my consultant has told me that after 25yrs of using prescribed opioids they will not be working for me and are in fact making my pain worse, my comment "you put me on them" so he would like me to reduce them by about half, I don't seem to have any dependent signs but I bet they're there just waiting to pounce. The last time I tried I reduced by 10mg but could feel the difference in the pain so didn't pursue it but I have nowhere to go for my breakthrough pain, I take other drugs to but I have stopped the Ketamine, didn't do much anyway, any help would be much appreciated.
Hi Julie
I was prescribed 800mgs per day of Oxycontin by my Dr but towards the end I was on closer to 1500mgs per day!
I reduced by tapering but once I got to 320mgs per day I hit a brick wall & couldn't drop any further as i was suffering from all kinds of horrible withdrawals. I was put on 115 mils of methadone per day to help which it did. I've now not touched any Oxycontin at all since August 2016 & I'm reducing the methadone, now down to 35mils per day.
I don't take anything for the pain though so I'm suffering now & my new GP is struggling to give me anything due to the Oxycontin I was on. I took the Oxy for around 8years.
If you struggle your Dr needs to help you reduce it by offering some advice surely. It's not fair that they leave you to struggle all by yourself!!
Sorry I can't help anymore
Please let us know how you get on.
Take care
Ritchie xx
Thank you so much for your reply, I had a long discussion with my GP today and unlike the consultant she was fantastic she wants do do it very slowly just drop 10mg in the morning keep the evening dose the same and after about 1 month drop 10mg in the evening and as she said there's no rush been taking it for a long time so what's a little while longer, thanks again for your reply.
me again, I wanted to ask how do you cope with the pain now? That's what frightens me the most, and apart from the massive dose was the OxyContin having any adverse affects on you?
take care Julie
Hi
That's great regarding the GP talk! And she is right, there is no rush & it's the best way to do it very slowly.
Regarding dealing with the pain now. I just really struggle to be honest. Don't sleep much hence writing at this time, It is a real struggle.
The Oxycontin was effecting me big time. It effected my mood, I had completely lost my sex drive & the amount I was taking I'm lucky I'm still here. I became very dependent on it & its all i thought about 24/7. It was horrible. I read all the horror stories also & you tube videos about how many thousands of people in the USA had died through overdose which is why I decided I wanted to come off it. I think Drs etc are much more aware of opiates now & how they work on your body than they were even just a couple of years ago & are becoming much stricter prescribing them.
Good luck
Ritchie xx
Hello, ive now had 7 days where I've reduced 10mg on my am dose I can feel a slight increase in pain but nothing I can't handle and GP says that it will even out apart from that it's all good so next week I'll remove the same from the PM dose, I hope it's as smooth.
Julie
Well done Julie.
You're doing really well & remember, there is no rush. The slower the better, it's the only way to do it.
I think I did mine too quickly looking back & I've even been told off about reducing my methadone too quickly!
The for reduction I did was 50mils of methadone but that because i forgot to take it 2 days in a row & thought well, if I can forget to take it for 2 days by 50mils then I'll be fine.
I've now dropped another 5mils starting today so I'll see how that goes.
Keep it up Julie, you're doing great!!
Ritchie xx
Hi Julie,
I was in the same situation as you, and still am really. I was prescribed 360mg per day but at times I was taking more like 500mg. I have tried so hard to temper them but kept failing. For 2 months now I have been taking 150mg per day. but like Ritchie I have hit a brick wall at 150mg! I keep taking seizures though and passing out and have had a lot of hormone problems which I am sure are related to the Oxy, however my GP doesn't seem to agree. I think I did taper too quickly though as it was stressing me out the amount I was taking and just wanted to stop it all at once. Not a good idea. But it did get me down to 150mg quickly. I still have withdrawn symptoms especially in the mornings. I sweat like nothing else and get very weak and shake. I have no idea if its due to the fact I have gone all night without it or if its something else. I also have no motivation and am tired all the time. I can handle all the physical withdrawal and pain from no longer taking as much, however the mental withdrawal is torture and I wish I could get something to help with that.
Good luck and keep up the good work.
