Meeting The Ghost of My Former Self.

I used to be quite a fit and healthy young man. From the age of sixteen I was forced into activities I wouldn't ordinarily have undertaken. Up to sixteen I avoided any physical activity because I thought I couldn't do them with any flare or skill like my schoolmates could. I was crap at everything - running - always came last, swimming - always came last, football - always last to be picked, cricket - ditto, hockey - ditto. Sport + Gary McArthur = Disaster.

At sixteen I joined the police cadets and everything changed. I knew it would and I wanted it to. Suddenly I was challenging my attitude to physical activities as something to be shunned by forcing myself (or being forced) to undertake them on a daily basis. Granted I still wasn't any good at them, but I tried to break my mindset towards them. The police force got me hiking, abseiling, camping, canoeing, mountain climbing, cross-country running, orienteering, weight training and partaking in almost every other sport known to man in much the same way as the army trains a team of dropouts into soldiers. The police force instilled discipline and order and gave me a massive sense of achievement. In amongst all of the legal definitions and laws and regulations the police force also gave me good health which lasted me well into my thirties. Conversely, it also taught me how to drink like a fish! (but never lose my self control) and that's another story for another time.

From sixteen until my mid-thirties I considered myself to be a fit and healthy individual - not obsessive, but I remained lean and strong and enjoyed outdoor activites like hiking. I'd bump into former school mates who'd let themselves go by piling on the pounds and I felt quietly smug that I hadn't descended into obesity. I was no longer embarrassed by my slender build as I had been at school.

Then.

Then I suddenly died. It wasn't gradual or slowly degenerative. It was overnight. I woke one day with backache. It was 2003. Between then and now I haven't had a single day without pain. Obviously, there have been good and bad, as well as bad and really bad, days, but every day I have had some level of pain in my back. Sometime after the backache began I started to get pain all over my body - arms. legs, head, neck, feet, fingers, toes, hips, knees, and sometime after those symptoms started I began to get the internal ones, IBS, Crohn's, you know the drill. Fibro affects us all in pretty much the same way and a whole myriad of different strokes for different folks.

The point is this, on that day in 2003 when I awoke with backache, my former self had died in its sleep. Over the course of the next thirteen years, as each symptom struck, I gradually became the ghost of the Gary McArthur I used to be.

The physically fit Gary McArthur became the disabled Gary McArthur, and over the course of 2015 the Gary McArthur who was always positive and happy go lucky and forward thinking and strong, became the depressed Gary McArthur, the negative and whining and hopeless Gary McArthur, and it was at this point in my life that I finally met, or recognised, the ghost of my former self - that skinny and spotty little sixteen year old boy, who'd been scared of all physical activities who, through sheer determination, had turned it all around, who'd laughed in the face of his fears and grown to love them (without ever being any good at any of them) was dead. He died when I gave up being 'well'. He died when I gave up fighting. He died when I lost hope during the course of 2015 and became depressed. He died despite reading hundreds of blog posts by other fibromyalgia 'survivors', all with a positive message that laughed in the face of their illness. He died when I stopped laughing in the face of mine.

But, fear not, for that skinny little sixteen year old's spirit is still inside me and he will live again.

I've set myself a goal for 2016: To find the spirit and the grit and the determination and the hope I had as a sixteen year old boy, and laugh once more in the face of my illnesses. To challenge myself in the way I did when I joined a career path I knew I wasn't suited to, simply to face my fear of all things physical.

Are You A 'Loner' or A 'Sharer'?

When you live with any chronic condition there are highs and lows. For me the highs are when my pain is at a manageable level and I can get on with the things I want to do, whether it's mending something in the house, doing a bit of art, blogging or just trawling the internet for a couple of hours. 

These activities provide me with a bit of 'me' time, when I can escape the rigours of family life with only mild pain and life is good. Another 'high' for me is spending time with my wife and daughter - trips to the park or the local museum for my daughter and me, and days out as a family (usually involving shopping - which I abhor, but put up with for the sake of family unity!) as well as cosy nights in front of the TV. These are the things I enjoy during the 'highs'.

