I suffer with a degenerative disease of my lumbar spine I have been through the pain management system twice. At first I was perscribed 400mg of MST Continus, 12.5ml of Oramorph, codeine, amitripyline, gabapentin which was a very large prescription. After a while I went and on my own fruition I reduced my levels due to being very conscious of the amount. After many trials and exhausting all treatment options I was finally put on a prescription of 7x30mg codeine, amitripyline, gabapentin, 120 mg of MST Continus twice daily. Which I was told was a maintenance dose and in the event of a flare up my MST would be temporary increased until my flare-up subsided. I stayed on this perscription. In the event of moving to another location I joined a new Doctors surgery. Due to the level of analgesic medication I was taking I was asked on the behalf of my Dr and the Partners to attend a Specialist Input and Review with regards to my medication. I attended all meetings and discussions took place and I was given the ok and I continued to take that prescription for two years. Unfortunately my Drs of 30 year tenure was up and he retired. I then saw the Dr that on occasions I saw when my main Dr was away or sick. Due to past experience and mistakes that have happened I only see one Dr. " to many cooks spoil the broth" My new Doctor wrote to me saying she and her partners were concerned regarding the amount of analgesia I was taking. To show that I wanted to comply and show I wanted to work collaboratively with them I reluctantly reduced my MST Continus by 60mg. This was the biggest mistake I agreed to and has happened to me. I have been in pain even since. I have been to hospital on a few occasions. Even taking to hospital after taking being on holiday. I have suffered with serious pain and spasms and my Dr remains stoic and even wants to further reduce my pain medication. I have had many appointments to try and reason and justify to her that I'm in serious pain and my day to day activities have seriously suffered. I have also had a very serious infection on my leg which I have had many, many appointments with my Dr a Hospital appointments and one 9 day admittance in hospital. I have had 4 different diagnosis on which all turned out to be incorrect. I am in pain and at the end of my tether. I have always had great trusting relationships with my Drs but this is different. If I cannot get help and pain relief from the people who are appointed to look after me then please can someone advise me on what to do. Many forums I have been on have told me to smoke cannabis. I have never smoked in my life and I don't intend to now. What other choice have people got to receive pain relief. Do I need to go out a seek the local drug dealer for help??? This is serious guys.
All the best
Take care
Darren
Written by
Daz75
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I know from experience that GPs review your medication on a regular basis, they are also driven by government directives to reduce and try to even get people off pain medication.
This should not be an excuse to leave somebody in pain and to restrict their daily activities, I think that’s covered by the human rights act...
As a short-term relief, I wouldn’t advise to start to smoking cannabis, I take gabapentin, codeine now and again and use CBD oil to help increase my daily activities or when I need to go out and about, this still leaves me in more pain for a while after pushing myself but you have to have some sort of life I guess....
Thank you for your response. Yes pacing helps but I'm like you I end up doing a bit to much and then paying for it. Well I used to. I'm just in pain at the moment and I am unable to get alot done.
Hi I know how hard it is to get continuity of care. My GP retired after seeing her for 30 years. I waited a year to get a reducing programme from my pain team. I’ve eventually got one and have phone consultation with the hospital Pharmacist and zoom with pain psychologist. Finally a plan! My pain specialist swopped me from MST to Methadone liquid as it stays in your system longer. I have a spinal cord stimulator now to control my pain which I can turn up and down. Cbd oil didn’t work for me but it may for you. Take care
I said the exact same words 14 years ago..no cannabis.Well...Im glad I did.I use medical marijuana n it saved my life in many ways.If ya read my profile,I'm a med disaster.Severe chronic pain 24/7 n etc.Meds worked,then they didnt,then allergic reactions,then docs didn't help.Dont throw it off the table completely,as I'm glad I didnt.
Hi. Can you tell me which strain/s you use please? Tried getting Sativex on the NHS, but 'apparently' it's only for M.S sufferers.
Obviously I know the higher the CBD to THC content, the better for pain relief (I've tried the high strength oils/capsules and unfortunately they don't work for me).
Think the stuff I was given before, which I vaped, was too strong and I just ended up high! Was thinking I might give it another go though. I'm desperate. My meds are gradually being decreased in strength (from Fentanyl to Buprenorphine to Tapentadol) even though my pain is through the roof. I have a family member who grows a lot of stuff from scratch and would be willing to help. Thanks. x
CBD does nothing for my pain n etc.I personally use only THC(flower) n medical marijuana,as it does not get u high per medically grown.Strains that work,vary person to person.A reputable licensed dispensary is best option.
I'm in US n things here r different from other parts of the world re:medical marijuana.
Hi. Thanks for your quick reply! Will have to do some more research. I'm aware that in some States in the U.S Marijuana is prescribed for pain relief. We're not so fortunate in the UK. Although they are pretty lax about possession at least.
I used to be concerned about the stigma, but honestly, I hardly see anyone these days and I'm pretty much beyond caring anyway!
Am glad you've found something that works for you xx.
