Hi, this is my first time ever posting on any site and am quite nervous. I hope someone can help or advise what to do.
I’ve been taking oramorph now since March 2010 and I am also taking 60mg a day of OxyContin. But I am still in so much pain I have to take extra oramorph and 400mg ibuprofen tablets in between. Most nights I can’t sleep even after a cocktail of medicine as I’m on diazepam and sertraline as well.
Some nights I start drinking vodka just in the hope it will send me to sleep but it’s normally about 3am before I drift off. And then I’m up again at 9am for another dose of medicine.
I’ve been told by different doctors that I need to stop my oramorph but they don’t offer anything to take instead. I hate to think what all this is doing to my insides, but I just want the pain to go away.
Sorry for such a long post and any suggestions would be appreciated
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24_7_pain
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Sorry, this turned in to a very long post. I hope some of it's helpful!
What is the nature/cause of your pain? That's going to effect how best to deal with it. Do you take paracetamol? It's often underestimated as a painkiller. It won't be anything like enough by itself, but pain control by medication is best done as a pyramid, starting on the bottom step and then going up as needed, while still continuing with the steps below too (like regular paracetamol and ibuprofen). How constant is the pain? Because if its there all the time then a constant low dose of medication may be better - you can achieve this with opiate patches, which stay on your skin for a week and emit a constant flow of medication. Maybe ask your GP about substituting these for the oromorph? Another possible oromorph substitute is tramadol, which is partly an opiate-receptor painkiller, but also blocks other pain pathways too.
Depending on the nature of your pain, there are other drugs that aren't strictly painkillers but which might still help. If the pain is nerve based then drugs like low dose amitriptyline or gabapentin may help. If its inflammatory then moving up to a stronger NSAID might work.
Whatever else you do, I very strongly recommend that you ask your GP to refer you to a pain specialist or chronic pain clinic. They are much better equipped to help you than your GP. They may also be able to to key you in to other helpful avenues. For example, my clinic has a psychologist who specialises in chronic pain and I found seeing her very helpful. I still need lots of strong painkillers, but I added some useful non-drug coping techniques and was able to deal with some of the emotional anguish that being in pain all the time brings.
Finally, I REALLY understand what its like to just want the pain to stop, at any cost, but some of the combos you're using sound worrying. Alcohol doesn't go well with either opiates or diazepam and the 3 together could be really dangerous. Is there someone else in the house with you who can make sure you're ok when you take all of these? The other problem with opiates or diazepam (especially diazepam) are that if you take them all the time you can become tolerant to them and they won't work as well - this is something to keep in mind.
My thoughts, best wishes and genuine understanding of what you're going through are with you. If you have any other questions you think I might be able to help with, or you just need to vent, please do message me.
First off I live with my mom still so she monitors how much I drink which is probably quite a bit less than if I was able to get out on a weekend.
My official diagnosis is bilateral hip dysplacia which I’ve had since I was 9yrs old (31yrs now). My right hip was replaced 4yrs ago, but the muscle wastage is so bad I still can’t stand on it unaided. My pain is 24/7 coming from back, hips, knees and now signs of arthritis in hands. I use a wheelchair when out and a Zimmer frame in Home but I still fall over on a regular basis.
Thankyou Purple_Lady for your advice I will be seeing my go soon so will ask about the medications.
Yet another massive post. Again, I hope at least some of it's useful...
No wonder you're in so much pain. That sounds truly horrendous to have to live with, even more so since its been with you so much of your life. You're pretty much the same age as me and I've been living with pain for 7 years now and that's been more than long enough. I've been thinking about what you told me in your message and would like to offer some (hopefully) more specific advice. I'm not a medical professional, just a chronic pain sufferer who has personal experience of trying to treat it and has done a fair bit of research on the subject - so please ignore these suggestions if they're unhelpful.
With pain as severe and constant as yours, it definitely sounds like you would be a good candidate for a transdermal (opiate) patch. Your doctor can calculate how much opiate medication you're taking in a week and then prescribe a patch which gives you the equivalent weekly dose (or it can be increased as necessary), but as a constant infusion. Normally they are used to control the background pain, then you take paracetamol and oromorph (or similar) for breakthrough pain, as needed. The patches can effect awareness and balance though, which might be an issue for you.
