Do I have any rights/control over 'Opiates' b... - Pain Concern

Pain Concern

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Do I have any rights/control over 'Opiates' being reduced please?

tree-pagan
tree-pagan

Hello, I live in Scotland and am having a terrible time of it with my GP/Pain Consultant with regard to them enforcing me to reduce the only medication that eases my pain - Oxycontin.

My Pain Consultant even had the cheek to ask me "Do you WANT to be on opiates for the rest of your life?" This saddened and angered me as I have awful chronic back pain with permanent nerve damage at L5-S1 and as anyone who suffers this type of pain will know what I mean when I say it is life changing.

I was currently taking 90mg twice daily of modified release and 10mg of oxynorm immediate release 5x daily.

They have told me it is a danger to my life (I have been taking them for 10 years and they have helped me maintain a quality of daily living)

They have me on a fortnightly reduction of 10mg and to date I am down to 60mg 3x daily of oxycontin modified release - it is just awful and I would really like to know if I can refuse this reduction.

I would really appreciate any help.

Thank you for reading, I know we are all suffering in many awful ways.

28 Replies
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Hidden
Hidden

I sympathise with you. I’m in a similar position and nearing the end of a long opiate tapering, which on many levels is very, very hard.

It’s a hard sell when your Doctor tells you that the pain relief you are relying on doesn’t actually help your pain.(they prescribed it after all, you didn’t buy it off the shelf). How do they really know?

The issue is that the pharmaceutical companies sold OxyContin as non addictive when it is highly addictive. And thousands of Americans and Scots are dying from overdose of opiates.

How does that affect you and I? You are probably so used to opiates, while it definitely does give you some pain relief, you are also physically and mentally addicted to it. And the Doctors have been issued guidelines that unless you are end of life, you shouldn’t really be getting them.

All this doesn’t really help you. My advice based on my own personal experience would be to talk it over with your GP and try and agree a minimum dose to get to and see how your pain levels are then. If you aren’t happy change GP and ask for a second opinion.

The thing that gets me is, you did nothing to get yourself in the position you’re in now, your GP and thousands others did and almost overnight, the medical profession reversed their prescribing of pain medicine. (Ask your GP for a painkiller that is specifically designed to target nerve pain. Answer: there isn’t one). Good luck.

Smollyholly
Smollyholly in reply to Hidden

Hi I took Gabapentin 900mgs for 2-3 years for neuropathic pain and slept for most of that time as it made me so tired. That worked well but I decided to reduce it as one of the side affects is osteoporosis It was difficult to reduce and I eventually managed by reducing it by 100mgs at a time while changing to neurotriptylin and I now take 75mgs per night which gets rid of the pain and Im not so tired but it has the same side affects.

Hi there GM just read your post. I'm in scotland also was on longtec for 6 years. I had a disectomy on L5 in 1999. I truly understand your pain as I've had on going issues for years sciatica etc nerve damage. I decided to come off morphine due to the brain fog !!! It was a hard time but I managed to get through it and I am morphine free now. The thing is it's a big thing now about being on opioids the medical profession are currently trying to get people off these drugs but I wouldnt have thought they could force you as my gp said it was my choice not his. Sounds like you will need to stand up to pain management and remind them they have a duty of care !! I'm back on co codomol and have been on gabapentin for years although my pain level rising again I'm trying to work my way through it. I sincerely hope you get this sorted out you look after yourself

Hello, I'm so sorry you've had such a terrible time - I can really understand your position.

The two GP's in my practice followed the guidance given to them by pain clinic and Spinal Injuries Unit without question and used to be great in addressing my pain. Now, they have both left and I am left with young doctors who seem very reluctant to prescribe opiates - I think it's because of all the problems in America and there is guidance from the NHS about how to prescribe opiares now, that is a lot different to how I was treated before.

My only advice would be to try and get referred to your nearest Spinal Unit or else take an advocate in with you to your appointments In future. Also, if you can try and change your GP, but do some research in advance to see what patients think about the GP.

Other than those practical steps, I would try and write down how much pain is impacting on your mental health and if you feel brave enough - at your next appointment share this with your doctor.

Good luck.

tree-pagan
tree-pagan in reply to MSTKing

Hi MSTKing,

Thanks for being understanding, it means a great deal! Very much same situation here apart from my GP has known me for 11+ years and I very much respected her because of her level of thoroughness and care. She has forgetfully offered me the same 2 prescriptions in a matter of a few weeks and rushes me off the telephone - even if I've been crying!

Is this 'law' in Scotland?

Or do us patients have the right to receive medication that actually eases our pain?

MSTKing
MSTKing in reply to tree-pagan

If she has been good in the past, I would try and write to her, send it to the practice but addressed to your doctor.

