To ask for medication advice

[lilytuckerpritchet]

Hi anyone with knowledge of acute back pain and painkillers please advise.

I have a prolapsed disc and arthritis in my lower spine in November I was admitted to hospital in extreme pain.

Since November I've been taking 2 x 150mg tapentadol (opiate painkiller stronger than tramadol not as strong as oxymorphine )
8 paracetamol a day
My pain was at a ten when I was put on these meds over two months it's has gone to a much more manageable 2-4.

Saw a orthopaedic consultant 3 weeks ago who said to reduce tapentadol by 50 mg and continue reducing and also bring in ibuprofen. I started the ibuprofen which seemed to have a positive effect. Then about 10 days later I reduce tapentadol. My pain got worse going up to between a 6-8.

I saw a different consultant at my next appointment who said to stop ibuprofen as I shouldn't take it for more than 3 weeks. And to see gp about taking a different opiate alongside tapentadol with a view to dropping tapentadol eventually.

From experience my gp doesn't seem to know much about my meds and I have to wait two weeks to see someone. I've tried asking GP reception for someone knowledgeable but they just say no one is a specialist.

Anyone have any experience of long term opiate use and reduction. ? I'm shocked at how quickly my pain level has risen so naturally I'm reluctant to reduce further but equally I'm aware of the dangers of staying on opiates long teen.

Side note I'm also accessing physio therapy through hospital.

My GP has put me on buprenorphine patches so a strong opiate as they say it is best to have consistent pain relief rather than the highs and lows of tablets.

I am also prescribed up to 8 codeine 30/500 mg per day but try and limit the amount to 3.

In addition, a muscle relaxant.

I worry about opiate addiction but each time I raise it the consultant and GP say it is fine and to ask if I want more. I can still reduce the amount of codeine if I have had a quiet day so I hope that means I am not too addicted.

Everyone seems to say it is ok to have opiates long term if you need them - including the physio I see.

I think you will get different answers from different GPs, consultants and other posters and it's best to navigate what works for you.

I try to keep the pain level to a 5 to 6 when I walk - based on how I felt when I broke my leg years ago - that works for me though I suspect I could get prescribed more but I hate the side effects and trying to reduce down too far just means you are less mobile

The best place for getting your pain under control and great advice is by asking for a referral to a pain clinic. They have access to pain specialists and other therapies that may help you.
In general opiates aren't likely to be addictive if you only take them when you are in pain and at the lowest dose that controls it. It's likely that you won't be completely pain free but ideally you need to get it down into the moderate range, most of the time.

Also if you are prescribed any NSAIDs long term, you need to ask for a PPI like omeprasole to protect your stomach from ulcers. Some doctors only prescribe it after you start having problems with your stomach and it's too late then.

As a PP says I would look to push for a referral to a pain clinic to, hopefully, get the best advise. My husband is dependent on opiates for very similar issues. It's a very real thing to become dependent as I'm sure you know. He doesn't describe himself as addicted as he has no desire to take them but his body depends on them. It's a real minefield reducing opiates and it must be done properly.

I am on buprenorphine patches 35mcg. Been on them for about 7 years. Tried increasing to 50mcg but made no difference so it seems my morphine receptors are maxed out. Ditto tried oromorph which didn’t do much.
Had been on naproxen (another nsaid) for about 6 years and it helped a lot initially. Was also on max dose of paracetamol and 80mg amitriptyline.
However I recently tried my own experiment by stopping one med at a time because I was in such pain I wondered if anything was actually still helping.
I found the paracetamol and naproxen no longer worked so gave those up.
Buprenorphine does help so continued this and the amitriptyline.
As regards addiction, although it is not advised to stop opiates abruptly I am afraid this is exactly what I did and I had no withdrawal affects or craving to continue. I believe buprenorphine is considered less addictive, or perhaps I am just lucky not to have felt this.
I would however warn against long term nsaid use, not just for the potential stomach damage but ironically because of the antacids generally prescribed with nsaids to protect your stomach. I took omeprazole for 6 years with no idea of the risk of developing kidney stones.
I was unlucky to have kidney stones recently and although it is possible I might have had a stone anyway it has been concluded that the most likely cause was longterm antacid use.
I live with chronic pain and thought I knew what 10/10 pain was but this was nothing compared to the utter agony of kidney stones.
I wish I had known the risk. If so I wouldn’t have taken nsaids or antacids at all and I never will again.

Thank you are you able to work ? I can Coe with upto around a 6 at home but I'm stil on sick at moment.

Apparently our NHS clinic has a year wait list and doesn't deal with medication it's more therapies. I could look at private but dh is worried about them having a financial incentive.. Do you have any recommendations?

I'm taking lansaprozole I was prescribed it in hospital. One consultant I've seen said take ibuprofen, so I did and it seemed to help. Another said it won't make much difference and not to bother. So I'm not sure what to do.

I'm on a12 hour slow release so I have to take it twice a day . On 300mg I'd got my pain fairly steady and my mobility was improving all the time. on 250mg I'm at between a 6 and a 8 so my mobility is much more limited.