P. S. Good luck with the elf job this year. Let's hope it goes better than it did last time! 😁🧑🏼🎄
Feel free to reach out to me if u have any other questions.When I first went this route I had no help n noone to answer questions.I was a guinea pig.For me,my options ran out n prescription meds were killing me,literally.Never thought I'd be using medical marijuana, but..u have to help urself n make the best choices for ur own body .Btw..This year I plan on staying under the radar with Santa re:my elf antics,lol
Hi Daz75, you will find this is a money saving decision by Central Government, the problem is it's costing more! I have cut down to where the pain is just about at my coping level. I have seen my GP and he was pleased that I had done so but wanted me to cut down even more! Thankfully the Consultant who sees me at the pain Clinic is approachable, so I spoke to him an appointment was made and I went to see him, After I explained the situation I was put back on the original dose of Oramorph he also marked "Do not alter medication without Speaking to him first"! My GP was sent an email or letter and I have not had any medication problems since.Please Always try to speak to your Consultant if you are not happy with your DR'S decision. CONSULTANT Overrules a DR, .
I go to 2 separate ones for different diseases. They help and are at my hospitals and one is run by my rheumatologist consultant. The other is for neuralgia pain.
I see so many consultants and am on many medications. As are you. But my main pain management is a patch I change every 3 days.
Is there another Doctors practice you could change too? Sounds like yours is not sympathetic to long standing health issues and pain management.
I have explained this fully in past post. I was diagnosed as having a degenerative disease of my lumbar spine I have totally exhausted the pain clinics. I have had all Conservative treatments and was put on a prescription which I can assure you was not done lightly. I have been on the perscription for 2 years until my main Dr retired. I have even had a Specialist Input and review on my medication due to the levels which were a concern with my main Dr and on behalf of the Partners. I reiterate when my main Doctor retired I went to see a different Dr which I saw when my main Dr was away or sick. I am a stickler for only seeing one Dr as "to many cooks spoil the broth". I was practically made to reduce my morphine by a half and I am having on chronic and severe pain but my Dr WILL NOT increase my medication or try to attempt the issue of my medication not having the desired effects it did. I have always argued that they should of kept me on my original perscription as the reason I engaged with the Pain Clinics on the referral on two occasions. I have tried to reason and communicate without jeopardising our professional relationship but it has been to no avail. My day to day activities have got worst and I am left in pain. This day and age no-one should be left in such pain and worry.
Hi Darren. I am truly sorry this has happened to you xx. Ever since the opioid crisis in the US, GP's and Pain Management have become really jittery about prescribing opioids in the UK. They are audited regularly and I have been told by several Doctors that their main priority is to themselves and keeping their licences - who cares that Chronic Pain patients are in a living nightmare and resorting to taking their own lives and devastating families? 🤬
I too had DDD, but had a Fusion in 2014, which failed. I was on 800mg Fentanyl, 600mg Oxycontin, and 120mg OraMorph daily. I also tried to come off (I got absolutely no support from my GP. Who even advised me to go Cold Turkey. What a totally irresponsible and stupid thing to advise! 🙄). I just couldnt cope with the pain.
I know exactly how hard it is butting heads trying to get adequate pain relief. It causes as much anxiety and frustration as the pain itself at times. I also had an MDT meeting and they stuck me on Buprenorphine patches 35mcg. I ended up in A&E multiple times and they eventually put my patches up to 70mcg. These were useless for when I had breakthrough pain, and I had to phone the Pain Clinic in tears every day for 2 weeks, begging them for Buprenorphine IR tablets. I was absolutely at the end of my tether. They gave me 3 a day. That covers just ONE episode of BT pain. Now I cannot do anything except lay in bed. My MH is at rock bottom and my poor Husband is at his wit's end watching me suffer and not knowing what to do.
It's heart breaking that you are having to go through this. Pain Management are so focused on getting people off opioids because long term they are not good for you. Yet they fail to consider that at this rate, there won't be a 'long term' for many of us, because we just cannot cope day in day out in such extreme pain. Their attitude is truly appalling - they wouldn't let a dog suffer like this, yet they expect the most sentinent creatures on the planet to. It really is appalling.
Given the choice between a shorter life on strong opioids, but with less pain and more function. Or a longer one on weak or no opioids and a crap load of pain and zero quality of life, it's an absolute no brainer for me. I'm only 42 and I sure as hell won't be around that much longer at this rate. The idea that I would carry on like this for another 10-20 years is absolutely laughable. It's also tragic, when you have children to consider 😔.
Sorry for my rant. It just makes me so bloody angry for all of us!!! 😡 😡 😡.
You say you have exhausted the PM system. Is there any way you can see a different team? Or change Doctors, which I am in the process of doing. There is no guarantee that they'll agree with you, but it may be worth a try. You could always try escalating it through the Patient Liaison Service or writing to your local MP even.
