Any advice on oxycontin change

[Scotspain]

been a pain patient for quite a few years after damaging my lower spine 20 yrs ago at work drs wouldn't treat me then and i ended up addicted to street drugs only after detoxing from them my dr realised i was self medicating for the pain which with no meds was a constant 6 to 7 with occasional 8/9 i was sent to pain clinic mris done etc they put me on oxycontin and pregabalin which has slowly crept up in dosage due to tolerance i am on 80mg 2 times a day with 80mg of oxynorm for breakthrough pain (4x20mg) and 400mg pregabalin only thing is my gp is great and understanding but others are ignorant and left me a week without meds when my gp was ill withdrawal was sbsolute hell and suicide was feeling like only option even after telling other gps this still ignored my pleas for help i am also on Diazepam 40mg day and other gp stopped those and gave me clonazepam 24mg a day after writing off a car and nearly losing my wife due to my behaviour i found out clonazepam dose was equivalent to 500mg Diazepam a day and came off them i could have sued for negligence but didnt want my gp who is a partner to suffer thru other gps mess up anyway i am waiting for pain clinic appointment to see about a med change as i always wake up in withdrawal anyone else suffer this ? I usually end up short on meds due to waking at 4am in wd taking a dose falling asleep and waking at 8 in pain and take morning dose feel i am at end of tether and want to half oxy dose and also use a fentanyl patch to stop waking in wd any other ideas? Thanks all

[Madlegs1]

Sounds like you are on very high meds especially opiates for that condition.

Have you looked at surgical or other interventions? I know that is a route many of us don't want to take- but you are at the end of the medication road , I would imagine ,especially if you have been through an addictive experience.

I can empathise with your situation in a small way.

I am on oxycontin at very low rate for OA in lower back and also Restless legs syndrome . I don't wish to take more opiates- been there with Fentanyl- 😢

So am going for epidural injection in 3wks. Scared to hell but feel it's the only way- and at least worth a try. I may well regret this but I have to try.

If that doesnt work , I'll have to look at fusions etc. But will cross that when it arises.

It is such a scary situation- not knowing what to do or where to turn. Is it worth having a good heart to heart with your 'good' GP- about your fears and choices. You should at least be referred to a good spine specialist or clinic who could discuss your options.

I wish you all the best. You are not alone and there will be some help out there. Eventually! 😎

[Scotspain in reply to Madlegs1]

Hi thanks for the reply i have been offered surgery which will either cure the sciatic problems or will cause loss of feeling and weakness down left side and odds were 50 50 which for me was a no go that or pain meds forevermore i have been on fent before but that was 75mcg this time dr is offering 200mcg hr but patches wear off at 48hr on me and i end up short on meds again with 20 patches a month 100mcg wearing 2 i was thinking i could stagger them to make them last cant get fent breakthrough meds as they are so damn expensive nhs wont give them so id be on oxynorm for breakthrough pain its a hard choice better the devil you know ? I did ask for subutex but dr wont give them for pain and i mentioned morphine he told me it was crap compared to oxy but i have tried the 200mg mst (keep some incase of wd now!) And they actually work but i cant tell him i have tried them incase he freaks and stops oxy

[Madlegs1 in reply to Scotspain]

Yeah - I had that 48 hr Fentanyl issue. It's to do with the half life. I resolved it by dividing the dose into three and applying each day. This gives a continuous even dosage and gets over the 48 hr effect.

Sorry about the rest of your story- the oxynorm is a nasty little B- because it's so effective but shortlived.

Hope someone else comes up with a better idea.

Cheers .

[Scotspain in reply to Madlegs1]

Thanks for your replies good to speak to understanding people friends and family just dont get how i can be in pain while in the meds they dont realise i would b immobile without the meds and treat it like a stubbed toe or something as they cant see a bruise or wound it cant be that bad , thanks for the fentanyl patch idea what did u do to start eg for example a 150mcg dose did u put 1 on mon 1 tues 1 wed and cycle taking mon one off and new on thurs and so on ?

