Pain is a universal symptom with disease and illness, and especially so with the autoimmune arthritic conditions.
I cannot remember the last day whereby I did not have any pain. As with most of the symptoms with scleroderma, no two patients will present with the exact same set of symptoms. I know other patients with the diffuse subset diagnosis who experience little pain.
For me, the symptom of pain totally dictates my day-to-day life, along with fatigue and mobility challenges. I focussed on fatigue in Day 14 Scleroderma Awareness Month. To read the article click here
I focussed on mobility in Day 20 Scleroderma Awareness Month.
I have tried all of the recommended pain killers / analgesics, with little success other than the stronger the drug, the higher chance of projectile vomiting and mind fog.
I have therefore learnt to try and ‘manage’ my pain to a tolerable level. This involves doing the bare minimum exertion as possible for each day, along with time management by way of being horizontal for the days leading up to a ‘big’ day out. For example, traveling to London (three hour car / train journey each way) is a ‘big’ day out for me, which will be followed with ten days of feeling even more fragile than ‘normal’ scleroderma-like fragile. This level of pain can be so severe that my entire digestive system will be too fragile to eat for two days, and I am not strong enough to stand for the length of time needed to make one of my fresh juices!
Living in constant chronic pain is a challenge and a life changer, presenting under an invisible guise. I am no longer able to participate in many activities which the ‘pre-diagnosis me’ enjoyed. And sadly, this list includes alcohol. I would never have believed ‘back in the day’ that I would be ‘booze free’ of a weekend! I think that the last time I had alcohol was on my fortieth birthday, 3 years ago.
I hasten to add that these years of sobriety were preceded by at least a decade of ‘binge drinking’ on an impressive scale, (Professor Denton does not know about this…..), which was eventually brought to a halt by the effects of scleroderma and its medications to my body. Although the alcohol numbed my bodily pain momentarily, the after effects of when the toxins were being expelled from my body were severe, and it took days / weeks to feel marginally better. During this time, I found that my mind was not particularly helpful with the thoughts that I was having in relation to the severe level of pain which I was experiencing, as well as, my perspective on the total hijacking of my body and the destruction of my personal life plans. So I chose to stop the drink, as I want to feel good, and after all, alcohol is a natural depressant, which I certainly do not need, on top of a scleroderma diagnosis.
Pre diagnosis, my hair was a lot thicker, shinier and stronger than it is now. However, I am grateful that I still have my hair, even though my hair loss remains a daily occurrence, as can be seen by my scleroderma teal hairbrush, in the above image. My hair loss has slowed since I no longer take any chemotherapy or immunosuppressants to manage my scleroderma symptoms. I ceased the 2 g daily dose of mycophenolate mofetil which I took for five years, on the day I achieved my personal dream of being a self employed barrister on March 1st 2004.
Eight weeks later, I had to accept that I had to change my lifestyle to respect my symptoms, forcing me to relocate to my family home town of Southport in the UK. My full time job is managing my symptoms to a tolerable level.
I am now 12 years chemo / immunosuppressant free which I am delighted about. I choose to focus on the things which I can do and make me feel good — even when my tin man body which feels as though it has been wrapped in barbed wire and dipped in concrete, has other plans for the day.
One day, very soon, I hope to be able to say ‘I am Scleroderma and Raynaud’s free’ and that we all live in a scleroderma free world — imagine that!