The other thing is pain does really impact on mental health - would it be worth asking to be referred to your local community menental health team - they might be able to help re: meds

Take care

Can you call a lawyer. I believe you’re being dismissed.

GM yes totally agree with everything!!! My disc burst and was hitting my spinal cord so have been left with cauda equine syndrome so my bowels dont work dont get the message from my brain so on meds for life. Spinal injuries couldnt believe it didnt affect my bladder missed it my millimeters so I'm fortunate in a sense . This is the way forward with the medical profession they want everyone off opioids!!! It was very very hard but I'm actually glad I'm off then now. Pain is just so horrible to live with and I appreciate there is people on this site that TOTALLY UNDERSTAND.

tree-pagan
tree-pagan in reply to Betsy50

Thanks for your kind reply Betsy50🌻It's comforting to know we have this community to vent our thoughts/emotions without prejudice.

Oxycontin works for me - thus allowed me to manage my daily living, and currently I feel I'm in reverse with pain control, mobility, support and understanding with level of care that I'm receiving.

My eldest Son and I are discovering information with regard to people's choices taking medication that helps that individual - as this is what's so wrong! I was offered rehab last year by my poor excuse of a pain consultant. Flabbergasted doesn't touch how this made me feel as a respectable 48 year old.

That's when I began to realise just how unjustified this scenario has become.

They can't get away with this surely?

Betsy50
Betsy50 in reply to tree-pagan

Hi you see the medical profession have a nasty habit of treating us as though all our pain level is the same !!! This is so so wrong okay so I could be standing in a pub drinking with you and one drink might hit me harder than you or vice versa they treat us like sheep trying to herd us all along !!! Totally u understand what you are saying. I have altered sensations on my left foot bit like a jigsaw puzzle bits missing like feelings. I use a walking stick mobility not good cant walk muck more than 15 mins so I have to drive need my car like my baby lol. I hope speaking to me helps you I know its helping me just to have that one person who totally gets it.

Betsy50
Betsy50 in reply to tree-pagan

Hi again you have to stand up for yourself always better having some6like your son to be at every visit to consultation with you be cause it also affects family members. I have purchased cbs oil yesterday 40% dose so I will keep you posted on how it goes. Not sure if I'm allowed to say where I purchased it but it's all legal. I hope your okay feel free to get in touch anytime

Dolores2
Dolores2 in reply to tree-pagan

Hi, tree-pagan. You are shocked at the thought of you, a "respectable 48-year old", being offered rehab for prescription drug dependency. What about me, at 73 finding myself in a rehab unit?!! It was my decision to go there and I don't regret it - in fact, I find it quite amusing to drop into conversations with friends: "when I was in rehab"... Don't stand on your dignity; you find people from all walks of life in these places. Good luck with everything.

tree-pagan
tree-pagan in reply to Dolores2

I share your sense of humour😆

Yes it is positive to hear you say you understand because you also sadly suffer.

My Son and I are calling my GP tomorrow with a lot of legal questions.

I'm very nervous!

Hey there

I have also been asked to dose down, and felt a little helpless and quite confused after the appointment.

Thing is though, they can harm your liver.

Any way I just don’t know how i can live appropriately either, have always worked with my pain ( 18 years) as I could control it, now I am a little afraid.

You are not alone at least.🤗

Yea, I'm from Scotland too and after 40 years of opioid taking for my spine that has always given me severe spinal pain. I gradually came up thru' the 'ladder system' where it's a mild opioid to start, to a greater one, to another stronger and on and on. I'm now taking Morphine which they can increase to a stronger dose and so forth. Oxycodone and oxycontin are seriously

heavily abused drugs in the USA. Doctors in the USA are not issuing scripts for this tablet because of frighteners from the Federal Government they'll be struck off. Doctors over here are reacting to that way of thinking too, the addiction side I mean. That's my learned honest opinion. I'd ask your doctor for something else to take just as strong. Gook Luck.

tree-pagan
tree-pagan in reply to Stobban

Poor shame Stobban That's a very long time!

Yea, I've had this conversation with my GP regarding the fact that because opiates have been recreationally abused, us genuine chronic pain patients are being denied this life-line as such.

It took 3 days in hospital after my 2nd back surgery to regulate my pain meds and to be honest I've tried so many different alternatives to no avail. This is why I just cannot accept why us patients are not treated as individuals rather than as a nation.

This is negligence towards our human rights!

Years ago I would never speak up about anything, but now I've really surprised myself as to how this has made me react. It's terrifying knowing that the pain is only going to get worse.

Thank you for taking the time to reply. Take good care.

Have you tried Gabapentin?

