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 .
I'm currently taking 600mg of Lyrica (Pregabalin) per day as well as 8 cocodamol 30/500mg tablets.
My hip and lower back pain is getting worse.
Obviously the pills aint working, but I'm sick of pestering my doctor, and I can't use the TENS machine 24/7.
Having a really bad time! Will I ever find a medication that actually works without giving me horrendous side-effects??
What works for you?
The 'Knight in Shining Plastic' I described recently (Back Pain - Sudden Worsening)
- the one that arrived just as my back pain became unbearable after it
seized up - has been working brilliantly. I've tried just about every
mode, and program within each mode, and found the one(s) which help the
most.
The unit works by stimulating
nerves and muscles via a small electrical impulse. When on the sensation
feels like mild 'pins and needles', a tingling or prickling feeling
and, if turned up high enough it sometimes makes the muscles twitch.
So
far I've used it two or three times a day on my lower to mid back and, I
have to say, it's an amazing piece of kit. I attach the electrodes to
the points of my pain (in my case anywhere on my back will do) switch on
and away I go. The relief is more or less instant as my pain gives way
to the mild tingling and pulsing of the machine - I can increase the
intensity of the stimulation with a press of a button depending on how
bad my back is, and I tend to gradually reduce this over the course of
an hour until I switch off the unit. Then comes the second of only two
downsides to the machine - the pain returns within a few minutes of
switching it off. (The first 'downside' is the icy coldness of the self
adhesive electrode pads that you have to stick on your lower back!!)
But I can live with that.
A
couple, or even three hours a day with no pain is such an improvement
on twelve years of 24 hour a day pain. The unit is portable so I can
take it with me on trips out to finally 'enjoy' (?) a full shopping trip
with my family, as opposed to grumbling and moaning to them after ten
minutes of pushing the trolley! (Though I reserve the right to grumble
and moan about shopping even if pain free!!)
I've
also tried the unit on my hip pain with equally positive results - when
on full blast I can walk upright, with no limping. I even managed to do
a little 'Dad dance' around my living room with my Daughter. For the
first time in years I felt like a normal father.
I know that it's early days, but based on the results so far my investment of fifty quid has been well worth it!