I'm new. Opiate prescribing

[Tashianji]

Hi I'm new to this I have multiple health issues, one of which is degenerative spine. I had a stimulator but they removed it when I had a spinal op due to a calcified cyst pressing on spinal nerves at L4/5. Recently sciatica back with a vengeance, have asked to go to a different pain clinic I don't want to see doctor at old one as my brilliant consultant has left the new one is not what I want or need. I'm on oxycodone and it seems all the docs want now is to get you off the tablets without anything to replace it. I believe The government has decided that opiate prescribing is too high so it must be stopped. I've managed to reduce the amount I take to keep them happy but my pain is not good I try to use non drug interventions including mindfulness, relaxation etc but without the backing of opiates at a reasonable therapeutic level non of this works for me. We are being punished by the government are they are following Americas lead get everybody off opiates in case they overdose and get sued?.

I am a carer and have to be able to look after my husband, there is nobody to help, good adult social care is non existent, basically I save the public purse a lot of money because I do their job. I don't get money because I have another source of income. So why try to refuse me one of the few things that help. It's ludicrous and shortsighted. Sorry to sound angry but that's because I am. We need to lobby MPs etc but most people are so unwell they have little energy left to undertake anything like this. We have been to see ours who was sympathetic but whether helpful in long run who knows. Has anybody else having problems with pain meds especially opiates?

Best wishes

[gindy]

Well my pain doc was pushing to get me off of oxycodone, tried telling me it's causing cancer with no medical evidence to back it up? But I'm quite formidable when it comes to my care, so they're leaving me alone for the moment.

I do however foresee more issues around this in the future as I believe you're right and the gov have issued a notice to all pain specialists to quit prescribing opiates.

My suggestion to you is to pay to see your desired pain specialist privately it'll only cost £100-£200 depending on location. That's exactly what I did.

[RibvanRey]

Hello Tashianji welcome to the Community. I am sorry to hear that you are unable to manage your pain levels on the medication that you are being prescribed. I ask as you don't say, how long has it been since your doses were reduced please? Changing down can take time.

I completely understand the multiple causes part. Is your current uncontrolled pain a constant and continuous problem for you, or is it that since reducing you are now experiencing periods of uncontrollable pain?

Have you been back to your GP and explained that you have done as asked and tried these medication reduction but that you simply cannot function on the doses that you are being given.

Whilst I will agree that the NHS are trying to substantially reduce their opiate prescribing, I completely refuse to agree that there is a plan to totally withdraw all opiate prescriptions.

Surely there will continue to be a place where opiates are the appropriate medication. I think that we will see a more regular changing of the actual opiate medicine rather than the old habit of increasing the dosage once the patient can no longer manage their pain. Besides which, this is a more effective pain control.

The increasing use of other purposed drugs such as anti-depressants and anti-convolsants etc, will continue to grow as anadotal evidence is researched. Also it is a very long time since a completely new pain releaving drug was developed. Opiate and Coca are really only Victorian drugs with greater refinement.

I hope that you are able to find a way of getting more comfortable soon. Have ever tried a Tens machine if it is breakthrough pain rather than constant pain.

Kind regards , Rib

[RAYJAYC]

The current/new NICE guidelines on opiate medication have changed so unfortunately some people have had their prescriptions reduced but it seems to be a bit patchy around the country as to which prescribers are actually following the guidelines!!

I've not had any issues yet (I've probably just jinxed it now!) and haven't had any conversations with the various medical professionals involved in my career about it either. If I were you though, I have to admit, I would probably have a bit of a meltdown and once I'd pulled myself together, I'd go and see whichever doctor is withholding the prescription and with assertiveness, request it be 're-prescribed! Having a quivering wreck, constantly in hospital, may change their mind.

I really, really feel for you and hope that you get it sorted.....

RJC x

[Bellavita in reply to RAYJAYC]

It's inhumane to cut all meds at once but unfortunately it happens. The ironic part is where the uncontrolled meds like amitripyline or cymbalta make you more drowsy and cause more health related issues from side effects. All we ask for is the ability to function throughout the day with positive results in the long run. Does a doctor want to see a chronic pain patient in bed all day or actually function with the ability to attend part time work or exercise for that matter. The pain will be there regardless with or without and will not be cured by pain meds but only make it tolerable. I'm more clearheaded when I take meds and function better. I just graduated with a masters degree thanks to my pain level staying in 4-5 out of 10 scale.