Thank you for taking the time to reply to me, it means so much to have your support. This is typical me I want it to happen now, I've always been the same, but I will stick to the plan. Hey you are doing fantastically too as you've just said to me the slower the better so keep it up.
once again thanks for the support Ritchie.
Julie x
It's my pleasure Julie.
I know how hard it is when you're going through something like this. It was a massive thing for me & it helped me realise that after doing & going through everything I went through, I can now do anything.
I was addicted to the stuff & it was the first thing I thought about when I opened my eyes & the last thing before I closed them at night! Horrible situation!!
I remember getting really anxious when I'd run out & go into this stupid blind panic worrying about being late to get my monthly prescription, what if the Dr was Ill & the other dr wouldnt do my prescription due to the amount it was for, what if the pharmacy didnt have any in & i couldnt get any for hours, what if it snowed heavy overnight & the pharmacist couldnt get due to bad weather, what would i do!!! Talk about being paranoid! It really was the worst time of my life & its the hardest & best thing I've ever done! But I was addicted for years & on 1500mgs per day at the end so i was always going to struggle!
I always said once I got off all that Oxycontin I would always support others as i found there was very little support out there & even though I didn't believe him at the time, the addiction Psychiatrist I went too to get put onto methadone to help me come off the last 320mgs per day, said out of the many he treats in Derbyshire with methadone, I was the only one being treated to come off Oxycontin, the rest were all heroin addicts! Can you actually believe that at first he refused to treat me saying, if you go get addicted to heroin then I will treat you, but i can't unless you are! It wasn't till I got a fantastic drug charity involved to help me that he gave in & agreed to treat me!
The charities argument with him was that Oxycontin IS Heroin, only stronger as its manufactured.
Sorry ive waffled on for ages, good luck you're doing great & keep in touch
Ritchie xx
Hi Ritchie, it was good to hear more of your story, I've a couple of questions just me being nosy tell me to mind it. Why did you start on the opioids in the first place and do you have other mess and has coming off made any difference to them.
just so it's not all from you I'll tell you my story, are you sitting comfortably?
25 yrs ago I was 32 and had three small children aged 4, 5 & 6 whitest leaving work I missed the bottom 2" step and broke my ankle, I heard it snap owwww! Was taken to A&E put in a half cast three days later a full cast, it was ok I was hobbling around towards the end of the 6 wks, went to get the plaster removed and when the guy took it off he called for a dr, I've never seen anything like it it was mottled black, green and red it looked like a movie prop, any way a few hours and tests later they said I had
reflex
sympathetic dystrophy (RSD) next followed a year of physio and hydro every day except Sunday but it just got worse and more painful by the end of that yr I was on 5mg mst. Next came some sympathetic nerve blocks but they didn't work so they decided to remove my sympathetic nerves from the spinal cord but in doing so the damaged the nerves to right hip and groin and I got an abscess on my cord causing mor damage and pain, I then ended up in a wheelchair although I still managed to use my elbow crutches indoors. The next 13mths was spent in hospital they let me home for some weekends my husband was and is an absolute saint. They then told me of this new invention called a dorsal column stimulator I was to be the second person in the U.K. To be fitted with this and they said it would solve all my pain issues, can you guess what comes next? Yep it didn't work, so they'd now taken 2 discs to be able to get this thing in, when some healing time had passed they switched it on it was the strangest feeling but it did help with the pain for three days when it stopped working on the right leg and started on the left leg! So the did it again and again and again, each time ment 6wks flat on my back and the MST is going up after 13 attempts they sent me to see the top neurosurgeon in the U.K. At the Royal London. He said I can fix this no problem after 5 more try's I said that enough was enough and I wasn't playing any more, they weren't very happy but as you can imagine I couldn't take it any more, so they took all of the stuff out from inside me all except 2 small pieces of tattainum which have embed right in the spinal cord, that was the end of 98 and I have refused to play their game since so from that point there's nothing they can do for me other than pain management I'm under Chester and I also see
Andras Gobal at the Walton pain center, I take other meds, Tegrotol they like to use it for pain, Gabbapentin would be better but I'm allergic, propranolol For the headaches the OxyContin gives me and zopiclone to help me sleep. They also changed the name of the condition a few years ago to Cronic Complex Regional PIn Syndrome ( CCRPS) I've recently been offered som deep brain stimulation I'm sure you can imagine my reply, lol.
