Advice appreciated
Thanks for this thread. I've read the entire thing and feel some comfort just knowing that other people have similiar issues. In fact my pain does not seem as serious as many people in this thread who appear to be coping better. I wonder if anyone has any useful advice.
I'm a 25 year old who for the last 4 years has suffered from chronic gut pain. It varies in intensity but when it's bad it feels like there are dozens of hot knives pressing on my diaphragm while someone is melting led in my stomach, pummelling my abdomen and grabbing a fistful of bladder to pull and twist. Fortunately, it doesn't get this bad all that often, and mostly it's the chronic nature of the condition that I find hardest to deal with, rather than the physical pain at that specific time.
I've had every physical investigation possible (including some pretty cool ones - my favourite was when I had to swallow a pill with a camera in it). They haven’t found a physical explanation for the pain so at this point it’s probably fair to say I expect the issue to continue indefinitely.
I have a pain management doctor, who has tried pretty much every random thing he can think of: antacids, anti-inflammatories, antispasmodics, SSRIs, SNRIs, tricyclics, Pregabalin, various other things. I’ve also tried some pretty creative treatments through him, including bio-feedback and acupuncture.
None of the above provide effective pain relief, and some of them increase the pain.
I have also been prescribed Dihydrocodeine and Tramadol for the last 3 years.
The codeine became a bit of a problem. The pain is chronic so I found it very difficult to ever have a reason not to take codeine, even though all it did was take the edge off. As no doubt people reading this are aware, when you spend your life feeling like someone has put a hook in your gut, twisted it and started pulling, thoughts of potential tolerance and dependence seem less tangible than moment to moment living.
But tolerance and dependence apparently still exist. I was supposed to take 60mg of codeine when needed, but found myself taking 250mg at around 7pm every night. My days became a bit of a codeine roller-coaster – I’d start to get a headache around 3pm, be biting people’s heads off by 5pm and really itching for my meds by the time I took them. I was obviously taking more than the doctor prescribed me so I found myself doing ridiculous things, lying to friends about why I couldn’t see them and travelling all over town on my own trying to find pharmacies which would sell me a bottle of codeine linctus.
I was taking Tramadol throughout this time but it never became problematic: it messes with my emotions too much for me to want to take it frequently.
Anyway, the height of the codeine thing was around March last year. I tapered down incredibly slowly (I was reluctant to stop) and stopped taking it completely in December. Obviously the pain is still there and since December things have been quite difficult. I’ve slept fitfully and sometimes not at all, had to cancel nights out and even a trip away because I just haven’t been well enough to do much except lounge around the house. Having said this, I have had 2 or 3 good nights out. The problem is that the pain varies in intensity and when it’s bad, there’s little I can do.
I’ve been taking Tramadol occasionally after it gets really bad – but it stops me sleeping at night, and if I take it in the day there’s no way I can go to work, and I hate taking sick days, even though if I go in at my worst I might as well not be there. I’m starting a new job next week and I’m concerned about this as I need to make a good impression.
I’ve also been taking diazepam and particularly zopiclone occasionally to improve sleep – basically if I get some sleep, I can deal with the pain in the day most of the time, although it still makes me feel like shit. But with each of these, there has been quite rapid dose inflation, and I’m reluctant to go down the same road as I did with codeine. Definitely not a long term solution.
I’m basically done with the codeine now – it doesn’t actually decrease the pain a great deal and seems to cause more problems than it solves. I hate the daily codeine rollercoaster and never want to go back there. I think I’ll occasionally take it when I recreationally take tryptamines, as they give me an intense awareness of body pain and it seems to help with this and make the experience pleasant rather than painful. But this will be like once a month.
The pain management doctor thankfully doesn’t know I’ve had any issues with codeine. He offered me stronger opiates a few months ago but I said no. If I have problems with codeine and the pain is chronic, I can’t imagine that other opiates will be a good idea.
In the last month, I’ve taken up mindful meditation. I don’t know if it’s working yet – I guess it takes a while.
At the moment, I don’t think I can live with just Tramadol because while it provides effective pain relief, I can’t practically take it very often. A couple of times since coming off codeine I’ve found myself extracting morphine from several bottles of Kaolin & Morphine mixture to decrease the pain and get some sleep. I don’t think this is a good solution.
I suspect that – if the meditation doesn’t help me manage the situation better – I need to go back to my pain management doctor and explain some of this. I’m reluctant to go near issues of dependence, given that thankfully at the moment I am not physically dependent on anything (a real relief to be able to say this), and responses in this thread confirm my suspicion it would make accessing legitimate pain relief much harder.
I suppose I ought to ask the doctor for an alternative to codeine or Tramadol that I can actually take. But if I won’t take Tramadol in the morning because it clouds my judgment at work, are there likely to be any feasible opioid alternatives out there? I saw someone mention time-release MS Contin – would this be a good solution? Even if it were, am I not likely to suffer from the same issues of tolerance and dependence as I did with codeine?
Any advice appreciated. I’m in the UK, if it makes a difference.
P.S. I hope this doesn’t seem melodramatic. I know others have more serious pain issues and are dependent on stronger opiates and for many my complaining about codeine dependence will seem ridiculous. But for me it has been and remains a big deal. Also, sorry if this is too long. Don’t really get to talk about these issues very often.