[Madlegs1 in reply to Scotspain]

Exactly- at any one time you would have three patches on. combined total dose equal to one full three day dose.

I think you put it better😅!

Cheers.

[RAYJAYC]

Hi Scotspain

I totally & utterly understand your pain and how it destroys your life BUT.........

I really think you need to sit down, breathe and take a look at your medication; what exactly are you taking, when & why?

Have you been taught any pain management techniques that don't involve medication? There are different types used by different people but they are a vital tool in dealing with this! Some people can't or haven't mastered any yet but they do take patience & participation; it's tough but if we're to get any quality of life, we have to include some of them in our daily/weekly routine.

Some ideas; yoga, pilates, swimming (or just being in the water and moving the body) or acupuncture?

Do you see a physiotherapist? If not, ask your GP for a referral. They'll be able to tell you which stretches & exercises to do safely at home, in the pool or at classes.

Meditation or just basic deep breaths to relax you; I know it sounds a little corny but learning the skill of breathing through pain can help you manage situations sometimes; especially when you're out of your home at not able to sit/lay in your most comfortable position.

Regarding your medication, I think you need to know exactly what you're taking, when & why? Have you just had your regular medication increased without trying any other pain management techniques? There'll come a time when the dose can't be increased anymore; what will happen then? We're all facing that question so a lot of the guys on here use the other mentioned strategies in the hope that we'll not have to get to that stage!

Hopefully you'll get your pain clinic appointment soon so you can start to reorganise your whole situation; hopefully you'll get a good pain clinic too - use it as best you can. Ask lots of questions about meds & other therapies; really make the most of the appointment but don't expect miracles,it takes some effort on your part too.

I really hope you start to feel a little better soon; keep us updated......

RJC

[Scotspain in reply to RAYJAYC]

Hi ta for replies i am referred back for spinal physio atm waiting for appointments as always i have tried pilates to strengthen core muscles was hard going but worth the extra effort its remembering to keep up the exercise so easy to leave it a day and then forget to do them then have to start all over have a tens machine i use a lot during breakthrough pain i find it plus oxynorm (shortec) work seemingly all oxy patients are switch over to longtec and shortec due to confusion on scripts but its cost i think as they are identical even says napp on box but are 20pound cheaper than oxycontin name brand i notice no difference apart from packets !

[Steve49]

Hi.

Welcome to the gang.

Sorry about this, yes we are all in the same boat "or ship"

Yes I'm currently taking Pregabiline 600mg per day & a number off uther

meds.

I have tried OxyContin & Oxynorm a few times but I can't get on with them.

My last form off treatment is "Deep Brain Stimulation" but the NHS won't "Fund it"Even though six + NHS Consultants have told me.

Have you tried "Amitriptline" this is taken at night as it will knock you out.

Please let me now if I can help.

Steve.

[Preacherman]

Hi Scotspain,

For me, I have found that if I wait an extra hour or two or even more to take the next dose of pain medicine that they actually work better, than taking them earlier than prescribed, which we are not to do, especially with narcodic pain medicine.

Also for example, if you are to take like 4 pills a day, try taking 3 or 3-1/2, in doing so after a few months you would have some extra pills for those difficult days. I really try to take them always on a as needed basis. I think part of the problem is sometimes we just want to be "pain free", but in reality, I don't think that will ever happen, maybe less pain, but not pain free.

RAYJAYC had some good things to say, maybe consider some of the things said.

Blessings and may you have a nice day,

Brian

[deejames]

RayJay speaks a lot of sense Scots pain. That seems a huge amount of oxycodone you are taking never mind the rest. Pain management techniques do work as extra tools in combination with the drugs as do other physical therapies.

Dee

[stokebones]

I think the first thing the pain clinic will do, is start to reduce your medication. Oxycodone is 1.5 - 2 X more potent than morphine and the dose you are on, would scare most pain specialists.

Maybe they can offer injections? Other non opioid medications like duloxetine, lidocaine patches etc.

I'd just be prepared that the pain clinic might decide your dose is far too high, and rather than helping may make things worse.