Next step up from oramorph??

[Lanadc88]

Hey everyone so I’m currently on a lot of medication for my chronic pain the strongest painkiller being oramorph. I’m now finding that I’m not getting much relief at all from the oramorph and I’m going to call my doctor to suggest changing it however I have no idea what the next step up from oramorph would be any suggestions that I can mention to my doctor please?. Thanks

[FRreedman]

The problem with Oramorph, is you have to be in pain, in order for it to work to its best advantage. Yu may be better off with something like Zomorph, which is a slow release form of morphine, and is taken twice a day (whether you feel in pain or not), and you then use Paracetamol for breakthrough pain. You or your GP will, obviously, have to decide exactly which drugs to use, because there are so many now, that it is impossible to keep up unless you are involved with them. Good luck, and please, keep us informed of your progress.

[Lanadc88]

Thanks for your reply, that’s just it I’m in constant pain and oramorph takes the edge of for an hour or 2 and then I have 2-3 hours to wait again for the next dose and nighttime’s are just horrendous lol. I’ll keep you informed if I ever manage to get through to the doctor

[Lifesuckstoo in reply to Lanadc88]

I take exactly what FRreedman has said. It takes time to find the best strength of Zomorph however. Good luck x

[Lanadc88]

Some to doctor yesterday and she just changed my instant release tramadol to slow release tramadol and said because I’m only 31 they don’t want me building up a tolerance to the stronger painkillers yet 😤

[Hidden]

What is the problem that is causing your pain?

[Lanadc88 in reply to Hidden]

I have fibromyalgia , chronic back pain caused by over sensitive nerves and kyphosis,Ehlers Danslos syndrome and ulcerative colitis which when it flares up also causes me pain in my joints

[Hidden in reply to Lanadc88]

You do have a catalogue of ailments. Commiserations.

[Lanadc88 in reply to Hidden]

Thank you, it is what it is I guess and we just have to get on with it the best we can

[Milkbottles]

We all understand what it is like to be in soooo much pain and nothing seems to work but please be very careful. I have now built up a tolerance to Oramorph so it no longer works, unless I take more than I do. The outcome of that I would become yet again tolerant of that level so would have to increase again, so you see the cycle. You could eventually accidentally overdose not meaning to. An A& E consultant has told me any injuries I have now, there are no meds that would work. I would like to come off opioids but the pain I experience with them destroys me. The medical professionals have nothing to take there place to kill pain. They do not understand what our life is like because they have never experienced what we have. So please be careful.

[Lanadc88 in reply to Milkbottles]

Hi milk bottles yeah I totally understand the fact our bodies get tolerant to the drugs and using a lower dosage for as long as possible or finding alternatives is a much better way than turning to

Stronger opioids or stronger doses. I’m tolerant to tramadol now over the years of being on it but doctor has change to slow release to see if that has a better effect before considering anything else and even then it will be a case of upping the likes of pregablin and amytriptaline before we have to move onto higher opioid doses or stronger ones all together. Thanks for your reply it is a scary thought not having anything to help if you got injured.

[deejames in reply to Lanadc88]

I was on high dose of tapentadol after years of moving up through the ranks of opioid medication. I had a spinal fusion operation and experienced terrifying levels of pain when I came round. Nothing could get the pain within manageable levels except ketamin which knocked me out again.

This uncontrollable pain was, I think, due to having increased my tolerance to pain medication so much.

Now I take the minimum I can cope with.

Dee

[Lanadc88 in reply to deejames]

Yeah I stick to as little as I can which changes day to day it’s just so frustrating never knowing how the pains going to be from one day to the next

[Fenric71 in reply to Milkbottles]

Yep I did that. All you want is the pain to go away and you don't care how you do it.

[Lanadc88 in reply to Fenric71]

Pretty much yeah it’s eased back to normal levels now but the fatigue is crippling me

[Fenric71 in reply to Lanadc88]

Oh I do to. I hate the hot flushes I get (even being male!!).

Happens everytime I eat too.

[Lanadc88 in reply to Fenric71]

Hot flushes I can cope with it’s the tiredness that’s killing me lol

[Fenric71 in reply to Lanadc88]

I hate both and I also get so mad when you're so bad and you have to cancel something and you get a nasty answer.

They need to start taking us serously.

30 years ago I was a trainee murse. I got glandular fever and have never got back to study.

People who doubt you make life 10x worse than it has been.

Education might help them.

Sorry hetting off soap box now.

[Lanadc88 in reply to Fenric71]

Yeah it’s crazy 10 years ago I was a qualified chef now I’m home all day lol it’s so annoying. I do have my own freelance writing business ( not that you can tell by how I word things and type on here lol) but some days I can’t even commit to that and feel awful cancelling and putting back jobs it’s just so hard some days, like today I’m so fatigued iv just laid in bed all day it’s 2pm now but iv told my partner we’re going shopping when he finishes work just so I can get out get some fresh air and do something as iv been stuck in all week with terrible pain

[bonniemillie12]

hi there i have tried every pain killer there is and unless i take just over on my morphine i dont get any respite wish i had never taken any of these strong pain killers as they have gave me so many side affects i cant function so what i am saying is be very carefull what you wish for because these strong painkillers have a lot off side effects i do hope you get something that gives you relieve

[johnadams in reply to bonniemillie12]

How did you find methadone ? I’ve been told it’s really good for chronic pain including nerve pain and lots in the US are on it. I was told I’d take it 3 x a day.

