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Opioid medications becoming limited in the UK?

Waylay
Waylay Member Posts: 971 Pioneering
I don't want to panic people, but I read something about this in another post, so I went and did some googling. I could be wrong, but I found a lot of recent documents/sites about limiting/reducing opioid use by chronic pain patients. I'm writing about it here because if this IS happening, we all need to be aware of it and be ready to talk to people (particularly doctors) about it.

One document (an Oxford University Hospitals document entitled, "Guidance for opioid reduction in primary care" (dated 12/2017)) seemed to summarise what a lot of the others were saying:

Opioids Aware five headline points
----------------------------------------------
1. Opioids are very good analgesics for acute pain and for pain at the end of life but there is little evidence that they are helpful for long term pain.
Some patients (hi *waves*) have lived experience that they're good for long-term pain. Are we not evidence? Other sources estimate that about 20% of chronic pain patients find opioids helpful. That's a lot of people!

2. A small proportion of people may obtain good pain relief with opioids in the long term if the dose can be kept low and especially if their use is intermittent (however it is difficult to identify these people at the point of opioid initiation).
I wouldn't know about doses, but I assume that if people have really severe pain, higher doses might be required? Just an assumption - I'm not medically-qualified or a chemist. Comments, anyone?

It seems to make sense that intermittent use is probably more likely to stay effective (I occasionally stop my tramadol for days), but again, that's just my opinion. The fact that it's difficult to identify the people who do benefit at the point of initiation of opioid treatment is an issue, but that doesn't mean that they shouldn't have the choice to use them. What if they need them and nothing else helps enough

3. The risk of harm increases substantially at doses above an oral morphine equivalent of 120mg/day, but there is no increased benefit.
Safety at lower doses makes sense, but I'd like to see the studies that say that increased doses don't result in an increased benefit.

4. If a patient is using opioids but is still in pain, the opioids are not effective and should be discontinued, even if no other treatment is available.
UH?!?!?! What?! This goes against everything I've read and been taught about chronic pain . The "magical treatment/med that completely stops the pain" is one of those myths that pain clinicians spend a lot of time fighting. It may exist for some people (although it's very very rare), but for most of us, we need to accept that the magical cure doesn't actually exist (yet) before we can begin to move forward WITH our pain.

However, the lack of a magical, complete cure doesn't mean that a partially effective treatment isn't useful! Why would we continue to use TENS, injections, stretching, pacing, and meds with nasty side-effects if that were the case? In my experience, nothing completely gets rid of my pain (if it does for some of you, congrats!), but a lot of things help. When I have 8/10 pain I'm bed-bound, have trouble standing without help, my body gets twisted into odd shapes by muscle spasms, and I'm in absolute agony. If I take the appropriate doses of opioids and benzos, my pain generally goes down to ~4/10, which is a pain level I can handle. At that point I can stretch, and perhaps do other things that reduce the pain further. I can pay attention to a TV program, or go to sleep. I can get to the loo by myself, or grab something to eat. I'm much more able at 4/10 than I am at 8/10. No, I'm not pain-free - I haven't been for a decade - but my pain (and other symptoms) are far easier to handle on opioids+benzos. They WORK.

5. Chronic pain is very complex and if patients have refractory and disabling symptoms, particularly if they are on high opioid doses, a very detailed assessment of the many emotional influences on their pain experience is essential.
I imagine that almost all chronic pain patients have experienced the "It's all in your head" thing (from both medical and non-medical people). We're often judged to be nuts/malingering/making it up. The pain we feel is real, and often it's due to dysfunction in the peripheral and/or central nervous system(s). However, emotions do have a large effect on how much pain we feel. The brain releases certain chemicals to create pain in the body. It releases similar chemicals to signal emotions. Some of those chemicals are the same, and some affect each other. Happiness *chemically* reduces the amount of pain we feel, while sadness chemically increases it. Mental health problems such as depression and anxiety cause more pain, while love and touching a loved-one really do reduce pain. This isn't us being *crazy*; it's how the nervous system works.

As a result, if we're really down on ourselves, our lives, the people around us, etc., our pain will feel worse. If that's the case, we might benefit from some psychological treatment, some support to change our life circumstances (or an actual functioning benefits system which doesn't torture us and leave us in destitution!). If we're too scared to do anything physical because we think that we'll make things worse, and if that isn't true, then we could benefit from education and support to understand that, and to become more active (in the particular case of ME and the Pace study, ignore this completely!).

