Sue's Story

My name is Sue; I am 65 years old and have suffered from back pain since the age of 11 after I was injured in a fall at school.

Following my injury, I was diagnosed with bruising and then with a slightly displaced vertebra. As I grew older the pain developed until a slipped disc was detected when I was 35. To diagnose this I had a myelogram, a diagnostic imaging procedure whereby dye is injected into the spinal canal to enhance x-rays. I suffered complications from the myelogram, however it did show that I had a very large prolapsed disc which was immediately operated on and removed.

I had very few problems for about five years afterwards until I began to experience tingling and burning sensations as well as extreme pain in my legs and lower back. Pain is so insidious. If you can't see something wrong, it's so easy for people to dismiss it as all in the mind, or nothing much. I remember one doctor recommending that I saw a psychiatrist as he did not recognise my symptoms as genuine. Nothing is worse than not being taken seriously or believed, fighting for a diagnosis is so difficult in many circumstances.

Finally, after several years of investigation I was told by my consultant that I had arachnoiditis.

Arachnoiditis is generally caused by “trauma" to the spinal canal, either as a result of a reaction to the dyes that used to be used as a contrast medium during myelograms or by the trauma of surgery to the spine. What happens is that the meninges surrounding the spinal cord (as in the brain) has a reaction to the dye/trauma, and begins to inflame. The arachnoid membrane is the middle of three membranes: dura mater (outer), arachnoid (middle), and pia mater (inner). The pain that affects me most is as the arachnoid membrane is thickening due to inflammation; this adheres to, or grows into, the nerve roots coming out of the spinal cord. In my case, this mainly affects my legs and back, but depending on where the arachnoiditis is situated, it can cause pain in the arms, neck and trunk of the body.

After the first surgery I had a further back operation in 2007 for yet another prolapsed disc, this was not terribly successful, and pain returned within four months.

I now have both physical pain from the vertebral fracture and previous operation sites, and also neuropathic pain from the arachnoiditis, which affects my legs. It can feel like a “fizzing" sensation, like small electric shocks, and my feet and legs can feel as if they are burning. It's incredibly painful and causes very disturbed sleep, sometimes all I can do is walk around for hours to try and ease the pain. Consequently, tiredness, anxiety and plain irritability cause a great deal of tension, no matter how supportive the partner. When you cannot see the problem it is very difficult to explain to someone just how bad it is.

For pain relief, I have been on tramadol for many years, with occasional forays with morphine patches, diclofenac, and anti-anxiety and anti-seizure drugs. For me, tramadol and back-up paracetamol are the only things I can take without being classed as “out of it".

I was quite low when the second surgery didn't work too well, but was determined not to let it stop me from living my life. The phrase “use it or lose it" has been my mantra for years, and as I have always had a dog in my life (and a cat in the house too!) I was drawn to an advert in January, 2008 for kitten fosterers/ hand-rearers for charity Cats Protection. I love animals (in many ways I prefer them to human company!) and so I went along to offer my help.

Sue gets a lot out of fostering and hand-rearing kittens for Cats Protection

Within a few months I had my first litter of tiny kittens to hand rear - and I haven't looked back! Nearly 300 tiny ones, from three days old to eight weeks, have passed through my hands, and I have loved each and every one. There is the occasional heartache when one you have nursed and fretted about passes away, but sometimes it is meant to be, and they are never alone or not loved for however short their lives may have been. The few you lose are so outweighed by the joy of seeing them grow and develop, then watching them go on to wonderful “ever after homes".

My dog, Megan, a 13 year old lurcher-cross, is my constant companion, along with three year old Tinkerbelle, a black cat I hand-reared from three days old. The animals give me a focus beyond myself; each and every day, you push yourself to walk twice a day - granted we don't go so far or so fast now - either of us! - but we get out and about. The kittens are demanding, but if you can't sleep, you might as well be doing something useful right?!

Sue's pets: Lurcher-cross Megan, and cat Tinkerbelle

My husband Stephen is really supportive, although he does have trouble realising just how painful it is sometimes, I am thankful that he looks after me so well. Anything moved, lifted, just getting me things I need, it's so appreciated. Sometimes we forget to say how much it means.

The weather certainly affects my mood and the severity of my pain, and so signing up to Cloudy was a no brainer! My husband and I spent a week in Bordeaux in July where it was hot and dry and although I certainly “over did it" the pain levels seemed so much less, and I took fewer painkillers as a result. Here in Wales, it is very humid at present, very wet - and painful.

Hopefully, this study will help all sufferers of pain manage their medication and understand their pain better.