[Lanadc88]

Thanks Bonnie as I said earlier me and my doctor are exhausting all other options before considering anything stronger so hopefully we’ll get a combination that works

[Amkoffee]

As I understand others have said, you might consider taking a long-acting pain killer and a short-acting painkiller for breakthrough pain. That is the best kind of coverage you can ask for. That being said I have heard other people with fibro say that pain medicine doesn't help that type of pain. I think they use the nerve pain pills such as Gabapentin or pregabalin. Since I don't have fibro, I don't have any personal experience to share with you. But your other conditions such as Ehlers Danslos syndrome. I understand to be quite painful and opiates are really the best option.

[Fenric71]

Have you considered morphine patches? They come in all different doses. They also are slow release... when I was on it so your body would lower but continual.

Hope this helps.

[Lanadc88 in reply to Fenric71]

Doctor won’t give me any patches yet

[Fenric71 in reply to Lanadc88]

That is so stupid of them. Probably something to do with budgets!

I don't know if I said Amitriptyline? That so a very cheap med.

[Lanadc88 in reply to Fenric71]

Yeah I’m on that a very low dose though I was on 75mg and coped well but this send time around I’m only on 20mg and my god I can’t wake up of a morning even if I take it at 6pm and asleep by 10 I struggle to wake

Up before 9 it’s a nightmare

[Fenric71 in reply to Lanadc88]

Unfortunately, again your body will get used to it, my friends have said the amount of it I take but could drop a rhino!!!

[Lanadc88 in reply to Fenric71]

It certainly could I thought it would be a walk in the park after taking 75mg before but I can never remember being this tired on it the first time round

[Fenric71 in reply to Lanadc88]

Yea at 75mg it becomes anti-depressent as well as pain relief. I take 200mg.

I find it has personally been one of the things that has helped both with mental and physichal.

But unfortunstely there is no wonder drug.

I wish I could give more advice!

[johnadams in reply to Fenric71]

Morphine patches don’t exist. It’s buprenorphine or fentanyl.

[Fenric71 in reply to johnadams]

That is true but it is still an opiate with morphine at the heart of the drug and it took me a few weeks to get off it! I am opiate free 1 year, and to be honest I found out at the dose I was on was not working, so my Dr said about coming off of them, and I did.

I am still in a lot of pain but I avoid codeine too. Not allowed any of the ibruphen family.

So I am on just Nefapan with diazepam and Amitritryline.

[CanuckAnon]

I take CBD for my nerve pain which causes my chronic migraines and neck pain. It dulls it from a 7-8 to a 3-4 which enables me to live rather than exist. I also get nerve blocks 1x /week as I can’t afford Botox injections. I get that this is not pharmaceutical but I have found no narcotic pain killer that cuts thru my pain. They only seem to knock out the noise I call it from pain like tinnitus, dizziness and nausea. When I tried CBD for 1st time it was like a switch turned off and I was out of stabbing, burning, squeezing, pounding pain. Nerve blocks have same effect but last for 4-5 and sometimes 6 days. THC helps me with muscle tightness, appetite, noise from pain and the anxiety, not focusing I get from pain.

Just a completely different point of view and experience is all.

[Lanadc88 in reply to CanuckAnon]

I take CBD I vape it and also have the muscle balm cream/gel rub which really helps. I don’t vape CBD as much as I should so maybe I should concentrate on finding out how much of that works best. Thank yoy

[CanuckAnon in reply to Lanadc88]

I have a 21% CBD strain that does work pretty effectively currently when I vape it at approx 0.3g increments sometimes as much as 8-9/day when it’s bad.... I also take it in by eating special gummy bears and coconut oil by oral syringe by 5-10ml increments on really bad days as I can’t move so sitting up to vape is really hard. I have never tried the balms yet.. thx for idea.... I do change up supplier for CBD so I never build up tolerance to the strain... that helps I found hard way.

I worked in health care before and now I’m home doing whatever so I get how u are feeling... you are most welcome.

[Lanadc88 in reply to CanuckAnon]

I don’t really know what brands are good and what aren’t I have tasty CBD 2000mg for my vape... I’m new to CBD do don’t have a clue lol I did have the drops you put under your tongue but I couldn’t cope with the taste.

[CanuckAnon in reply to Lanadc88]

Ya the coconut oil takes some getting used to for sure... some people dip bread in it - I just take it straight squirted into mouth... as for brands I don’t know I just use different suppliers (online), go to the weed store intermittently or someone I knows that grows a CBD sativa strain. I mix it up so I’m never taking 1 strain for too long.... I vape CBD dried bud so I don’t know what a tasty one is... mine tastes/smells like marijuana which I’m ok with...

[CanuckAnon in reply to CanuckAnon]

I have seen cookies, fudge and such as well but with a gluten intolerance I am limited with baked goods...