We might also benefit from some support to adjust to our new lives, if we've become disabled. I went from extremely fit, high-paid, in a career I loved, with lots of savings, and a partner I had a future with, to unable to get up off the floor, destitute and bankrupt, no career, no job, and dumped by my partner in 3 months. That was damned difficult to deal with! My mental health went haywire for years. I would really have liked some expert help to deal with the whole situation (I could still use some help, to be honest!).

Obviously, all the above are individual for each patient.

However, intimating that refractory and disabling symptoms while taking high opioid doses means that somehow these patients' chronic pain is more psychological in character is .... *$&#(# I've run out of words.



Tired. Hope this made sense.



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Comments

  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    @Waylay you might find the following article interesting:  

    https://www.theguardian.com/society/2018/jan/24/prescription-drug-addiction-government-launches-investigation

    I think the problem is that GPs/Consultants are basically putting people on various drugs e.g. anti depressants, opioids etc, which are not only addictive but which are also either ineffective long term and/or which cause further problems, i.e. other medical problems, with long term use.

    I see a LOT of people through my work who are on multiple prescriptions who still feel totally and utterly ****, there's something wrong with this for me!  Something isn't working. 

    Whether the NHS has the time, money, and/or inclination to really change things I don't know but they are starting to look into it which is a good thing.  Prescribing the drugs costs the NHS a lot of money so it's possible they could redirect that money to solutions that actually improve people's quality of life rather than just give them medications which don't work and effectively writes them off [for life]...

    I experience pain but I wouldn't touch opioids with a barge pole.

  • Freemum64
    Freemum64 Member Posts: 6 Listener
    @Waylay Current pain levels dictate I have zero concentration (I am sure you can relate!!) but very much look forward to reading your post as I too have been hearing whispers!! Xx
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    I have Fibromyalgia/chronic pain that is unresponsive to any pain medication/opioids. My Mom however survives on a cocktail of pain killers will have to mention this to her.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Which ones are opiods please?
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    edited November 2018
    Thanks @EmmaB I've just had a look and my meds are on there. I don't know if gabapentin is an opiod or not? I'm also on an anti depressant. I don't know how I would cope without my meds. So what's next? 
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    @debbiedo49 i’m on Pregabalin which is the same sort as Gabapentin, it’s an anti-seizure medication so hopefully that won’t be covered ??
  • EmmaB
    EmmaB Member Posts: 263 Pioneering
    Gabapentin isn't an opioid but it is a problem drug along with pregabalin - the prescribing of both drugs has gone through the roof in recent years and both are problematic and have 'street value' such are their effects.  

    Nothing is going to change with this in a hurry but the bottom line is that many of the drugs being looked into are ineffective or damaging when used long-term.  

    Psychologically it can feel like they may be helping [at least initially] but then ineffectiveness and addiction kicks in, also the effects of coming off medication can be misinterpreted as 'relapse' when in fact it is just the effects of coming off the medication.  

    The bottom line is that there may be better alternatives including non medication routes.

    This investigation is a good thing as it should mean people will get more effective treatment rather than just being dumped on drugs that don't work...

    @DavidJohn1984 your anti seizure medication should be fine because the thing is that they know how such medications work i.e. they have a clear effect, same as meds for diabetes, heart conditions etc.  

    The problem is that they really don't have a clue how medicines used to 'treat' mental distress and pain work, they've been winging it and its not working so something has to change!  