For me the first thing I think of in the morning is Pain and the last thing is Pain, to be honest it's always pain, I have learnt over the years how to help myself and that's distraction if you give both your hands and you brain something else to focus on it definitely makes a difference
well I hoped I've not bored you to death and thank you for reading.
incidentily I asked my consultant many, many times over the years if I would be addicted to the opioids and the consensus was that your body useses it in a different way for Pain I never really believed him but I do think that they should hold up there hands and offer as much supper as they can.
if there's any thing else you want to know please ask.
best wishes
Julie xx
Sorry Ritchie I waffled on for ever but just wanted to say we are not that far away I live in Cheshire, small world eh
Julie x
Hi Julie: I am so glad your physician is working with you. You didn't indicate what type pain introduced you to the opioid. Many people start with post-op, and feel they have to take all of them. Tapering is also very important. After my spinal stenosis I took Oxy for a couple weeks. I was still having a good deal of pain, and was very uncomfortable. Fortunately, I have a great fcp, and we decided on a regimen of Gabapentin and Tramadol. I can't believe how great I feel. The tram takes care of the DJD, and spinal arthritis while the gabby handles the nerve pain from the stenosis. If your pain is similar to this I would suggest discussing this with your family care physician. Good luck!
Hi Julie & wow girl, you've had some crap!!!!
And you thought yours was a long post!!!!! 😉😆
I don't mind you asking at all!
I tried co-codamol, my dad suffers with a back problem & he's on 800mg of that per day, he has for years & is still on it. My mum also suffers from back problems but she doesn't take anything for her pain now. So I guess it runs in the family!!
I was also told that my spine curves the opposite way to what it should do!
My partner got some free tickets last weekend to see Leicester tigers play. I love football but don't care for rugby but, because my partners son wanted to go I said we would take him.
We braved the drive from Derby to Leicester in the snow & parked at Walkers stadium that was. LCFC Football ground, caught a shuttle bus, I didn't take my walking stick as i thought I'd end up on my back due to the snow!!
Anyway, we came out after the game & the shuttle was a 25minute wait, my back was starting to ache due to being cold so I said we would walk the 15min walk back to the car.
I honestly thought I'd never make it. By the time we got to the car, I could barely put one foot in front of the other & could've easily have cried due to the pain I was in!
It's like the whole lower part of my back just cramps up from one hip to the other, tingling in both legs. My partner kept saying wait here & I'll go get the car but, I'm my own worst enemy as i often say no, it won't beat me. But im probably doing more harm than good!!
It's Degenerative Disc Desease & I don't think I should be In the amount of pain that I'm in.
My partner loves walking & I want to go with her but i can't as i know the outcome so we just don't go but i feel so guilty for that!!
I've thought of asking for a 2nd opinion but, that will cost money I just don't have. The last MRI scan I had was 5yrs ago that showed, according to the consultant at Derby pain clinic that I "had a back like a 70yr old"
It's due to where i used to work doing very manual labour from the age of 18. And since the last MRI scan if been in 2 bad car accidents through no fault of mine, one that I had to be cut free from.
I tried even morphine after refusing it as the name frightened me, but it didn't help the pain.
So my GP put me on Oxycodone to start with. Then after going up in dosage, switched me to Oxycontin which really did help at first, then it didn't, so she upped the dose & kept on upping the dose & the rest Is history. I later found out that Oxycontin was in fact Heroin & was 2.5 x the strength of morphine!
I've tried Gabapentin, Pregablin, amatryptaliñ etc etc etc, plus loads of others I can't remember the names of but nothing else helped.
Coming off the Oxycontin, yes my pain in my back is now so very much worse than it ever was but, I don't know if that's because it's "degenerative" & will get worse in time Anyway!
