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.
Having an invisible illness seems to lead to other invisible illnesses.
I have fibromyalgia. I also have IBS / Crohn's Disease. As my fibromyalgia was diagnosed first I assume that the anxiety and stress that placed on me, both at home and in my work, led to the turmoil in my guts. And it's been that way ever since.
Almost thirteen years have passed since I was first diagnosed with fibromyalgia and, in that time, I cannot remember a day when I didn't have symptoms from it. Of course it ranged from mild to moderate, moderate to severe, but always there. After four years of constant pain I eventually began to experience symptoms of IBS which, I assumed, were related to the lower back pain and I instantly thought I had cancer. After many weeks of putting it off I eventually went to see my GP and after a few more tests I was diagnosed as having Crohn's Disease an incurable inflammatory bowel disease. Oddly all tests since initial diagnosis have shown no inflammation so my gastroenterologist has 'downgraded' my condition to Irritable Bowel Syndrome - but it affects me no less because of this downgrading!
So, having lived with chronic pain for almost thirteen years and bowel disturbances for the past eight and a half years, I thought I'd had my quota of 'invisible' illnesses but it appears that I was wrong. For the Gods have decided to test me, yet again, to see how I cope with another layer of invisibility.
This new invisible illness came out of nowhere - as did the other two - but rather than hit me with symptoms all of a sudden - fine one minute, stricken the next - this cloak of invisibility crept up on me over a period of about two weeks. I'm talking about depression.
Obviously, when you live with chronic pain 24/7 for 365 days a year you're going to have times when you feel a little down and fed up with yourself. I've experienced times like that before but I've always snapped out of it fairly quickly and resumed as "normal" a life as I could under the circumstances.
But this depression has gone much deeper than my previous bouts of 'fed-uppedness' (if that's a word?) This depression has really knocked me for six. This depression has been the most invisible of all of my invisible illnesses - with fibro and IBS my family and work colleagues can see me physically wincing with pain or running off to the loo or holding my guts - sometimes they can hear my symptoms too, so as far as invisibility goes they're somewhat apparent to the outside world.
Depression is a whole new ball of wax. Externally there is nothing to see. I laugh at funny TV shows, I act the fool and joke around at home and make pleasantries with my customers and colleagues at work. My face and body show no outward signs of being ill.
In my head I want to explode. I want to shout at people who annoy me - the ignorant customers who don't say please and thank you when I have to fawn over them like they were royalty, the stupid ones who change their mind halfway through a transaction or wander off to get something else leaving me with a growing queue. I want to curl up into a little ball and hide away instead of facing these people. At home I join in because I have an obligation to do so, not always because I want to. I'm short tempered with the ones I love most and I hate myself even more because of it - and so it builds up and up and up until, one day, I know it surely must explode. Yet all the time I fight it so that, externally, my face looks 'real' and 'normal' just as I've tried to hide my chronic pain and gut turbulence for so many years. I try to be a valued member of society but I value myself less and less each day - I feel unworthy of praise, of love, of life itself. Things I love to do are being abandoned - art, drawing, photography, cooking for my family all feel like the most arduous of chores now whereas, six weeks ago, they were my life.
Depression is the most heinous of invisible diseases because there isn't a scrap of evidence of its existence. It's all in my head. I should snap out of it. I should think positively. It could be worse. I could be paraplegic - all the things we're told never to say to someone with depression I've told them to myself over and over again - and it's right they are definitely the wrong things to say to someone with depression because I can't snap out of it, or think positively and it couldn't be worse (surely) and I'm sure most paraplegics feel the joy of life sometimes and I know it's all in my head because it's a mental illness, to do with the brain, which is found, in most people, in the head!
I have not, as yet sought treatment for this depression, prefering to try and fight it myself - but I think I'm losing the battle. My reasons for not seeking treatment are that my GP thinks I'm a malingerer already and I'm worried about the side effects any medication might have on my already feeble guts. I know in my heart what I need to do - I've told many people in my position in the past to get treatment as soon as possible so I'm going to have to bite the bullet........ before I take a bullet.
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 .
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.
I've been taking pregabalin (Lyrica) 150mg twice a day for about six weeks now and, if I'm honest, I can feel no benefit with it. The pain in my right hip is still as bad as ever and my lower back pain is still like a toothache - constant throbbing and sharp stabbing pains when I move a certain way or bend to pick something up.
