Help, received general letter from GP re opio... - Pain Concern

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Help, received general letter from GP re opioid prescribing & chronic spine pain

Truffs
Truffs

Hi, trying to keep this short, does anyone know the max dose of opioids that are beneficial in chronic pain please? My GP practice have sent a letter saying 120 mg per day of morphine or equivalent is the correct dose, no idea where they’re getting this information. They also have decided to reduce everyone in their care’s opioid dose without a consultation, surely that’s unethical too. Are there NICE guidelines re opioids...not worried about actually reducing level I’m on but want to know the beneficial recommended dose, feel like I need Pain Specialist help.

33 Replies
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I have Spinal Stenosis and I have found that reducing my reltebon to 20mg a day actually helped me to control the pain better. Obviously I am in no way pain free on such a low dose but it helps because I don’t do things anymore that hurts my back. Try it!

Truffs
Truffs
in reply to Gadget60

Thank you, do you remember what your highest dose was and how long did it take to come down to 20mg? Really reassuring to know that you feel in more control of the pain, even before the letter arrived had been talking about lowering my dose due to side effects and kept thinking why take so much opioid if lower amount will work the same for pain!

Thank you again, stay happy 😊

Gadget60
Gadget60
in reply to Truffs

I was up to 200mg a day but did not feel in control of anything let alone the pain. Reduced by 20mg per week until I came to my current dose. Not only do I now feel in control of my pain. I feel “Alive” and now socialise again

Truffs
Truffs
in reply to Gadget60

Thank you, that’s great...the tiredness but lack of sleep is just too much, fed up or rather getting depressed of being too shattered to not go out. However really do think Opioid side effects play a big part, ok not sleeping doesn’t help and that’s not going to change on a lower dose... 99% positive it’s not going to get worse though.

I can’t get appointment to see my Dr until 23rd March, make sure I go with comprehensive plan in hand!

We’re definitely on the same wavelength, just want to feel ALIVE...you really have given me hope 👏😊

The thing is, there is no dose of opioids that are beneficial for chronic pain. Opioids were developed for end of life cancer pain, but the clever drug companies told doctors that it was good for everything. Now we have this horrible situation where we have to undo all the damage done. Many doctors and therapists are doing a good job at this, but often in the overstretched NHS others struggle, hence patients like you are left high and dry.

The NICE evidence you want is probably this page.

nice.org.uk/advice/ktt21/ch...

There are links there that lead to other pages that you might find helpful. Good luck, I hope you find a way through this that works for you.

Truffs
Truffs
in reply to cyberbarn

Thank you, I was hoping there would be several good studies re chronic spine pain & opioid use that had been analysed, concluding that 120 mg morphine was max beneficial dose. However as I’m happy to lower my dose of Longtec/ OxyContin think 120 mg is something for me to aim for

Over time if your pain med dose is high it stops working your body just gets use to it. Pain just sucks !

Truffs
Truffs
in reply to Batty1

You’re right there...pain does suck!!

Hi there,

Where exactly is the damage in your spine, I might be able to help, having many many operations on my spine with the 1st op being 32yrs ago.

Been through all the opiods you could manage, are you on Oxycodone & Oxynorm/Oralmorph or something similar, do tell?

Truffs
Truffs
in reply to Del123

Take Longtec/OxyContin 80 mg bd Shortec/Oxynorm 10mg up to 4 daily. Plus other meds but only listed the opioids.

After having operations due to degenerative disc disease, spondylolisthesis, spinal stenosis, feels like there’s pain in muscles nerves & bones from nose to toes. No idea where to go for extra help so going to try & reduce my opioid dose to see if that makes me feel better.

Can you suggest anything, always appreciate any ideas? 😊

Del123
Del123
in reply to Truffs

Hi Truffs,

Ok been down that road and much much more. Please look into a "Medtronic Synchromed Pump" which turned my life around and now not taking any opiods orally.

Basically I started with a prolapsed disc which went wrong in surgery by nipping my spinal chord and after many operations for degenerative disc syndrome, they tried a Fusion of L2/3/4 which also failed, I was gulping the oralmorph whith all the opiod tabs to no avail. I had exactly the same with my right and left feet which went completely numb with shooting pains down both legs (sounds familiar?).

Anyway I flew out to America to talk to the first person who had this put in and enquired about this pump in great detail. After flying back 2 months later, I found out that the WALTON CENTRE in Liverpool will be getting the machine for patients in severe pain in about 18 months at that time which I had to wait (but it was worth it)🤯.