Good luck and stay positive. It's amazing how your mind and body are one working unit.

[RAYJAYC in reply to Bellavita]

You're absolutely right that it's inhumane (and dangerous) to take people off of everything at once but unfortunately, given the most recent research, doctors are almost giving a 'knee-jerk' response and doing so! The problem they face is patients who take the strong opiods who say they're still in pain so the 'sensible thing to do on those occasions is to adhere to the medical evidence and withdraw said opiods; this then spills over onto us patients who do benefit from the opiods and it gets very messy! I've now told my pain specialist which drugs have ceased working and which, despite trying to reduce, are most definitely still needed so I've, for want of a better description, been 'ticked off' as having had a review and am only taking the drugs I need.

Some people will inevitably be left to suffer as their relationship with their doctor or GP may not be so good or they don't have the knowledge, understanding or confidence to 'argue' their case but it's because of the failed treatment with opioids yet demand for them that this has happened.

You sound like you know what works for you and that you get definite benefits from them so explain this and prove your point with examples; any pain specialist worth their 'salt' should take notice and continue (hopefully) to prescribe what you need.

Good luck 😊

RJC x

[waylay in reply to RAYJAYC]

Many are still in pain with strong opioids, but they're in less pain! Even a 20% reduction in pain makes a difference, as many of us know! Many chronic pain patients will always have some pain. Sad, but true.

[RAYJAYC]

That should've said 'care' not career; that's long gone!!

[Preacherman]

Hi Tash,

I was going to leave you a long winded post, but thought it best to just maybe have you "Google Opiate Withdrawl", and see what some of these folks have to say about Hydrocodone, Vicodin and Oxycodone. Find out all you can about opiates and know what your getting into and then find out if you do get into it how to get out of it. I've been there and trust me it is not fun. In time that drug will turn around and bite you hard....real hard. I know this sorry to say but from personal experience myself. I got off oxycodone because after awhile it doesn't work so well. I have severe R/A, I now take Embrel, Methotrexate, Prednisone, Motrin 800 and am still in pain, I will take a pain pill once in a while as needed only but NOT everyday that is the danger. Blessings and may the love of God keep you!!!

Brian

[Tashianji]

Hi my go has increased my OxyContin a little until I see the new pain clinic, I want my stimulator to be put back they removed it to have the back op but I really need it. I'm going to have an MRI to find out what is going on had to ask my rheumatologist to organise it as gps aren't allowed. Unfortunately I think that if you want a result with the NHS you have to be prepared to make a fuss. I think that a lot of sick people may turn to illegal drugs as their options for pain relief are going to be reduced to drugs which don't work for everybody, cbt and naval gazing. Don't get me wrong I'm all for alternative therapies but they don't work across the board. I may be cynical but I've been in the system for over 20 years and I've seen the quality of service for people with long term conditions deteriorate over the past years. I also speak professionally I was a staff nurse in my former life and am surrounded by nurses within the family mostly still practicing. Unfortunately we are not financially able to go private living on our pensions so that's not an option just have to fight the system from within!

Thanks for your replies

Love Tashianji x

[waylay in reply to Tashianji]

Agreed! In the US, which is years ahead of us, and far more draconian, the number of pain patients who take their own lives (I hate "commit suicide - sounds like a crime) has risen noticeably. There's also a rise in the numbers of CPPs who are overdosing on street drugs. They have their opioids taken away, can't stand the pain, go to the street to get relief, and end up with fake pain pills (which often contain illicit fentanyl or an analog) or heroin with a big hit of fentanyl in it. It's horrendous. Illicit fentanyl killing users of illegal opioids, whether addicts or patients, is a serious problem in the US at the moment. It's largely responsible for the almost exponential increase in deaths by opioid overdose in the past few years. :/

[Bellavita]

Amen, nicely said.