The very last thing I want to do is worry you Julie but, I really was in a mess towards the end when I was on 1500mgs of the stuff per day. I can't even remember half the stuff my partner tells me I did back then!! I just wanted my life back to normal which Is why I, not my GP made the decision to come off it.
It's taken me since August 2016 to the current day where I'm only now just starting to feel some kinda normal coming back into my life.
It messed with my head big time!
I lost my memory, I can remember things from years ago but i forget things I wad told today!! And I've just turned 50 this month!!
My sex drive was lost for 4yrs & my partner thought I'd gone off her! It was due to, "Opiate induced hypergonad Hypergonadism" according to my Endochrinologist consultant due to all the Oxy I took over all those years as my testosterone level was near enough zero!!
So now I have hormone Injections, it's brought the urge back but i need the help of those little blue pills if you know what I mean! At least my partner knows I love & still want her now! And I'm very happy to inform you that she is happy again if you know what I mean! ;-) hahahaha!!!
But, it really did destroy my life, but please I'm not trying to say this will happen to you as everyone is different & I was taking enough of the stuff to kill a herd of elephants lol!!
Today I suffer with pain all the time but i dont know if your body gets used to it, but i deal with it. It's because i have too & don't have a choice really.
I can be walking along & it's like a knife in your back & I think my legs will just give way on me & I'll be on a heap on the floor. Or, I don't live more than a 2 minute walk from the shops, I can just manage the walk there but, walking back with one or two bags of shopping I have to keep stopping due to this cramp in my lower back, the amount of people that have stopped to ask if I'm ok has put my faith back to know there are decent humans left in this horrible cruel world we live in!!
I've waffled enough so please take care Julie! If you need to ask me anything else at all you know where I am!!
Ritchie xx
Hey Ritchie, are we going to play who's is the longest?
Thank your for all that info I find it extremely interesting getting someone's take on how they deal withe all this .... that we have to deal with, I know what you mean about the loss of sex drive, I found that the Amitriptyline did that to me in fact it made me like a zombie, memory loss etc I was taking 125 mg each night my girls used to say we told you last night but I had no clue, I've not taken that for about 6yrs now and every time it's suggested I shoot it down when I stopped it felt like someone had cleared the fog.
Do you attend pain clinic? I'm sure that this is a bit like teaching my grandmother (if I had one) to suck eggs but these work for me when there's no more pain relief, DISTRACTION! If you have an Xbox or PlayStation etc find a game and when the pains really bad play, I know you don't want to cause of the pain but give it a go, also Lern some quick relaxation techniques and use them often (as holding yourself tight, and we do it without realizing makes more pain and makes you even more tired) the more you practice the easier they are to do when it's killing you. If you're in company be honest and get them to ask you lots of questions which you have to force yourself to answer, even though you want to tell them to get lost. When it's during the night (why is it always 3am) I put an audio book in my ears and play a stupid addictively game e.g. Candy crush, this last one is a bit strange, like me lol, I imagine my pain as a piece of paper and I screw this pain up tight I kick it and stamp it into to corner at the back of my head ( I know heads don't have corners)I won't allow that pain out, it's taken me a long time to be able to do this one and there are times when it wins but not often. I'm sure you probably do all this but it can't hurt to share eh.
You say about the guilt because you can't go walking with your partner I know how that feels I feel devastated that my girls and my husband have had to put up with me and my problems but if we are being realistic our partners don't have to stay they stay because they love us and don't want a life that doesn't involve us, not easy to remember when feeling guilty or is that sorry for ourselves?just putting it out there lol.
My eldest daughter is 32 and about 5 yrs ago her and her husband were sat in the back of my car, me driving they were talking about their childhoods she said "we had the best childhood ever, mum was always there we had no childminders and even when she was not to good she always played games and read to us" so I guess it's all about perspective. So don't be to hard on yourself, look at all the things you can do and all that you give.
i do some volunteering as a life coach for people with health problems, and everyone of them is carrying guilt but it's not doing them or their loved ones any favors, LET IT GO!
You poor thing being in 2 car accidents it must have been terrifying to have to be cut out, thank goodness you survived.