All this pain of your comes from a big problem with your spine and damaged nerves. Please look it up (maybe even on this site) and if you need any help whatsoever, please feel free to contact me.

This might help:

medtronic.com/us-en/healthc...

Please read withan open mind!

Hope tomorrow is better than today...

Dell

Truffs
Truffs
in reply to Del123

Thank you for your help, so sorry but I trialed a Medtronic pump 14 yrs ago, unfortunately caught C.Diff & ended up after 10 days on the trial having to leave the trial. I’m really happy it worked for you, do you have opioid in your pump? You say that you’re off all opioids but my pump would have been opioid based, although I was offered another trial with Baclofen which is indicated for Muscle Spasms in MS.

My pain’s from failed surgery in spine & exactly like you started off with disc prolapse 27 yrs ago 14 surgeries later have fusion from L5-T8 & C5-C4. Last operation was very similar to one that was on Hospital, they break your spine & cut out wedge of vertebrae then put rods screws etc to hold it back in place to form curve. It was similar except I already had the metalwork & rods, cages etc to from L5- T10, had to be extended due to 2 more prolapses over 1yr period.

A lot of the operation’s were to repair the damage from the 2nd operation, incontinence & vertebrae slipping, last one was to make sure I could keep walking upright. Pain wasn’t really the reason for the operation it was more function, sorry if anyone’s interested or yourself obviously I’d explain in more detail why & how the operation is performed.

Good luck with your pump! Hope it keeps the pain at level you can live with, message if you want to know more but it’s too complicated to explain on here 😊

Delboy1
Delboy1
in reply to Truffs

Morning Truffs,

It’s uncanny that my second operation was a major problem to most of my pain. Six months after the operation of the fusion, one of the screws come loose and rubbed away on the nerves😫. It’s a shame we’ll sign a disclaimer before any operation otherwise that you and myself would’ve won millions of pounds, still back to reality and you’re left in awful pain which I feel so sorry for you.

It’s a shame the pump didn’t work for you. When I said I am of opioids, I started off in the machine with diamorphine for about 10 years (On my third machine).

Of course the body gets used to it and have recently been changed to hydro morphine which is keeping the pain at a level I can live with. As mine drips the hydro morphine direct into the spinal-cord, it does not go into the bloodstream hence I get no side-effects from it at all.

It sounds like you really have been through the mill even more than me, I know exactly how you feel. From experience taking opiates and the amount that you’re taking only leads one way, the wrong way.

If you reduced all opiates you will find the pain still says at the same level it all depends on how long you been taking them as the body gets used to everything. I take it you’ve tried meditation which I now do on a daily basis, at least it gives me half hour relief every day which is something I guess! I’ve come to realise that it is what it is and I have to live with it. I don’t think I would let them touch me again as I believe it would get worse.

Please try and reduce your opiates which has many benefits not only your brain as I have recently had a brain scan and after taking opiates for 32 years has shown a lot of damage in the brain scan especially with memory and deterioration. However it will never stop anyone as opioids is the only thing that helps with the pain.

I wish there was more I could say to help you but I hope you find an answer to this terrible problem which so many people suffer with.

I wish you well in your endeavour to find a solution to bring you to the pain level you could manage the rest of your life, please take care and please keep me informed if you would of your progression x

Opiates can be helpful for some people with chronic pain including myself. It can improve quality of life and reduce hospital visits/stays but it should be used alongside other techniques such as visualisation. My gps clinical pharmacist said that substantial harm from opiates increase when the dose is the equivalent of 120mg of oral morphine. I received a letter too. I was looking online and came across an article in a psychiatric journal that suggested lots of doctors and consultants are concerned about a new blanket policy to stop opiates being used for chronic pain. They a written a letter in protest saying

"Patients with chronic pain, who are stable and arguably benefiting from long-term opioids, face draconian and often involuntary rapid dose reductions. Furthermore, the guideline has created barriers that have resulted in not only unnecessary suffering because of patients being unable to obtain the opioids they require to control their pain but also other problems. In desperation, patients in pain are turning to suicide or illicit drug use or being forced to turn to invasive treatments such as spinal injections that often provide little benefit.".

Some people will completely disagree with me but opiates have their place until there are other viable options. This situation also makes the medical cannabis issues seem ridiculous as that could be one of the solutions to the "opiate crisis". I have used legal cannabinoid oil to reduce my opiate use by a third.