I'm guessing that no one has discussed surgery with you? I for one wish I had never had a Fusion, but just had my prolapsed discs shaved. There are other options, such as Spinal Cord Stimulators, or Nerve Ablation. If you haven't already, it may well be worth seeing an Orthopaedic Specialist (although I'm presuming that's how you found out about your DDD in the first place).
I know what you mean about going out into a street corner. I've tried cannabis, but it didn't do much for me, except make me high, which I really didn't like. It's the CBD content that makes the difference obviously and there are plants that are grown specifically for pain relief. But you'd have to know someone that really knew their stuff or grow your own.
I really wish I knew what else to suggest apart from all the normal stuff about mindfulness and meditation etc. That's all very well for mild pain, but when your pain is severe, it's about as useful as a chocolate fireguard.
I'm sorry that have to suffer and I empathise with I really do. You make some very good points buy I literally have exhausted all options ie changing Drs (always being told I'm not in the catchment area).
I am waiting to hear back from a pain clinic different team. I pray that they will help and do what they are literally paid to do. I'm well aware that Drs are worried about litigation from all angles but not listening to a Pain Consultant and changing perscriptions put them right in the firing line
I thank you for your kindness and words. I wish you all the best.
I'm so sorry I can't be of more help. I know exactly how it feels when you've literally opened every door and come up blank. It really wears you out mentally x.
I had a look at your bio and it's rather similar to mine. I'm 42, so also relatively young, and I first injured my back picking up my Daughter as a baby before being diagnosed with DDD.
I've always been very active and Health and fitness and going to the gym were a big part of my life too. It was definitely an outlet for me when I got stressed or anxious. I find living such a sedentary lifestyle soul crushing TBH. Being an 'adrenaline seeker' is part of who I am. I can't change that. And I feel like throwing something at the people who tell me to "learn a language" or "try colouring books". It's just not who I am and it holds no interest for me whatsoever. I'd rather be outside jumping over ditches or whatever.
Your Dr. should definitely be answerable to your Pain Consultant though. Have you put in a complaint through PALS? My GP won't so much as give me an aspirin without it going through Pain Management first. She's already admitted she's out of her depth, so she covers her own backside that way.
I really hope that the new Pain Clinician gives you the break you need (and deserve) and puts you on a regime that actually manages your pain sufficiently. It's obvious that you're being underdosed. It's becoming more and more common these days.
I'm moving on to Tapentadol this weekend Slow Release with a couple of Immediate Release thrown in. It's taken a year and 2 different clinics to get that change and get off Buprenorphine (causes me migraines). Am dreading it, because the dosage is too low, but I had to agree to it or be stuck on the Bupe forever.
Please let me know how you get on. Will be thinking of you xx.
P. S. Am guessing you've already tried a TENS machine?
There's no need to apologise your kind words mean another.
We have a lot in common I was complete gym fanatic nearly a competitive bodybuilder (weightlfter) it was my life, my total identity as person. I hurt my back getting my little boy out of the back of my car. I thought I was indestructible (like you do when younger) but soon got brought down a peg or two. I'm 45 on Monday, I don't have the lifestyle to match I really don't. Like yourself exercise is not just physical is very much mental and a stress reliever. I've been on all the cognitive courses to do with mindfulness and meditation.
As for a TENS Machine, didn't get on with it.
Again, thank you for your kind words. I will also be thinking of you xx
Darren in the UK you can request from the local health authority for a new Dr, when they give you a new surgery they try to keep you in your catchment area ,but if you explain you have tried to change within the area with no results then they "Will " put you in the next nearest catchment area and the surgery they give you will accept you Regardless! But you have to contact the area health authority first. I was told that by my own Dr who asked me why I wanted to leave, I explained why I asked
I have tried to change Drs Surgeries in my catchment area the problem I had was when I firstly called the alternate Surgery I spoke to the Manager of the Surgery and she told me I was like you say out of the catchment area, she apologised but told me she will try and help me and she would get back to me (famous last words). When she didn't get back to me I called that Surgery back I managed to speak to a receptionist. She apologised that the Manager wasn't there. I then asked her about my situation. To my absolute disbelief she said I'm looking at the board of people's names as we speak and we have patients from my village in their Surgery. I then explained the conversation I had with her Manager. I think a hole opened up and she dropped into it. On a serious note that's no mistake something has happened and possibly my name has been mentioned. I have never been a problem in my Surgery and always respected the Dr and patient relationship. But this is clearly wrong. Under GDPR Regs which have clearly been breached. They breached all confidentiality laws if they have discussed my medical history without my permission. Thank you for you message and advice which may come in very handy. I feel violated and discusted if communities are working in this manner.
If you have been discussed about without your prior agreement then it comes under "Breach of the Data protection act " as well as "Failure in the Duty of Care" both serious offences for those who should know better! I would honestly contact your local health authority and tell them of your suspicions at the same time! I think they would find an agreeable alternative Surgery for you ASAP rather than have a possible case against a Dr in their jurisdiction. Good luck Daz let me know how it goes.
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