But doing these activities during the 'lows', when my pain is riding high,  I find depressing. It's because I'm unable to enjoy them as I normally would. I get that. Because I can't sit still to draw or watch TV, I can't walk (far) without severe pain and I can't focus on anything but the pain. It's depressing for me because I feel I'm letting my family down. It is during the 'lows' that I find myself wishing for solitude.

I'm not really nice to be around when I'm in agony. I do try, really try, not to let it affect my family, but I fail, really fail, at hiding the fact I'm in a 'low'. I don't think my family would, or should, want to be around me - so I pray to be alone. However, I rarely am alone and this makes me depressed - especially if I wake in a 'low' on a day we had planned to do something and we have to cancel - because of me, it's my fault, I'm depriving them of their fun, if it wasn't for me they'd be able to get on with it - that sort of depressed, that sort of feeling of 'if I was alone I wouldn't be letting anybody down.' 

So I've reached the conclusion that, essentially, and because I'm in unmanageable pain for probably 75% of the time, I am a 'Loner.' I hate 'sharing' the 75% of my life.

My wife is the opposite. My wife hates to be alone when she's suffering with her ME. She loves to share her pain and fatigue symptoms with us and explain how she's feeling at every given opportunity. I find that odd and, at times, profoundly irritating and yet it is also endearing and intriguing. Being polar opposites I find makes me want to be more like her. I could never go in to as much detail about my level of pain with her as she does about hers to me but, sometimes, I wish I could unburden myself like that. Case in point: I hold back on everything I'm feeling when talking to my GP - and because of my reticence to share the finer details, he is confused about how best to treat me and I no sooner sit down in front of him than I'm walking out of the door. My wife's appointments last a minimum of fifteen minutes. My wife definitely likes to 'Share' it all!!

So, what about you? Are you a 'Loner' or a 'Sharer'?

(This post was originally shared at MyFibroBlog)
  

Blood Test For Fibromyalgia

King's College, London published the following article in May 2015 which reports they were funded by Arthritis Research UK to research and develop a reliable blood test to identify fibromyalgia and potentially develop new treatments.

Fibromyalgia is common pain syndrome causing widespread muscle and bone pain, as well as fatigue and disturbed sleep. It has no obvious physical cause, is poorly understood and difficult to diagnose, treat and manage. For years there was doubt among the medical profession whether fibromyalgia actually existed – except in the minds of patients.  (Sadly, this is still true of some medical professionals!!)

There is still no specific blood test, scan or x-ray that can confirm a diagnosis of the common pain syndrome, although blood tests are often carried out to rule out other conditions.

Now scientists at King’s College London, funded by a three year grant of £171,000 from Arthritis Research UK, are hoping their latest research will lead to a reliable blood test to enable doctors to make a proper diagnosis. 

The research team will examine samples and measurements taken from 400 twin volunteers from the 13,000 Twins UK Bioresource in which one twin has chronic widespread pain, to try to identify biomarkers in the DNA associated with the condition. It will be compared with the DNA of their healthy twin, to establish differences.

“Currently there is no blood test for fibromyalgia which makes diagnosis difficult,” explained lead researcher Dr Frances Williams from the Department of Twin Research & Genetic Epidemiology. “And treatment is limited, and in many cases unsatisfactory.

“Our research will help patients in two ways. First it will contribute to our understanding of how fibromyalgia – and other chronic pain syndromes such as irritable bowel syndrome – develop – and point to pain pathways, which we may not have suspected. 

“Secondly, we hope it will lead to identification of a biomarker which we could work into a blood test. As well as enabling the condition to be diagnosed more effectively, it could help to ‘stratify’ patients into groups depending on disease severity, which will help in clinical trials of potential new treatments. It might even help us predict how the condition will progress.” 

Fibromyalgia is known to have genetic influences but there are many complicated steps between the genes which are responsible for fibromyalgia and the condition itself. The King’s team hopes to explore these steps in more detail and shed light on the underlying biology of the condition. 

