I really, desperately hope someone can give me some helpful advice.
I have no idea what else to do, where to turn, I have NO help available to me and really can't take anymore.
I tried to make this as short as I could but I'm really sorry that it's still a pretty long ramble and appreciate sincerely anyone taking the time to read.
I've got several conditions which cause me chronic pain and pain management has always been a huge part of controlling things. Somehow I lasted the first 3 years simply managing on dihydrocodeine which I never really took because it did not help my pain in the slightest. Even after a few months where I would take it consistently I could stop it suddenly and suffer no ill effect.
I also end up in hospital with nasty flare-ups about 6-8 times a year where my pain will be treated with IV morphine
, 10mg/4 hours and am able to leave each time taking nothing for pain and be ok.
Each time (I have to travel a very long way) I've been to see my consultant gastroenterologist (and this guy is the best in the country regarding my conditions) he has put me on targinact (extended release oxycodone
with naloxone), buprenorphine
sublingual) - both of which I never took and never once ordered a repeat prescription because I did not want to be on opiates
So when he then suggested Fentanyl
and Oxycodone I just said no outright and chose to bear the pain (though some days it really is impossible to function at all). But then I always had the option of strong opiate
analgesia for these occasions.
Rewind 11 months and some other things thrown in made my pain really intolerable. I'd very rapidly built up to 300 - 400mg dihydrocodeine per day with no real benefit and my Doctor started me on Oxycodone IR. From the outset I was on around 350mg/day and a hospitalization had me on IV diamorphine and started me on transdermal fentanyl, 50mcg/hour rising to 100mcg in less than 1 week due to my lack of response.
On discharge I was on a 100mcg fentanyl patch 72 hourly and around 350mg of oxycodone for acute pain.
Unforseen circumstances left me away from home where I had ran out of oxycodone completely and experienced my first real opiate withdrawal - which I honestly thought was going to kill me and completely naively and stupidly led to me doing something really stupid (I really did think I was immune to all opiods at this point and that nothing even "affected" me.. how that stupid, stupid look on things should have cost me my life.
I was suffering severe withdrawal
despite having the fentanyl patch on. About 4 days into having had zero oxy, I took an unused patch thinking "if I only expose this for a couple minutes to get some of this into my brain buccally, it is going to put these symptoms at bay".
Those mere two minutes were too much and miraculously I was staying with a friend AND the paramedics were only stationed around the corner and got to me in around 4 minutes of having a respiratory arrest. I don't know how my heart didn't go; I had no pulse, hadn't breathed in about 5 minutes, was completely blue and whatever other stats were taken (oxygen?? I can't remember what my doctor said) but it should have been a fatality.
I owe my every breathing moment to these paramedics. They got right to me with resuscitation equipment and naloxone - which kick started my brain back into starting. I am mentally tortured by this every single day and almost feel guilty for being alive. I was even released from the hospital on my usual opiate regime but from that point on was terrified of fentanyl and felt it was one giant dance with the devil. When I got home I begged for some kind of help to reduce my opiate use. But now I feel that's the biggest mistake I've ever made.
Unfortunately where I live, the help available is of an almost non existant, unacceptable standard. Because of that I found myself "working" with a totally inexperienced bully who demonstrated she doesn't know the first thing about opiates. I was initially cut down to 80mg/oxycodone a day (which was not supposed to be touched.
My concern was the fentanyl.) and forced to reduce the fentanyl every 3 days. Repeatedly I said how ill this was making me, that 3 days was nowhere near enough time for my brain to even adjust to the new dose, never mind ready for ANOTHER cut. I was ignored and told "this is how it's going to be". In permanent inter-dose withdrawal from an absolute joke of a taper.
3 weeks of this was more than enough and the bullying from this nasty woman was beyond out of order. I wasted an hour and a half of my time again raising all my very genuine concerns: mostly the stress on my GI tract: how w/d was exaggerating my symptoms way more than if I didn't already have severe GI problems and terrified of the flare ups this opiate withdrawal caused me.
After being mocked for the final time I said no more and I'd be taking legal action. To which I was laughed at.
A huge problem was my dr had left. So I got a new one and told him everything. He took my sincerity and honesty exactly at face value and suggested 75mcg fentanyl and 120mg oxycodone as maintenance dose which I was more than happy with. By the time I reached the pharmacy with my new scripts this nasty snake of a bully had somehow totally manipulated him and had him call to cancel it.
I couldn't fucking believe it. The fact this ONE stupid, NAIVE incident that I was completely honest and open about because I do not abuse drugs
and have never taken anything not prescribed other than the fentanyl incident. But now it's going to go against me the rest of my life and I will be constantly reminded and made to suffer. (The new Dr told me I can look forward to living the rest of my life in debilitating pain now after this bitches interference.)
I was forced right onto nothing. From pretty much 100mcg/hour fentanyl as my brain never stabalised to any reduction and 80mg oxycodone (also cut down from 350) to absolutely nothing. From that I was written up for one 60mg morphine sulphate (ER) then 30mg the next day then NOTHING. The most useless oral medication ever..how does anyone go from taking a pounding of around 3 and a half thousand mg morphine equivalent a day to like... one mg an hour for 2 days only, plus a next to nothing oral bioavailability. I can not get my head around how this is allowed. But it is.
That was 16 whole days ago and I know this is going to sound nuts but it's what brings me here in desperation: I am still in full blown withdrawal. I'm being serious. It has not got any less severe or brutal. And I've had enough and can't do this anymore.
The worst is the chilling aching pain that is right into my bones. It is there all the time and it's ridiculous. That and the constant, daily vomiting and diarrhea (IM anti sickness injections and all the loperamide
in the world have NOT helped). And I'm being very serious, inability to sleep and the absolutely horrible restless leg syndrome..which feels like it is affecting my entire body.
I have all the minor things too like constant yawning, sneezing, watering eyes and nose but these are inferior.
And the god damn anxiety.
Now here's why this may be a lost cause. I have NO help. It's like this whole thing is not even up for debate and I should just shut up cos no one will listen if it's about opiates..whenever I've tried going to the drs.
To think there are things out there that help this and I won't even be given them. I don't see how anyone is losing anything by giving me lofexidine
and something to help all the anxiety and sleeplessness.
I have NO energy. I can't even walk for 15 minutes without feeling like I'll faint. I'm useless right now and this feels like it is never, ever going to end. Is there anything anyone can suggest to help me because I'm honestly at the end of the road and really can't take this suffering and sickness any longer.
I thought with both drugs, the w/d would be very abrupt and severe but short as the oxy has such a quick half life, and the fentanyl relatively short at 17 hours. 16 days it has been. What in the hell is going on .. it's not even like I was on these for very long.
I thank anyone that took the time to read all of that and if anyone has any words of encouragement they are very much appreciated.
Oh I should also mention I am on Gabapentin
which before these opiates controlled my nerve pain well. 900mg doses right now still leave every single cm of my body shooting in pain.
And I've been on clonazepam
for 5 years (unfortunately alprazolam
is unavailable on our nhs) so all anxiolytic and sedative effect of benzos
is long long gone for me.
neverspeakagain added 31 Minutes and 18 Seconds later...
edit: sorry for the typo regarding daily morphine equivalent, don't know where I pulled that from. It should say 24 hour average of 1000mg.