Truffs
Truffs
in reply to katelee

Did you get prescribed the CBD oil?

After lot of reading not found any evidence saying that 120mg is max beneficial dose for chronic pain, got my daughter & 2 friends looking at evidence that they can access on their Uni course.

The letter will cause a lot of anxiety for some patients.

gilliedew
gilliedew
in reply to katelee

I so agree with your take on opioids. I went through the painkiller from paracetamol, ibuprofen, amiltryptaline, tramadol, buprenorphine and now Fencino patches over a ten year period. Although some worked, they stopped after a while but the Fencino has had me stable for about three years after I found the right dose. I am on patches, I do not ask for them to be increased and they keep me able to walk with sticks or a walker. Now, I have severe osteoarthritis in my hip and need a replacement hip operation. To get this I have to come off Fencino but of course my back pain will return. I still have tolerable pain in my back so I know it is still there but am in agony with my hip that any extra pain will be excruciating and cannot face the thought. Opioids have helped me with my chronic pain and those doctors who say they haven't when I am the one experiencing this is quite beyond my comprehension. As there is not a 100% of patients their research says it will not help, what about the percentage of those who know it does help, they are being forced to return to medication which has not worked in the past. I do not get anything more than pain relief but am at the mercy by those abusers who use it for personal highs.

Absolutely, it caused me anxiety. I had extreme levels of pain for over 10 years before I was given adequate opiates and since then I have had many doctors telling me that I need to come off them but don't offer any alternatives. I wasn't prescribed the cbd oil. After doing some research I decided to buy a Medipen which you use like a vapour. I wasn't expecting much tbh but it works really well. Last time I saw my gp I asked if I had decreased how often I order my oxycodone and she said that it had reduced by a third. I am on fentanyl patches as well.

Truffs
Truffs
in reply to katelee

Sorry the letter caused you anxiety, it had arrived 2 years ago it would have caused me major problems, panic attack.

My Dr won’t offer any alternative to me either, well done in reducing your opioid’s yourself. I’ve wanted to try CBD oil for a while, never though of using it like you are, do you buy it online from 1 supplier? Message me direct if you don’t want to say on here but you’ve obviously researched this & it’s working for you too 😊

katelee
katelee
in reply to Truffs

After some research I chose medipen and I bought both the device and oil from them. It does mean you are stuck with them but I find the prices reasonable and their customer service is excellent. You pay about £50 for the device including an oil cartridge and then its around 20 to replace the cartridge. At my worst I use about 1 cartridge a month. The problem with cbd oil being unregulated is its difficult to work out what is the real, how strong it is etc. The Medipen is completely legal and the site said it has done trials with the NHS and because it was reasonably priced I gave it a go and as I said before I didn't have any expectations and it's been brilliant. I haven't had any side effects and it makes me wonder what the proper medical cbd oil would do. Most of us just want alternatives to opiates that does not lead to living with uncontrollable pain as opiates are not fun.

Truffs
Truffs
in reply to katelee

Thank you for that information, my friend has MS & was one of the 1st to be prescribed the Cannabis spray. She isn’t in any pain even though she can’t move a muscle, doesn’t take any other type of pain killer only paracetamol for headaches.

Think I’ll try it, if CBD helps me reduce my level of opioid and pain isn’t increased brilliant!!! My problem’s been what one do I try? So I’m definitely going to try the pen & if it doesn’t work move on to something else 😊

katelee
katelee
in reply to Truffs

I have a friend with MS who has been unable to get the spray prescribed until now. She has an appointment with the consultant next month but she has to pay for a private ambulance to get to and from the hospital. Its seems to be tough in Sheffield to access it at all. I hope you find cbd oil helpful.

I noticed that on the other posts people are talking about pre-gabalin and gabapentin which I will not ever touch again. As they are mental health drugs so work on the brain the side effects can be life changing and permanent. I was left unable to walk as a result of muscle weakness and I was taken off gabapentin straight away. It has never happened before or since.

Have you ever tried hydrotherapy? It's like a bath so it is so soothing and it makes stretching and general movement so much easier. I had it through my pain team and found a public hydro pool to carry it on.

Hope you are having a good day.

katelee
katelee
in reply to Truffs

By the way I just got a voucher from medipen via email as they often have offers. It's probably worth signing up to the site and wait a day or so to get some money off. Or I can give you the code if you would like.

