck me as quite noticeable was the absolute lack of information accessible to the average person. I can hazard a guess at what defunctionalisation and desensitisation is, but have no clue what a C-fiber is.
So hopefully after my treatment on Friday, I will emerge a new pain-free woman.
I'll give my own experience of the Capsaican cream, and if it helps another person struggling with their pain, I'll be happy.