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.

Yes I did this.

I was in an accident ten years ago. Was on tramadol.

Every time I dropped the amt I was taking my pain would go back up. It would take about six weeks to two months to settle down.

I used ibuprofen and paracetamol to help during those periods.

I mostly only did one reduction a year as it really did stop me walking as far and being as active.

I also took amytriptyline which helped with the nerve pain from my accident.

Thanks I've been on 300mg tapentadol for 2 months. I dropped 50mg and pain went from a 3 to a 8. It's been aweek and currently I'm around a 5 so hoping it's settling. Online it Recommends 10% drop every one to two weeks.

bump

Agree in referral to a pain clinic as you need a long term plan until any treatment can happen (referral can take a snmmmmmmmmmm. I’ve been on strong opioids for 14yrs due to a pancreas disease thanks to a rogue gallstone. Until I had whipple surgery I was on fentanyl. I am now on slow release oxy, twice a day and immediate release oxy 3 times a day. Plus pregablin. I have reduced the dose in the last year. Through choice.

Agree with ibuprofen. I got a lot of stomach ulcers from anti inflammatories.

I don’t think tapering is the right thing to do when you’re in so much pain. You’re in severe pain, you need pain relief. I’d move away from worrying about addiction. In the 14yrs i’ve been on opiods i’ve never abused them, and I know I can taper off as I did from the fentanyl after my major surgery. But I know I need some level of pain relief in order to lead my life. It is what it is. I’ve reduced recently, but can’t come off them as then my qualify of life would be far worse.

I don’t understand why they are trying to taper you off when you’re still clearly in an awful lot of pain. My advice is to keep pushing for treatment, and don’t worry too much about the pain meds. Respect them and never take them as they make you feel good (I never got a high from mine as I increased gradually). But equally don’t avoid taking them as you worry about being on pain killers. Not everyone who takes long term pain killers ends up addicted to them with their life in tatters.

Our NHS pain clinic has a year wait list and I'm not on it yet. The consultant said they don't really deal with meds side more the holistic approach.

I could look at private but dh is worried they will focus more on money than my health or it will be NHS doctors we see anyway .

Sorry that should say referral can take a while. Not sure what happened there, and too late to edit now.

@Zanatdy the consultant said if I stay on them they will stop being effective and then I'll need more and more until nothing works. I'm ok with this drop and my pain at a 6 (as long as it's not permanent and does improve) but I don't want to drop again and have my pain shoot up to an 8 or 9.

It's so hard I don't know what to do for best. I don't want to stay on them if ultimately they are going to create more pain and make things harder in the long run but equally I don't want to reduce them too soon and set my self back. Everything online says long term use isn't good but what's long term? Weeks? Months? Years?

My GP managed my pain relief mainly, I preferred that to the pain clinic. Is there anything they can do for you, surgery wise? Or is it a case of waiting? Surgery for me changed my quality of life massively, though it was a massive surgery and I had a lot of complications. But my pain is a lot better than pre surgery and I can eat normally now, or almost.

The docs you’d see privately would be the same as NHS. If there is no treatment then i’d pay it as your sick pay will run out before you get to the pain clinic

If I came off mine i’d have been in bed in agony. What kind of life is that? Docs have never suggested I come off pain meds as they know they mean I have a quality of life. I don’t worry about being on them as the alternative is no life and I am always very respectful of the meds, yes I’d dependant on them but i’m not addicted.

@Zanatdy it's two prolapsed dehydrated discs plus arthritis in my lower back.

The consultant said eventually it may mean surgery particularly if the disc comes out/shatters or if it leads to cauda equina.

Consultant said with the right treatment package it could be better in 2 to 3 years. But there is no treatment package. Consultant won't see me again unless something changes. I'm seeing NHS physio every few weeks who gives me exercises which I am doing religiously twice a day. Currently very small on bed movements. I'm pottering around house and going for two walks a day (between 10 and 20 minutes depending on pain) I need to lay down every 1-2 hours . And every time I see GP it's a different one and I've not found who seems to be knowledgeable about pain, meds or disc issues.

I have no clue how to go with this, I'm scared that staying on the opiates will make things harder in the long run but coming off them could set me back. I don't know what to do.
I don't know how long the acute stage should last and when the pain should start to ease. Or what's the pain and what's the opiates.

I've been off work two months I get 5 months full pay and 5 months half pay.

@Zanatdy sorry for off loading this on you thank you for your advice

It’s a tough decision for sure. For me being on meds has been the difference between living, and existing. They do have their downsides, but they also help an awful lot. I guess see how you go when you reduce. If after a few weeks your pain level hasn’t reduced then don’t reduce again. I reduced my oxy this year, but the pharmacist is helping with this, and it’s been slow. I wanted to reduce as I was worried it I get acute pancreatitis again or need another surgery then i’ll really struggle to manage the pain post surgery like when I had my whipple. Thankfully the reduction hasn’t caused more pain and i’m now on a much lower dose, but still high in the grand scheme of things.