You say that you use a stick to help you walk, would you be deter with a trolley that has a seat, I know you don't want one old people have them but it would be more secure and when you have an attack you can sit and catch your breath, just think about it, I'd have one if it ment I could get out of my wheelchair but I can't walk so that's out, anyway who cares what others think it's you and yours that matter.
well that's enough from me for now, my husband William has asked me to pass on his thanks for your support, I told you he is a saint.
take care of yourself and of each other.
hugs Julie xx
Hi, thanks for taking the time to reply,well done you for getting your dose down, you say you've been on 150mg for 2 moths now, how long did it take you to get to this dose from your 360-500 mg? How soon did you start to get withdrawals and like Ritchie was the oxy all you thought about?
you are doing amazingly well, can I ask what you mean by the mental torture? are you getting support from your GP? and have you had to use any substitute for the oxy, So far I've not had any effects apart from a little extra pain but that's what frightens me the pain. Has anyone given you any idea of timeline, how long these symptoms could last.
all the best
Juliex
Hello, thank you for taking the time to reply to me. My story or journey has been a long and complicated onebut here's the basics, I wrote this for
Ritchie so please forgive any overlaps.
happy reading
Are you sitting comfortably?
25 yrs ago I was 32 and had three small children aged 4, 5 & 6 whitest leaving work I missed the bottom 2" step and broke my ankle, I heard it snap owwww! Was taken to A&E put in a half cast three days later a full cast, it was ok I was hobbling around towards the end of the 6 wks, went to get the plaster removed and when the guy took it off he called for a dr, I've never seen anything like it it was mottled black, green and red it looked like a movie prop, any way a few hours and tests later they said I had
reflex
sympathetic dystrophy (RSD) next followed a year of physio and hydro every day except Sunday but it just got worse and more painful by the end of that yr I was on 5mg mst. Next came some sympathetic nerve blocks but they didn't work so they decided to remove my sympathetic nerves from the spinal cord but in doing so the damaged the nerves to right hip and groin and I got an abscess on my cord causing mor damage and pain, I then ended up in a wheelchair although I still managed to use my elbow crutches indoors. The next 13mths was spent in hospital they let me home for some weekends my husband was and is an absolute saint. They then told me of this new invention called a dorsal column stimulator I was to be the second person in the U.K. To be fitted with this and they said it would solve all my pain issues, can you guess what comes next? Yep it didn't work, so they'd now taken 2 discs to be able to get this thing in, when some healing time had passed they switched it on it was the strangest feeling but it did help with the pain for three days when it stopped working on the right leg and started on the left leg! So the did it again and again and again, each time ment 6wks flat on my back and the MST is going up after 13 attempts they sent me to see the top neurosurgeon in the U.K. At the Royal London. He said I can fix this no problem after 5 more try's I said that enough was enough and I wasn't playing any more, they weren't very happy but as you can imagine I couldn't take it any more, so they took all of the stuff out from inside me all except 2 small pieces of tattainum which have embed right in the spinal cord, that was the end of 98 and I have refused to play their game since so from that point there's nothing they can do for me other than pain management I'm under Chester and I also see
Andras Gobal at the Walton pain center, I take other meds, Tegrotol they like to use it for pain, Gabbapentin would be better but I'm allergic, propranolol For the headaches the OxyContin gives me and zopiclone to help me sleep. They also changed the name of the condition a few years ago to Cronic Complex Regional PIn Syndrome ( CCRPS) I've recently been offered som deep brain stimulation I'm sure you can imagine my reply, lol.
For me the first thing I think of in the morning is Pain and the last thing is Pain, to be honest it's always pain, I have learnt over the years how to help myself and that's distraction if you give both your hands and you brain something else to focus on it definitely makes a difference
well I hoped I've not bored you to death and thank you for reading.
incidentily I asked my consultant many, many times over the years if I would be addicted to the opioids and the consensus was that your body useses it in a different way for Pain I never really believed him but I do think that they should hold up there hands and offer as much supper as they can.
if there's any thing else you want to know please ask.
Hi Julie.
I'll let you win the longest post lol!!