  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    @EmmaB don’t start to worry me now ?. I have one of two options for my Fibromyalgia and Pregabalin has the least side effects. I’ve tried every pain killer/opioid/analgesic drug there is and they all ended in disaster ?. I would like to try CBD oil but I can’t stomach the taste. I didn’t realise Pregabalin was a problem, my initial side effects actually nearly prevented me from continuing on them. I got horrendous audible hallucinations from them ?.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    @EmmaB gabapentin is being used to treat my fibro. Even when I tried to reduce the dosage the withdrawal pains were horrendous. I hate being on it but what's the alternative? Just suffer? 
  • Dezzi
    Dezzi Member Posts: 4 Listener
    I'm new so hope it's ok to jump into this thread. I wanted to tell David John 1984 that I take cbd oil, but in capsule form. Just in case that would work for David. I take it as well as my prescribed medications which include pregablin, and find it helpful. Thanks, hope I did this right ?
  • [Deleted User]
    [Deleted User] Posts: 58 Connected
    The user and all related content has been deleted.
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    @debbiedo49 what dosage are you on, i’m only at 200mg a day, nearly been on them a month. I have noticed “some minor changes” like I can shower now without passing out. However my alladonia has gone from feeling like I’ve been hailed upon to a scolding feeling now. @Dezzi i’ve Just found capsule ones but I have to wait for some money as all mine was stopped, how do you find them? @danb I tried every different painkiller for my fibromyalgia pain but none worked they just aggregated my CVS. I do take Diazepam to sedate me though when I do have a cycle and I take 30mg of Amatryptaline to sleep at night.
  • Freemum64
    Freemum64 Member Posts: 6 Listener
    @DavidJohn1984 Pregabalin gave me horrible hallucinations plus a ‘locked-in syndrome’ feeling of complete helplessness. CBD oil can be added to melted chocolate - once it hardens, you genuinely wouldn’t know. I myself take Shortec 120mg daily and Tramadol 50mg as spares. I have a pain management appointment with a consultant on 29th. I was in such agony a few weeks ago and hadn’t slept for two nights, my 20 year old daughter googled ‘fibromyalgia medication’ and something called Savella came back as a medication that was created some years ago, SOLELY for the treatment of fibro. Currently licensed only in N.Ireland and can only be prescribed over here by pain mgt clinics, so we shall see!! Xx
  • Freemum64
    Freemum64 Member Posts: 6 Listener
    Ps Sorry, Shortec is Oxycodone. Amytriptiline made me gain 30lb so I now use Phenergan which is an OTC sleep aid. Xx
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    @Freemum64 I didn’t know Amatryptaline caused weight gain? I read Pregabalin does the same. I have a medical condition that causes drastic weightloss, so so far I have gained no weight from any medications. I’ve been on Amatryptaline about 2-3 months now and i’m On 20-30 mg a night.
  • Freemum64
    Freemum64 Member Posts: 6 Listener
    Have to say, @DavidJohn1984, I’ve only ever known women to take Amy, each and every one of us gained weight. Xx
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    @Freemum64 yeh my Mom takes it and she gained a lot of weight. I guess it must be down to my CVS that i’m an exception. I wouldn’t mind some weight gain to be honest with you. I went from 13 stone 11 in January to 17 stone 8 in March, to now being 11 stone 13. I’ve lost over 5.7 stone. 
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    @debbiedo49 what dosage are you on, i’m only at 200mg a day, nearly been on them a month. I have noticed “some minor changes” like I can shower now without passing out. However my alladonia has gone from feeling like I’ve been hailed upon to a scolding feeling now. @Dezzi i’ve Just found capsule ones but I have to wait for some money as all mine was stopped, how do you find them? @danb I tried every different painkiller for my fibromyalgia pain but none worked they just aggregated my CVS. I do take Diazepam to sedate me though when I do have a cycle and I take 30mg of Amatryptaline to sleep at night.
    3 tabs 3 x daily
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    Freemum64 said:
    @DavidJohn1984 Pregabalin gave me horrible hallucinations plus a ‘locked-in syndrome’ feeling of complete helplessness. CBD oil can be added to melted chocolate - once it hardens, you genuinely wouldn’t know. I myself take Shortec 120mg daily and Tramadol 50mg as spares. I have a pain management appointment with a consultant on 29th. I was in such agony a few weeks ago and hadn’t slept for two nights, my 20 year old daughter googled ‘fibromyalgia medication’ and something called Savella came back as a medication that was created some years ago, SOLELY for the treatment of fibro. Currently licensed only in N.Ireland and can only be prescribed over here by pain mgt clinics, so we shall see!! Xx
    My friend vapes cbd oil
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    @debbiedo49 I haven’t had visual hallucinations yet, I just have audible ones. It sounds like i’m stood in a busy chopping centre and everybody is talking at once but I can’t hear what they’re saying. I read they usually taper off after a few weeks. I’m being upped every two weeks atm. I want to ask the Dr about CBC oil. I want to give it a try again. Not to sure about the vaping side though. I’ve never heard of say Ella, I shall google it. I’m not in a pain clinic yet. I Tramadol I tried a few weeks ago, had a bad day and took 2 and ended up being blue lighted to hospital. That ended the pain killer route. I did try oromorph which helped but the hospital said it’s not suitable because you build up a tolerance.

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