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.

Counting My Spoons - The Interview

This week I am honoured to have been the subject of an interview by Julie Ryan who operates the Counting My Spoons web site. 

The site has been running a series of interviews (Fibro Warriors) detailing the lives of those affected by Fibromyalgia, and I am one of a number of men who've shared their 'fibro-journey'.

You can read the full interview by clicking HERE

Many thanks to Julie for giving me the opportunity to share my story.