I take tramadol and an nsaid called etodalac. It’s slow release so a bit nicer on your stomach. I also take something for my stomach to protect it. i have used morphine patches and they were great but i became allergic to the glue in it. This helped me go on a disney holiday with all that entails and have a brilliant time.

I was worried about addiction but my doctor assured me that if you are in pain you need it. It’s when people are using them to help mood etc. My GP was absolutely fab but he’s retired now. 🙃🫣

It's so hard I don't know what to do or feel like anyone is helping me. If a wrong decision is made that's me in more pain for at least two weeks before I can be seen again.

My world has become very small. It's a twenty minute walk each way for school run which I can't manage at moment so dh is having to do it. And work into the evening. I can manage to do a few jobs inthe house, sometimes I can walk or drive to the shop . On one good day i managed to go swiming. But since I started reducing a week a go I haven't been able to walk more than ten minutes.

I dont know if I'm better on higher meds so I can move/have more quality of life. The tapentadol has few side effects occasional headaches or grogginess but the longer I've been on it the less it has happened. Or less meds but more restricted.

The physio said he expected to see an improvement in a few months as did one of consultants I saw. But the consultant I saw yesterday said expect it to last 2-3 years .

It feels unbearable at the moment and I feel so guilty that my family is having to pick up the slack . I can't work at the minute as it's a 30 min drive away and I can't get there, plus I need to lay every couple hours. I'm probably going to lose my job. .

I got addicted to codeine, still am addicted and always will be. I like you have degenerated discs which causes sciatica, the pain is daily. Any doctor who says you can't get addicted to opiates shouldn't be a doctor, the way opiates work is that you have to take more over time to feel the same effects for pain relief. That's how I got into the situation I'm in now. That's why they're not recommended for long term pain relief, they stop working, you have to take more, your brain changes and is constantly looking for that reward.

Bupe is extremely addictive

Yes that's kind of how I feel. I don't really want to take them but my body needs them.

Wow I'm putting the nerve pain I felt when my back went into spasm and my whole body contracted so I literally fell over as a10 and basing all current pain off that. I'd hate to think there's anything worse. I've being taking lansasprozle for 2 months now. I will mention to doctor.

Did your dh go to a pain clinic via NHS or private? Our NHS one has a year wait list and apparently doesn't manage medication (although that's just what consultant said )

This is it, all I can currently do is bits of housework/physio and local walks. I can't even take my son to school . My life has got very small.

This is what I'm trying to understand so it's not addiction like me craving them? It's more in my brain? So that's why when I've dropped 50mg my pain has risen? What's the solution though? If I need the drugs to get through the pain . Would my body be able to cope without them?

@lilytuckerpritchet when your body is dependent on opiates it actually makes up pain to get that reward. I'm no expert but this is what I've been told by drug nurses etc and I've done alot of reading online, it's actually quite interesting what your body does to get that reward it wants ! I'm not saying your pain isn't there, sure it is, but the opiates will 100% have changed your brain/opiate receptors

@lilytuckerpritchet When you take opioids again and again over time, your body doesn't make as many endorphins. The same dose of opioids doesn't make you feel as good. This is called tolerance. One reason opioid use disorder is so common is that people who build up tolerance may feel like they must raise their doses to keep feeling good. They also may start having cravings for opioids. If they don't raise their doses, they may start having withdrawal symptoms, including worsening pain, goosebumps, anxiety, yawning and diarrhea.

That's off mayo clinic that kind of explains what I'm trying to say

I gave up my job after years of thinking I was either too doped up to work or in so much pain I could not concentrate BUT I now freelance from home and work every day but in short bursts.

Problem is work doesn't always fit in with the leg and back but the work pays for the physio etc. For me, a private physio is cheaper than the taxi to the NHS hospital physio.

On a good day I can potter like you do. I am hoping that once you can stabilise your back by taking the right amount of meds with the right physio and level of pottering you will get back to work. I managed to work for years once I had got over surgeries or falls etc and I still find work a great distraction.

Hopefully, even if it isn't the same job, there will be opportunities once things are a bit more stable.

Just to throw in another take, buprenorphine is a partial antagonist to opiates. So that means that at a higher dose it blocks the effects of opiates like codeine. Usually they won't be prescribed together.
Bup is very effective and easier to reduce off than other opiate meds. But yes, there will be withdrawals if you stop the patches. There probably won't be withdrawals if you come off the codeine as their effect may have been minimal.

I guess what I really want to know is am I better on higher lever opiates and manageable pain so able to move more meaning hopefully the disc issue will resolve. Or lower the opiates (gradually) but pain increases limiting movement more.

If I lower the opiate am I feeling more pain because I'm actually in pain or is it that my brain is trying to trick me into taking more meds? If it's the second one will that wear off over time?

I'm currently on long term sick leave (been 2 months) I think I get six months at full pay (I'm in local authority. )

But at some point it's going to become a problem for work. Luckily we can afford for me not to work but I love my job. But it's not flexible. It's set hours customer facing I can't work from home or leave early. And it's a 30 minute drive away.

Patches are something to consider

Does anyone have experience of tapering off the drugs ? How often and by how much and whether to substitute with a lower strength opiate?