Constant pain

pinkcandyflossprincess

I have ME with fibro.
I have been on a few combinations but the ones Im on now are Duloxitine (works by blocking the nerve signals to brain) and tramadol. I was on codeine but it wasnt working as think id become immune.

at first the duloxitine kept me awake but gradually it settled down (was on amitripline before and that was opposite...made me sleep all day)
I was unsure they were working as although my pain is less, i still had some pain...but have not been very mobile so thought i may not be in pain because of that.
one day id been awake all night due to insomnia so fell asleep and slept all day missing a tablet (duloxitine) woke up and couldnt stand on feet for stiffness and pain and whole body was the same! it showed me that the duloxitine does work in getting rid of a lot of the fibropain so long as i keep taking it and dont miss any!
id prefer to be drug free..i didnt take any meds for years but was awake all night due to pelvic pain and couldnt function, at least now the pain part of my illness is under control.
the duloxitine was prescribed by pain managment, he explained how in fibro and ME that normal painkillers dont block pain so will be inafective on theie own, thats why you need duloxitine etc
gabapentin is sopsed to be even better he said but because i vomit up meds he said i was best on a tablet i only take one a day instead of 4..tbh im happy on this one at the moment

Indie_Kid

pinkcandyflossprincess wrote: »

(was on amitripline before and that was opposite...made me sleep all day)

I couldn't stay awake on this either. And that was even on 10mg.:o

gabapentin is sopsed to be even better he said but because i vomit up meds he said i was best on a tablet i only take one a day instead of 4..tbh im happy on this one at the moment

Gabapentin did nothing for me. I had to beg to come off it. The doctors would just constantly up it when I said it wasn't working.

bll78

Unfortunatly my experience with pain is it's trial and error. I've had amitriptyline, iboprofen, codine, naproxen, Kapake, gabepentin, lyrica and all sorts of other combinations. None worked.
Then totally fed up I saw a GP who suggested I asked the pain consultant if I could try Butrans patches. The pain consultant was about to discharge me because there was nothing he could do when I asked for the patches. He agreed that it might be worth a try even though he couldn't see how it'd work on Neuro pain. I saw my GP the next day and started them. We had to play with the dose, but within a few weeks I went from being unable to sleep, walk or even sit, to being virtually pain free. Within 3 weeks I was back at work.

A few years down the line we've had to alter up the frequency of the application of patches, and I have break through pain but I am still 90% better than I was on all the other meds. I didn't realise until recently but the patches actually give me a constant dose of morphine. To me it's like a miracle drug but others say its useless. Don't give up just get your doc's to keep trying new medications until you find the right one.

pinkcandyflossprincess

Indie_Kid wrote: »

I couldn't stay awake on this either. And that was even on 10mg.:o
that was my dose too:o M.E people are sopposed to be sensitive to meds so that may be why


Gabapentin did nothing for me. I had to beg to come off it. The doctors would just constantly up it when I said it wasn't working.

i think its trial and error, each drug seems to work different on each person

lemontart

ooher the minefield of pain relief. There are no simple answers, like others here I have cfs/fibro but also disc disease in spine at either end, now complicated by muscle wastage due to intense pain limiting and effecting the way I move . Resulting in bouts of paralysis of legs and lost of sensation at times, Now finally on waiting list for physio to counter this. Was put on Galo wossit few weeks back, all they do is make me feel bad as if I was not bad enough with the unpredictability of cfs symptoms.

I am hyper sensitive to many meds now so cannot take opiate base pain relief..

I do hope one day to get back to some level of predictable normality but who knows. Just making best of the good days or hours I get

Indie_Kid

pinkcandyflossprincess wrote: »

i think its trial and error, each drug seems to work different on each person

This is true. Mum takes Amtitriplyne and has no such issues with falling alseep on it. She called me a wimp.:p

But I do have something completely different and do have issues with reacting to almost every single drug I'm on. Currently on Topamax and appear to have finally stopped wanting to vomit.

dori2o

pinkcandyflossprincess wrote: »

i think its trial and error, each drug seems to work different on each person

Or as in my case not at all or only very limited relief given.

Unfortunately for many the only substantial pain relief they can get is from illegal drugs, so each time they need relief they chance being arrested for posession an illegal substance.

I've recently been reading research documents concerning the work being done regarding chronic pain and the use of low dose MDMA. It all looks promising but it's unlikely ever to be looked at here in the UK given the draconian way that drugs in this country are dealt with, even when it's clear that some of the higher class drugs have many beneficial qualities that could, and should, be used to provide patients with relief/a better quality of life.

It's completely and utterly barmy when you consider that someone using cannabis to manage chronic pain is potentially liable to prosecution if caught in possession of the drug, and yet in every hospital up and down the land there are thousands of people being injected with Heroin.

benniebert

dori2o wrote: »

Or as in my case not at all or only very limited relief given.

Unfortunately for many the only substantial pain relief they can get is from illegal drugs, so each time they need relief they chance being arrested for posession an illegal substance.

I've recently been reading research documents concerning the work being done regarding chronic pain and the use of low dose MDMA. It all looks promising but it's unlikely ever to be looked at here in the UK given the draconian way that drugs in this country are dealt with, even when it's clear that some of the higher class drugs have many beneficial qualities that could, and should, be used to provide patients with relief/a better quality of life.

It's completely and utterly barmy when you consider that someone using cannabis to manage chronic pain is potentially liable to prosecution if caught in possession of the drug, and yet in every hospital up and down the land there are thousands of people being injected with Heroin.

Why should people want to use cannabis in that way anyhow? Morphine (Heroin) is commonly prescribed by GP's in doses up to and over 100mg every 12 hours as MST. Genuinely, if you took say 100mg of MST every 12 hours + Oramorph for break through control, you wouldn't be feeling a thing!

dori2o

benniebert wrote: »

Why should people want to use cannabis in that way anyhow? Morphine (Heroin) is commonly prescribed by GP's in doses up to and over 100mg every 12 hours as MST. Genuinely, if you took say 100mg of MST every 12 hours + Oramorph for break through control, you wouldn't be feeling a thing!

Really????

Care to explain then why it is the case that I have been on MST (got upto 120mg twice daily) and also on Oramorph 20mg every 3 hours at the same time and I had a less than 5% reduction in pain?

I‘ve tried everything that is generally prescribed for pain, plus others including Ketamine, Methadone and Buprenorphine, and as yet I‘m still to find an effective medication that provides me with more than a 5% reduction in pain, or lasts more than a few hours (the minimal relief that the12hr release morphine gave lasted a little over 4 hours only)

The only thing that provides a significant period of relief (not total relief but enough to provide respite an lasts approx 90 mins) is cannabis.

I use it at night when no matter what I‘ve tried I can‘t get to sleep because of the pain.

Indie_Kid

dori2o wrote: »

Or as in my case not at all or only very limited relief given.

Same with me. I can't take most medication because of what else I take. (I think - either that or because I have asthma) I'm currently on the only thing that vaguely works and there's nothing more they can put me on.