Sarah-Jane's Story

I don't remember what not being is pain is like. Pain has been a constant in my life for my whole life. Until two years ago, aged 42, I had no idea why. Pain became my normal and I just did my best to live with it, although, over the years, my ability to function and cope waned dramatically. When I was 42 I was diagnosed with Ehlers Danlos Syndrome (EDS) (Hypermobility Type) which was a light bulb moment for me as suddenly all of the weird and on-going symptoms I'd had since childhood all fell together into a diagnosis. The same two specialists that diagnosed me with EDS also confirmed two other labels: Complex Regional Pain Syndrome (CRPS) and Fibromyalgia. I also have Adenomyosis, overactive bladder syndrome (OAB), functional bowel disorder, migraines and Hemicrania Continua all of which cause pain. I have numerous other labels as well but I think that's enough to start with!

I've struggled with joint problems since childhood. I constantly sprained both ankles and I developed carpal tunnel like symptoms when I was ten. During my twenties I was in a car accident and I injured my brachial plexus which reduced the function in my right arm. However, I was also struggling with pain in lots of my joints: my jaw kept dislocating, my knees started to give way, I developed pain in my lower back and hips and I developed a constant background headache. No doctor could provide an explanation for any of this, let alone a treatment, and I was told I needed to 'learn to live with the confines of my disability'.

Although many aspects of daily life were a struggle, I carried on the best I could until I had surgery in 2010. It was the start of a downward spiral which has left me a wheelchair user and permanently on crutches. Other joints have since started to misbehave and subluxate including my knee caps and thumbs. Ehlers Danlos Syndrome has also affected my internal organs and my autonomic nervous system causing regular falls as well as bladder and bowel problems. The pain is a lot to deal with but I personally find it's the mind-bendingly intense fatigue that I struggle with more.

Without a shadow of a doubt, the worse pain imaginable has been with the Complex Regional Pain Syndrome. It's a complicated syndrome and the pain is beyond anything I've ever experienced before. In 2014, I had a fall and injured my left ankle, I was in a boot and on crutches for six weeks, but the pain got worse, not better. CRPS causes colour and temperature changes as well as increased sensitivity to touch, even a light breeze can be agonising. It's hard to describe the pain but it's a constant, gnawing ice burn (many sufferers get burning pain but I only get that occasionally). It never eases and it doesn't ebb and flow like my other pain. It's been incredibly hard to live with it, particularly since I then developed it in my left hand. Life stopped for me when CRPS started two and a half years ago and it's only recently that I'm starting to find a way through it. I had to stop working which was so hard for me but I haven't given up the hope of getting back to it again. Being in a wheelchair has been hard but it's given me more independence again.

Over the years I've tried numerous treatments but none have really helped. I've had Botox, cryotherapy (use of extreme cold in surgery or other medical treatment), nerve blocks and there isn't a painkiller I haven't tried. Paracetamol is the only form of pain relief I can now tolerate but I rarely use it. I use a TENS machine occasionally but it can trigger a flare with the CRPS so I have to be careful.

I went on a three week rehab programme for the CRPS which really helped me to get to grips with my condition and the on-going specialist physiotherapy is helping me to regain some muscle strength and function. For me, my best therapy is meditation. I've meditated for over twenty years and I use a variety of breathing techniques to manage the pain. Over the years I've learnt several different techniques as well as some different complementary therapies (like Reiki) which I combined into my own unique style which seems to work for me. I do find it's the only thing that really helps my pain although there are still days when I long for a drug to magic it all away!

I used to teach meditation before my health deteriorated as I believe in it so much, sadly many people are deeply sceptical of it and prefer opiates. Breathworks - is a good technique for pain relief, and some aspects of it are useful for me. I've read a couple of the books by Vidyamala Burch which are a good starting point. Mindfulness is very much the 'buzz' thing these days!

There is no doubt in my mind that there's a connection between the weather and pain. I find the damp makes my joints ache, hot weather makes my muscles tight and heavy, and hot or cold intensifies the CRPS pain (and I can't tolerate the feel of rain on my left hand). I find the weather affects my mood as well which also affects how I manage my pain: a warm, spring day lifts my mood but the long dark days of winter seem to lead to many more low days when the pain is hard to cope with. This isn't universal of course as the reverse also happens.

I signed up for the study as it looked like an interesting opportunity to contribute to research into pain. The lack of understanding of pain and chronic pain conditions never ceases to amaze me as it affects so many people. I guess the brain is a complex piece of anatomy and how we each perceive and feel pain differs. Any contribution I can make, however small, brings a small sense that my struggles may, in time, help others. That sounds a bit twee, but I find it's important to try to find the positives!

You can contact Sarah-Jane on HealthUnlocked via the username sarahjanegrace.