Specifically, this study will focus on identifying markers on the outside of DNA that are associated with the switching on or off certain genes. DNA ‘switching’ is very important to health, as it prevents inappropriate processes from occurring in the body when they should not.

The project aims to assess the profile of DNA markers in healthy and affected twins. If there is a difference between these marker profiles on certain DNA regions associated with chronic pain onset between twins, then this DNA marker could be used as an indicator for disease.

 

Dr Natalie Carter, head of research liaison at Arthritis Research UK commented: “Fibromyalgia is notoriously difficult to diagnose and treat, partly because we know so little about why it occurs and how it progresses. Being able to diagnose it would be a major step forward, and understanding more about the influence of genetics will allow us to develop treatments specifically for people with fibromyalgia in the future.” 

I'm keeping my fingers firmly crossed that they are successful - and soon!!

You can read the full article HERE.

Sick & Tired Of Pills & Potions

It seems that every drug prescribed to me by my GP has little or no effect on my pain. So far this year I have had Gabapentin, Pregabalin, Cocodamol, Naproxen and the latest one Nefopam, none of which make any dent in my pain and all of which have given me more grief than benefit.

My fibromyalgia affects my lower to middle back, elbows, hips and knees, and pain from this is exacerbated by my crohn's disease / IBS symptoms. In a last ditch attempt at finding a treatment that works, before referring me to a pain management specialist, my GP decided to try me on Nefopam 30mg x 2 three times a day. I started them last Wednesday, it is now Sunday. On Friday I had to rearrange a work shift which was due to start at 05:45am to 11:30am as I had experienced extreme abdominal spasms and diarrhoea throughout Thursday. The spasms hadn't diminished by the time I started work, so my six hour shift was spent in total anxiety of another attack. When they came, thankfully, they were bearable. 

Firday night I slept fitfully and was wide awake at 03:25 I got up to visit the toilet at 05:30 and found that I couldn't urinate. I stood for a few minutes, absolutely bursting to go and when it eventually came it was like the pressure valve had been reduced to a slow. burning, trickle. It's still the same today, plus I have a headache - something I rarely get, but when I do I don't do them by halves! It's a stonker! Last night I got only two hours sleep.

So, they have been the side effects of Nefopam, but what about the benefits I hear you scream. Well, there haven't been any benefits except to say that my abdominal cramps have diminished to a mild burning every so often, but I'm putting that down to Buscopan rather than Nefopam.

My GP said that a referral to a pain management specialist was an admission by him that he could do no more for me and that pain management would provide only 'palliative care' ( I thought that term referred to terminal patients only, but perhaps that's what he meant!? ) I felt like saying he'd done nothing for me anyway, but thought better of it.

And so I find myself back to square one on this snakes and ladders game of Fibromyalgia. I'm taking no more of the Nefopam as they've made me feel awful. I'll make do with cocodamol and my TENS Unit until my pain management appointment comes through .

So Many Unanswered Questions

It's been a torrid time this past few weeks and months. My pain levels have been pretty constant - around a seven for most of the time - so I've been feeling quite depressed about life in general and mourning the life I once had really badly.

When I was a teenager I took part in a great many physical activities. Hiking, kayaking, orienteering, rock climbing, mountaineering, abseiling, swimming (to gold life-saving award standard), camping and general sports activities - I was never any good at team sports like football or athletics, but I loved the other stuff. These days I'm lucky to manage a half hour swimming session without completely exhausting myself for days after. 

I'd love to know why. What happened between then and now? Did I cause all this myself through too much inactivity - between 20 and 37 I didn't do much sport, though up until 2010 I went hiking across the moors quite regularly and was a member of my local gym - or did I cause it through overdoing it when I was a teenager??? Was I always predisposed to fibro?  is it genetic? Did some earlier illness cause it? Were the agonising leg cramps I had as a young boy the start of it, or was it the pneumonia I contracted when I was 23?

Will the pain ever stop?

Will I ever be cured?

Will the medical profession find a treatment that works without causing other symptoms or side effects?

There are so many unanswered questions with fibromyalgia.