From your description of what's causing your pain, it also really does seem that switching from ibuprofen to a stronger NSAID could help a lot. They work in a different way from opiates and can be taken alongside them. NSAIDs are specifically used for pain caused/exacerbated by inflammation, especially arthritis and joint pain. They do have side-effects, but not nearly as many as opiates, they don't cause addiction or tolerance. Two commonly used options are diclofenac or naproxen, but there are lots of others and this is something that a specialist should be able to help you with.
It's understandable that doctors will want to reduce the opiates you're using, especially as they are under increasing pressure to reduce opiate over-prescription and to be alert to the possibility of addiction. My approach would be to calmly (I know how hard that can be) state that you're not taking the medication because you want to, but because you're in agony, due to well documented physical damage to your body. I would then say that I was happy to explore other options for pain-relief, but not for the drug to be simply stopped without any substitute.
I really REALLY recommend seeing a chronic pain specialist (some anesthetists have this as a sub-speciality) though - they will be better equipped to help you with this specific problem than a specialist in your actual disease.
I would also consider non-drug options as well as (not instead of) medication. Physiotherapy might be able to help with things like regaining muscle strength, which would indirectly help with the pain. You might have already tried this, but even so it might be worth trying again, if you can find a really experienced practitioner who has treated people with similar problems. Has somebody been to assess your house for adaptations that might help you cope or reduce your risk of falling? I found that something as simple as a shower-seat helped me a lot. If you're based in the UK, I can give you more specific advice on how to get an referrals/assessments etc, but I'm afraid I can't help with this if you live elsewhere.
Finally....(hooray), as I said before, don't dismiss the idea of getting psychological help too. NOT instead of the meds, or because the pain's "all in your head" - it's not. Partly because there are coping techniques that a specialist psychologist could suggest than can genuinely be helpful. But also because living with the sort of pain and disabilty you describe is hellish and causes a lot of mental anguish (and, speaking personally, despair). Even non-specialist therapies like counselling can help with that.
I do live in England and I think I have every adaption possible. Because I live in a council house they have dealt with most things from ramps at the doors for my wheelchair, stairlift and even put in an adapted shower/wet room. To be fair they have been really good.
I have been thinking a lot about changing my medications but even though the patches would probably be better for me I’m scared of the new medication not working and they probably wouldn’t put me back on the meds’ I’m on now because of how long I’ve been on them. I just want the pain to go or even if it was like a dull ache or something it would be better.
Not really feeling in a good place at the moment. I received a copy of the letter my consultant sent to my doctor basically trying to say that because I suffer with depression and anxiety and that they can’t find where my pain is coming from it just must be all in my head.
Both me and my mom know that when I’m sat on the floor crying uncontrollably that the pain is very much real. Sorry for ranting but it just makes me feel so angry. If only they could spend a day in my shoes.
Sorry for the long post, thankyou for taking the time to read it.
Hey, it's ok to say how you feel. Look, this 'all in your head' in very old thinking! The top clinicians are aware now that there is a link with depression and chronic pain. It's ok. You will need to see another dr as the one you see is not up to date. I know this because I have been reading about the connection this week. Keep fighting! I have to see my dr in an hour and need to explain I had to double up his suggested dose! Not fun! Keep talking to me...ok.
Sorry to hear of your troubles. If you did not feel the consultant with the 'off' letter heard or did not understand you remember we can be 'consumers' and choose another consultant - find the money to get a private one if needed. Find someone else medical to help that you feel comfortable with. I see purple lady has given some really good advice.
I did want post to highlight you may be able to 'swap out' or rotate to another pain medication. It might be the form of a patch , or it might be another oral opiod medication that is different to the ones you are on now. It is my understanding that the receptors get 'used' to a particular type, so in pain management they are routinely 'swapped out'. That is a way of going past the prospect of ever increasing dose for someone diagnoised with intractable pain who is so young. If the long acting pain medication is doing it's job, you should not need to be going up and up on the short acting one.
As to the drinking - thanks for sharing this. It can be very dangerous, even at low levels. Its hard sometimes but please be careful, you are young and have a life to live, even though it may not feel like it some days.
The drinking is also possibly a part of the signs that your current med combination is just not working anymore. I hope you find someone to help so you can get some quality of life again with right medication combination and all the other things that are a part of half decent pain management. Dont give up - you have a life to live and a genuine human right to have your severe pain managed. It is unfortunate of the stigma of opiods for those that genuinely need it to function because some people misusing them. Best of luck with things & thanks for posting
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