I called my GP today for advice and he suggested I take two 150mg doses twice a day - what he seems to forget is that the last time I was on the higher dose I got horrendous dizziness - no good for me in my everyday life or my work life. I told him this and he replied by saying 'Well, if you're not prepared to try again there's very few options left open for you.'
I feel like a guinea pig for the drug companies as it is. However, to make my point I'm going to try to take 600mg per day again - just for one month to see if a) It works on my pain and b) I get the dizziness again (which I'm almost certain to as I get it mildy on my current dose of 300mg per day)
I have so many suggestions for treatment that the doctor could try and, if I have to make another trip to see him about my medication reactions, I'm going to take the list with me. I know a few adversely interact with other meds I'm taking, but there are others that he could try - if he can get over the shock of the cost to the NHS!!
(Another side effect of pregabalin is weight gain - but that doesn't phase me as I've been underweight for years - it's the dizziness that gets me most.)
Wish me luck.
I mentioned a while back in this blog that I was on Pregabalin (300mg twice daily) - well, I started to get an unwanted side-effect: extreme dizziness, which was making working and even standing up unpleasant and/or uncomfortable so three days ago my doctor switched me onto Gabapentin (100mg three times daily) and as soon as I started taking them I started to get the symptoms of a flare up of my Crohn's Disease. Horrendous stomach cramps, diarrhoea and nausea, and last night I thought I was going to have to go to the hospital because of them.
I'd managed to get through the day in relative discomfort and in the evening had (just about) managed to get through my shift at work - though I was clearly under-par, I got home at 11.30pm and went to bed but couldn't sleep because of the pains inside. At 3am I was on the toilet trying desperately not to pass out. The pain in my gut was unlike anything I'd had before. I was considering calling an ambulance when it dawned on me - could it be the new tablets?
I don't usually read info leaflets in tablets and in any case there hadn't been one with these new ones, but the pains were so bad I had to know if there was a link so I searched "side effects of Gabapentin" This is what I found:
Common: More than 1 in 100 people who take Gabapentin
- abnormal gait
- abnormal laboratory test results
- abrasion
- accidental injury more likely
- acne
- back pain
- blood and bone marrow problems
- breathing difficulties
- bronchitis in children
- changes in appetite
- confusion
- constipation
- convulsions in children
- coordination problems
- cough
- depression
- diarrhoea
- difficulty sleeping
- double vision
- dry mouth or throat
- eye or eyesight problems
- feeling anxious
- feeling nervous
- feelings of hostility
- flatulence
- flu or flu-like symptoms
- fractures
- general feeling of being unwell
- headaches
- hyperactivity or aggressive behaviour in children
- impotence
- indigestion
- infection of the ear in children
- inflammation of the gums
- itching
- joint pain
- memory problems
- mood changes
- muscle twitching
- muscle pain or tenderness
- nausea
- oedema of the extremities
- pain
- pharyngitis
- raised blood pressure
- reflex problems
- respiratory tract infection in children
- rhinitis
- sensation changes such as paraesthesia and hypaesthesia
- skin rash or rashes
- speech problems
- stomach pain
- swelling of the face
- tooth problems
- tremors
- unexplained or unexpected bruising
- unusual thoughts
- vasodilatation
- vertigo
- vomiting
- weakness
- weight gain
(I've highlighted every side effect I experienced during the last 48 hours)
The stomach pains, flatulence and diarrhoea still haven't subsided and I've vowed to myself to never take another Gabapentin. So it looks like another consultation with the quack when I can drag myself away from the toilet! Looks like I'm going to have to manage with just cocodamol for the time being.
I've been taking 600mg of Pregabalin every day for the past six weeks. 2 x 150mg tablets in the morning and two at night.
Initially they worked just fine - though I did notice that I suffered mild 'light-headedness'. But in the last two weeks at this dose the light-headedness has intensified to the point of swooning dizziness. It really feels like my head is about to lift off or I'm going to fall over - especially when turning my head any faster than a tortoise!
I've also noticed that I've developed tremors - in my hands, legs and shoulders.
The medication is prescribed for chronic neuropathic pain and can affect the central nervous system, so I was half expecting a mild form of these side effects, but these have now become troublesome - to the point of losing a shift at work - so I've decided to wean myself off them and go back to see the quack.
The tablets have helped with the pain a little - in the sense that they've probably numbed my brain to it!! (Which, I suppose, is what all pain relief does!!)
I hate messing around with medications, but until the doctor gets it right I suppose I'm going to have to be a human guinea pig for a while longer.
I wonder what side effects others have had on this medication?