I do go to the pain clinic yes.
I've had 3 lots of injections but none worked. When I went to them 2yrs ago they said to get off all that Oxycontin then come back & see them, they'd give me an open appointment. Which I did, then they refused to see me after I was Oxy free! So i rang the NHS & reported them for refusing to see me. They saw me again in December & I'm now waiting again for injections. If it doesn't work again they want me to go on a course on how to deal with pain. Which will probably be all about what you were saying!which i will do but im thinking of asking for a second opinion on my options. Not sure what to do really.
It is funny why it's always 3.a.m why is that!? It's 3.a.m now & i normally look at my phone to see it's exactly 3.a.m!
I was on my way back from work on the M1 for the first one when this bloke in a van swerved from the outside lane all the way over to try to make the exit & rear ended me.
The last one I had to be cut out of, funnily enough the same week i had the last set of injections in my back! I heard a bang, the car sat down on rear end, puntured the back tyre & I clipped a car coming the other way & the wing mirror came through the window & hit me just above my eye & knocked me out. Luckily I could've been blinded a cm lower & having all the bits of tiny pieces of glass taken out of my eye brow wasn't nice. Thank God the other person was ok, it was a work colleague!!
I'm waffling again, tell William I said it's a pleasure & thank you!
Take care & catch you later
Ritchie xx
Hi Julie,
First thing is yes Oxy is all I thought about every minute of every day, and to be honest still is. I just know how to deal with it a bit better now.
I did it pretty fast from my highest dose of 500mg down to 360mg over about 2 weeks. It was awful though and definitely wouldn't recommend it. I was even taking seizures , probably due to the shock to my system. Then I went from 360mg to 150 over 3 months. Again I should maybe have done it slower but I am just desperate to get off these awful pills. My GP I think is a bit out his depth with this issue. He has been supportive but hasn't offered any help in the form of alternative medication. However, I don't want to replace one drug with another. My pain has actually stabilised now. When I was on a higher amount my pain was actually worse.
The methods I used though was to do yoga and meditation every morning and evening. I really helped my mental state. Think it took me away from everything for little while. I also have kept a diary every day, of every hour and write every feeling I have. For some reason it helps and makes you feel really good when you read back months ago and see how far you've come. My main advice is to stick to an amount that you can cope with and don't make any excuses to take more than that or you're on a slippery slope. I am going to reduce mine again next week by 10mg and try and do this every couple of weeks.
I also wrote a list of all the reasons I want to stop and look at it every time I crave taking more, or if I am under stress and want to gobble a couple of tabs to make me feel better. But I know now that it will put me back and I'll be more frustrated with myself.
I find every time I reduce them the worse withdrawal is in the first 3 days, then it becomes easier. I also take a multi vitamin and a high protein diet, even though I really don't feel like eating! Even smoothies with whey protein in them can help to repair your body.
I get very hot and sweaty in the morning, so I go a run or the gym at this time and try and sweat it all out. It feels pretty horrible but I'm not near as hot as I used to be now. I fortunately work for myself so I can work around this awful withdrawal, but managed properly I pray to God I can get by this.
If you need any help at all let me know. This is a super tough thing to go through and I have failed numerous times. But I've never managed to get down this low before. My GP think that this is a safe level for me to stick to. But as Ritchie and yourself have also experienced, my sex drive is rock bottom and my poor husband must be so frustrated with me. I just want to get away from the feeling of thinking about Oxy every minute of the day and get my life and health back.
Lots of hugs.
Hey, me again, what a nightmare with the accidents you were so lucky it could have been a very different story.
Asking for a second opinion could be good, would you travel to Liverpool? I only ask because Walton pain center are leading the worlds research in pain they also have a pain management center it's residential but what's a little in time if it could make a difference, you could ask your GP for a referral, I asked my consultant about 8 yrs ago and he sent me as well as staying on his books not that they could do much for me I was already doing everything from the management side and there's nothing for the
CCRPS but I still go once a year there's new things all the time and I see my consultant every 3 maths it's just a tick the box exercise.
Well that's it for now, see you at 3am lol.
Take care
Julie x