Lila

Hi Greekqueen,

I currently take 300mg x12 daily. Thanks

Hi there. Having been physically dependent on prescription opiates myself, I don't think you should view your doctor's suggestion as a cheek, more as an attempt to get you off a very harmful substance. I rue the day I was put on morphine as I am sure that that was what triggered all the problems I now have - pain in coccyx, tremulousness, hot sweats, etc. even though I detoxed over 2 years ago. Have you thought of taking medicinal cannabis to help your pain? I wish you all the best.

tree-pagan
tree-pagan in reply to Dolores2

Hi Dolores, I so appreciate your help and support, and that's not been a great outcome for you, especially when you probably felt you were overcoming such a huge challenge to benefit you☹️

You've still achieved a very positive leap - please know this.

I wish greatly that I didn't need to rely on anything as such, but this really works for me and I'm frightened about how my life is already impacting.

My pain consultant was lovely to begin with until I explained just how much these helped with my pain, and within another 2 short appointments with her she was offering me rehab and ignoring me because I wasn't agreeing.

Anyhoo, it's a beautiful colourful Autumn day out there and as usual nature offers the best therapy🍁🍂🌞🙋🏻‍♀️ take care

Hi there i was on oxycontin and oxynorm for 10 yrs but they stopped working for me after 5yrs but by then i needed them to maintain some sort or a normal (whatever that is ) life.

The problem was the opiates started to shut down other functions, i stopped testosterone production , they caused osteoperosis, i could not metabolise vitimins causing no end of problems...basically they were killing me.

It took me 2 months to get off of them with very little help from the nhs, i also then came off of a 18yr gabapentoid prescription which was far harder to do than the opiates but now im off all the medication my life has improved 100%.

The pain is managable with excersise, yoga, and other diversion methods but anything is better than the way the drugs controlled my life.

I dont think that they can force you off the medication without offering an alternative (new pain medication is available) but believe me life( if you can come off the drugs) is far better. Look into all alternatives, i found "hyperbaric oxygen therapy" works wonders but its your life and only you can decide in which way to live it.

Good luck , im afraid life now for us will never be pain free but a better quality of life is out there.

Tony

Yea, Tree-Pagan I'm on your side regarding the medics messing with medication that brings positive pain relief. I can't say I've known anyone press their displeasure in having their opioid medication cut and succeed, but I do know some who have tried several other opioids to settle on one. But I believe you have tried this too. The other choice you have is what all others say.......''Change your Doctor''. All the best.

Hi , I have been on all sorts of pain relief, Pregabalin,Gabapentin, Butranse, Tramadol etc etc etc. I have been on Zomorph, and Oramorph + other pills/potions prescribed to me for well over 10 years, I felt that they were not working as well as they used to and explained that to my Dr, so after trying other options and cutting down on the Oramorph and Zomorph the Pain became worse than it had ever been! Now it was at my suggestion that I cut down on the Opioid treatments but that didn't matter to the Dr ! He would Not put me back to what I had been on Previously, So I called the Consultant and his Secretary got him to call me back, I explained everything 100% truthfully! He arranged a new prescription from the Hospital spoke to my rather reluctant Dr and my prescribes put at the level that the Consultant "Advised" ! If you feel you can talk to your consultant (not the pain management consultant) The Consultant who diagnosed the problem and probably the same one who did the Surgery (if you have had surgical treatment prior to pain management) then you explain the situation and the Consultant should back you up!!

There is a big push to get people off long-term opiates. Partly because of 'research' that suggests they don't actually work long-term and also because of some sudden deaths among people who were using them as prescribed. I have been on dihydrocodeine for more than 10 years and, early this year, was told that I have to stop. I did well at getting down from 300mg daily to 120mg (2 x 60mg slow release) but then rushed the process and have been rather unwell for the past week. I spoke to my GP yesterday who encouraged me to stick with it as he thought I was over the worst. However, last night I was so desperate for sleep (withdrawal has caused insomnia and restless legs, hadn't slept for more than 20 mins at a time for 5 days) that I gave in and took 1/4 of a 30mg fast acting tablet. That took the edge off and I slept for a few hours. The thing is that the pain hasn't been nearly as bad as I feared (I thought 'If it's this bad with the meds, how will I ever manage without them?!') so there might be a bit of truth in the research! I just wish I have access to more help in coming off them, I was really just told to go away and get on with it.

Are you able to get cbd or medical marijuana? Check studies. Wish you well and healing.

Dolores2
Dolores2 in reply to 6092177588

I have been taking medical cannabis since early September this year. I don't know if I am allowed to mention the name of the clinic, but you can do a google search in London - the name begins with S...I'm not sure how much it is helping my multiple pains, but I am certainly sleeping better.

Thank you all for sharing your stories xx

I had no help from CBD but haven't tried prescribed cannabis. TBH, I'm afraid of becoming dependant on something else and having to go through another detox . . .

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