[Lanadc88]

Yeah I have seen the baked ones I’m not to sure on them, I think I’ll stick to my flavour infused ones lol

[CanuckAnon in reply to Lanadc88]

It can’t hurt to try baked goods. I have had good results with gummy bears and juice. It’s a more body numbness and slow release pain relief when you eat, vape for me is like hitting the pain direct but lasts 3-4 hours max. Eating is 6-8 hours max.

[Lanadc88 in reply to CanuckAnon]

Yeah I guess it would work really well I’m just a real wimp with weird flavours lol

[CanuckAnon in reply to Lanadc88]

Lol how bad could a chocolate chip cookie taste? Brownie?

[Lanadc88 in reply to CanuckAnon]

Probably not too bad when you put it like that lol, however the man I got my CBD from tried to give me some CBD biscuits and my god I smelt them and almost chucked up... so I decided from that moment to stay clear of the foods lol

[CanuckAnon in reply to Lanadc88]

I can see why... my gummy bears smell and taste like gummy bears. The juice is not so good but I found if I mix fresh berries into it and freeze it like a popsicle it improves the taste and cut the aftertaste.... look for baked goods that have strong flavours in them like chocolate. I’m also allergic to chocolate so I stick to bears....

[Lanadc88 in reply to CanuckAnon]

I reckon I could deal with gummy bears as sweets are my ultimate downfall lol soon as a bags open they have to all be eaten lol

[CanuckAnon in reply to Lanadc88]

I did that 1 time and are all 5 in a span of 20 mins.... lmao I was zombified lol.. so now it’s take 1-2 close the bag and put them away out of sight..... i split the juice into 2 as well so each is either 50 ml or 100ml as I can’t remember the size of bottles...😊 the balm sounds like a good idea for massages though or neck/shoulder rubs... does it work like voltaren or a5-35 is supposed to work but doesn’t?

[Lanadc88 in reply to CanuckAnon]

It’s a million times better than voltarol in my opinion ... where are you based? Do you have a Holland and Barrett store near you ?

[CanuckAnon in reply to Lanadc88]

Canada. I can get it at the legal recreational pot stores here... or my online medicinal dispensary... I never tried bcuz of price of it... in case it was not effective.

[Lanadc88 in reply to CanuckAnon]

I find it very effective I use it when my joints and back are really bad and when I go to bed as it seems to help with the morning pain and stiffness

[CanuckAnon in reply to Lanadc88]

Great to know! Morning stiffness sucks. So rubbing on my neck and spine could potentially help with clenching and guarding which only serves to pinch nerves more...

[Lanadc88 in reply to CanuckAnon]

Exactly I’d certainly give it a go I’m sure you can get some cheaper alternatives mine was £20 for a 50ml tub I don’t know how much that works out as in Canadian dollars but it was worth every penny

[CanuckAnon in reply to Lanadc88]

35 Canadian so not too bad... I remember 50-75 for a small pot about the size of a small Nivea pot.... not sure on mL . Will certainly check them out!

[Lanadc88 in reply to CanuckAnon]

Good luck

[Emma2017]

How did you get on with the slow release tramadol??

I was put on that and it lasted 12 hours, so twice a day. I then went into hospital last month for a spinal fusion plus a laminectomy a bit higher up. They gave me the quick release tramadol 4 times a day together with my usual dose of pregabalin and oramorph at night but I was very dopey on it and they wanted me to move so changed my tramadol to nefrapam which made me hallucinate so it was changed to dihydrocodeine plus paracetamol. Funnily enough I found that the dihydrocodeine plus paracetamol worked quite well where as previously cocodamol did nothing. Have weaned down to just night time dihydrocodeine now but thought I would mention it.

[Lanadc88 in reply to Emma2017]

It’s really helped with the pain which I was surprised about due to the dose but I have found that the fatigue is a killer at the moment and that’s the only thing that’s changed and it is also a symptom. I didn’t think I’d get any side effects as I was using the instant release for years with no issue however these slow release ones are knocking me out lol but I’m gonna stick with them as they have improved my pain and hopefully my body will adjust to them in a week or two

[Emma2017 in reply to Lanadc88]

Ah that’s good. Yes they are quite different I found as it keeps a permanent amount of tramadol in your system for 12 hours. I fond them quite helpful.

But as I was taken of them I am now coping with above meds. Good luck with all your issues and am pleased for you that the meds help. Hopefully you can keep the conditions under control somewhat and get on with things.

[Lanadc88 in reply to Emma2017]

Yes definitely thank you for all your advice

[johnadams]

If it only lasts a few hours then the truth is maybe long acting like MST or zomorph is the way forward.

Not sure it’s a good idea to move to something stronger like oxycodone which is 1.5-2 X stronger, or fentanyl patches as an example.

If you are on tramadol and they don’t really want to put you on high strength opioids tapentadol might be an idea as it binds to other receptors not just opioid ones.

[Lanadc88 in reply to johnadams]

Thank you they did change me to slow release tramadol but whilst they worked ok for general pain ( same as usual tramadol) they don’t seem to have a good effect when in a big flare up