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 .

Pills and Potions Not Working - Help Required.

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?

Pregabalin Update

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.

Pregabalin (Lyrica)

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?