Hi Anne, did you get my private message I sent it's nice to hear from you again , sorry you are still in pain , like I said before I take pregablin which takes the edge of the nerve pain. Clive x

Truffs
Truffs
in reply to Longsider

Replied but not sure if it’s to you check your messages let me know please 😁

Truffs
Truffs
in reply to Truffs

Originally started taking Gapapentin 17 yrs ago on Hospital double blind trial, they’d had no correct results on patient opinions except on mine. Taking 1800 mg daily no side effects.

However moving to last operation, pain team increased my dose to 2700 mg side effects were too much, felt very sick, completely lost my appetite which in turn made my bp drop. My infection rate was double for the operation so knew had to eat to make sure my body healed & repaired itself. Dropped back down to 700 mg, it works for some nerve pain but not femoral nerve pain, worried if I change to Pregablin it wouldn’t have any benefits.

Have you ever tried Gabapentin? Lots of people changed to Pregabalin because of side effects, going to lower my opioid intake 1st then tackle other meds!

There's no beneficial dose as this type of medication is addictive & very likely to shorten one's life.

Can you ask for a referral to your nearest pain management clinic for a consultation & further referral for a pain management course or to your local support group.

There are other options available that have no negative side effects, only benefit. I use an infrared lamp for several hours a day, & I'm having success with neuropathic pain using B12 injections & eating more folate (B9). Gentle exercise such as yoga & QiGong can stretch & relax the muscles in painful areas as well as alleviating joint & spinal pain. Acupuncture & using a TENS machine are other options, & practicing acupressure is easy & free. Some people benefit from gentle swimming or aquatic exercise, & the heat from saunas.

Truffs
Truffs
in reply to BadHare

By beneficial dose I didn’t mean one without any sort of side effects or damage, something that still helps with pain at much more reduced level than majority of opioid users are taking including myself.

All of the things you’ve suggested should be tried before opioids are prescribed, I’m not going to go through each one & explain why they don’t work for me personally.

Please remember that some people have spine conditions that they were born with & lived in pain for majority of their lives, if only it was as simple as gentle exercise & using TENS machine nobody would be taking pain medication for pain

Most GPs avoid prescribing opiates for chronic pain as you soon build up a tolerance and require more. There are exceptions. In my case I have severe osteoarthritis, complex regional pain syndrome, widespread chronic pain syndrome and fibromyalgia. My GP as prescribed many non opiate medications all of which were either of no use or I could not tolerate them. I was sent to both pain clinic and on a pain management programme with limited benefits. To cut a long story short I am on two types of opiates both of which I use as required.

Pinty
Pinty
in reply to Badbessie

Same here, tried many other forms such a Gaba's and PreGaba's etc but they upset my system so badly had to stop them... :/

I too have a host of issues that are causing high pain levels and global. I am currently prescribed 4x 60 mg doses per day of Dihydrocodeine plus Naproxen when needed. They are not really helping my pain very much now. I have attended the pain clinic and advised re: a Tens unit but that does not help with all the pain only when my neck or lower back is in a state of tension, It does not help the nerve pain. I have to say also that one day I forgot I had taken my dose already and took another 60mg an hour later, I realised not long after what I had done but the pain relief was no better. The next medication up is Morphine, I am trying to avoid going down that route but now every night is agony and I am struggling 24/7 to cope. What is the answer I have no idea. Good luck to you all x

The medication definitely sounds like it’s not helping your pain, especially nerve pain which seems to be big problem with a lot of people.

If you do decide to try Morphine please remember it does not help nerve pain, talking from my own experience, other people’s & from medical research. Sadly can see that you tried Gabapentin, Pregabalin which are the most common nerve pain treatment, so sorry the side effects were too bad.

As I don’t know where & why you have nerve problems it’s difficult to know what to say, just try everything before you make the step up to opioids & definitely don’t do it for nerve pain.

Good luck 😊

What country do you live in? If you live in the US the CDC created a Widespread Panic among doctors who prescribe opiates. And their recommendation is not more than 90 morphine milligram equivalent which is not the same thing as 90 mg. If you live in the US I can give you a lot more information however if you're living in the UK or another country I'm afraid I can't help.

Truffs
Truffs
in reply to Amkoffee

No I live in the UK, however if you feel that any info you have re opioids would be beneficial you’re welcome to message me privately

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