@Zanatdy I think you are right. This reduction has been manageable (although unpleasant) I guess I have to find my limit.

Yes, you need to be able to function, especially when you have kids. I had no-one to help me so had to take the meds in order to do everything young kids need. Good luck, it’s horrible living in constant pain

I saw a pain consultant privately.

He was the same guy who ran the pain clinic at my local hospital.

He was very helpful and gave me a lot of useful advice about medication.

Pain clinics differ from place to place. I have not been to my local one.

I have been in a similar situation to you.

Regarding seeing a pain consultant privately I did this after a particularly unpleasant experience with one of his colleagues in the NHS pain clinic. He was very nice but adamant that he wouldn’t be prescribing strong opiates privately. There is a lot of misuse by wealthy addicts and so many doctors don’t want that type of private work.

i have been on a combination of cocodamol, tramadol, naproxen, pregablin and amitriptyline (plus omeprezole and stool softeners) for over ten years now. They still help immensely and I have never found that I have needed to increase the doses to get the same effect. I guess I’m ‘lucky’! When my back goes into spasm I take the odd diazepam but that really does lose its efficacy if taken more than occasionally.

All the best. Getting the right combination has been key for me and I am still restricted in what I can do but most people wouldn’t realise my condition. I’m extremely good at masking my pain but equally that’s silly if it is going to create worse pain later.

Its a juggling act.

Yes the pain clinic looks beyond pain relief, but this is because when we have chronic pain our brain gets involved. Pain wind up is a very real thing where the brain anticipates the pain and effectively creates it before it starts. In our area it is called the integrated pain and spinal service IPASS so it looks holistically at pain relief, physio and CBT to help manage the pain. Yes you may have a 1 year waiting list, but if you are not even on the list you are never going to get seen. The medication side is often run by specialist anaesthetists who are much, much more knowledgeable about the different types of pain relief their risks, side effects and benefits than any other type of doctor.

I'm going to ask to be referred at next gp appointment . It just feels a long time

Thank you. I was feeling pretty good on the 300mg tapentadol. Pain of around a 2/3 but still with limited mobility but building up mobility slowly . But I guess being on it 2 months there's no way of knowing if that would last. Reducing it by 50mg has put me around a 6 on pain level, I'm able to do physio stretch's , sit/walk for short periods. Do small house jobs. It's manageable but I wouldn't want it long term.

I'd be ok with trying something less strong like tramadol but just want to make sure I get it right.

The consultant seemed confident it will ease but I don't know if he means no longer acute or go completely .

I hope I can reach a point of no longer needing pain meds everyday.

@Zanatdy thank you for your advice. I've had back issues for 15 years plus but prior to this incident I could do something to relieve it - bath, move position etc. constant pain is so debilitating.

Long term opioids have significant health implications, including making you more sensitive to pain, which leads to needing higher doses and so it goes on.

This is a really useful place to start looking for info and also somewhere to point your GP towards, https://www.fpm.ac.uk/opioids-aware

Info on harms https://www.fpm.ac.uk/opioids-aware-clinical-use-opioids/long-term-harms-opioids

Thank you it's hard because my pain is still in the acute stage. I wouldn't cope without them at this point but it's workout what it should look like. Because if I can't move about I won't recover.

Professionals talk about short and long term. But what is long term.? Is two months long term?

How long should an acute attack last? On line seems to suggest a few weeks but two months on and I'm still in a lot of pain

It's often quite a personal decision on how best to balance pain, physical therapies, medication and the risks/ side effects, especially when you know the condition isn't likely to ever go away.

Sadly medication is the 'easy' option for prescribers to offer, with resources for other options very limited in the NHS. it's not uncommon for the dose to get adjusted upwards in response to unresolved pain (and almost never reduced when things are stable). I see patients who have been opioids for 10+ years with doses slowly edging up and who are now on huge doses and very reluctant to even try reducing. It's not only the worry of addiction as a PP mentioned but the links to cognitive decline, falls and other medical conditions which are concerning.

Is there a particular reason that they didn't want you on ibuprofen longer term? Any history of stomach ulcers/bleeds, age >65 or other meds that crease your bleeding risk?

All pain relief medication has side effects but ibuprofen is a useful drug to reduce the need for opioids and to help manage pain at times when you are reducing opioid doses.

I would be having a review at least every 3-6 months, with a view to trying to reduce the dose whenever if it feels like the pain is stable/ manageable.

You could ask your GP (or Google) about chronic pain clinics and/or CBT (availability varies depending on location) or self refer https://www.nhs.uk/nhs-services/mental-health-services/find-nhs-talking-therapies/what-happens-when-you-refer-yourself/

TENS machines, acupuncture, meditation and mindfulness are all options worth exploring.

Employer assistance programs sometimes offer access to CBT or counselling. This site,
https://livewellwithpain.co.uk/resources-for-people-with-pain/ may also be helpful