I am current sat in my bed feeling lost and in a so much pain.
I have been taking oral morphine for nearly 2 years now. There is a number of reasons why I have been on this but I have had 2 hip replacements (one that utterly failed and made it worse) and have chronic joint pain in most joints that are under investigation.
I have had a number of problems with getting my GP to actually help me make my life a little bit easier. He makes me ask for a supply every single week. I am mostly housebound so getting out or getting someone to go the pharmacy every week for 2 years has been a nightmare. It also left 0 room to put my prescription request in. If they prescribed me it late, i would try and put it in the next week on the same day I requested and it would be rejected. But that's fine, but they would never ever ring me to let me know it hadn't been sent over the pharmacy. So I would go the pharmacy just to be turned away in tears because I had come out for absolutely nothing and then I have to worry about what I am going to do if it's a weekend and I can't re send the request again. It's just been a absolute nightmare. But i am a person who hates confrontation so I put up with it.
I had my 6 month review in February only to be given a new GP who tried to prescribe me Co-codamol. I asumed that was to help control my pain better because it was getting to a point where I was just in bed all day. I never go alone because I just can't handle the walk nor the conversation, plus I forget what I actually need to say. So someone was with me this day and said, " wait. She's on morphine...is the co codamol on top of that?". The GP didn't say a word and turned to the computer and read my notes. And said "oh". Like what?! And the best thing was, he asked me why I was on medication and I had told him I had 2 hip replacements and have chronic joint pain and the words out of his mouth was "who told you you had two hip replacements?" Pretty sure I'd remember having two hip replacements in a year mate. And I had the awful recovery to prove it and the nice big scars. My boyfriend was ready to get me and leave.
So again, i deal with another 6 months of sending my prescription and it not getting sent over at least twice a month for so many different reasons. Twice the receptionist just forgot I put it in and never sent it over to the doctor.
I put my prescription request in on Wednesday to be picked up the next day (my week supply runs out) and I get a call saying he is refusing to prescribe it unless I come in and see him. Baring in mind I asked for an over the phone consultation because no one was available to bring me in. But the best part was that I was not going to be seen till Friday....Friday....the day after my morphine supply ran out. So I cried because I was freaking out. Freaking out about having to face the prospect of leaving the house by myself and seeing the doctor by myself. But most of all, he was going to let me go over 24 hours without morphine that I have taken for 2 years.
I explained and explained and no one gave a crap. I was told I had no other choice but to bring my self in on Friday, doesn't matter if I ran out or not. As soon as I put the phone down I got a call back straight away offering the over the phone consultation...don't know what changed in a second but I was so so greatful and thanked her for allowing that.
I think I'm getting a call from my usual GP but nope!! It's the one I saw ONE TIME who tried to give me co codamol. He asked me what was wrong. Told him I have to have a meds review. He asked what for. I told him. He asked how much I was on. He says, and I shit you not, "oh no that's too much. No more. I will give you 10mg of slow realise and then go from there. And send you to a pain clinic". I was happy about the pain clinic....they were supposed to send me months ago. But i said to him, i take 80mg a day liquid morphine and have done for 2 years. He says "that's too much. I'm putting you on 10mg twice a day". And that is it!! As soon as I put then phone down I sobbed. I tried so hard to tell him and tell him that it's not right. That's not the right dosage and he kept pushing me down.
Is this even allowed?! Suddenly dropping morphine dose like thay? I emailed the receptionist this morning trying to give the benefit of the doubt to the doctor that he heard my dosage wrong. I explained I am extremely worried as today is the day I run out of my liquid morphine so will take a HUGE drop to 10mg so suddenly. Plus it's the weekend so I won't be able to get nothing fixed till Monday if no one sorts it today.
THEY BLANKED ME.
So I am in so much god dam pain. I can't sleep because I am anxious about the withdrawals my body is going to go through because of a stupid thing this doctor has done because He does not agree with the other doctors decision to give me that dose. Who questions another GP's decisions, who works in the same place?!
I am sorry for the story but I really need some advice. What can I do asap? Can i call 111 and explain to them my problem in the hopes that they will prescribe me some liquid to get me over the weekend? I just feel so lost and let down by this gp.
Thank you in advance for any help you my give. And please don't leave any judgement about the use of morphine. I'm not stupid. I know it's not good to be on BUT if that's what helps me get out of bed and not be in a tone of pain all day then I am more than happy to have it in my body. If I had the choice to be pain free with 2 great hips and great joints that don't feel 100 years old and not have to take any pain killers I would. Sign me up!
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YoungAndPainful
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Yes, being in pain is terrible. I think if you phone 111 they could make you an appointment anytime and they should supply you with an emergency prescription. Your G.P should not drop the amount you have so drastically. Could you complain to the practice manager or try and get in at a different surgery and say why. I am on many different pain meds cos I have lots of different conditions. You can pm me if you want to. It's a disgrace. Please take care. Love and hugs Lynne xxxx
This has made me feel better in that I am right and he should not have dropped it so drastically and literally suddenly. It's so wrong. And then to ignore me. I was trying to find info on switching from liquid to slow and if it is the same dose. I was telling myself that there is no way a doctor would do this knowingly but I told him over and over that 10mg is not going to do anything for my pain after being on 80mg...It's just common sense.
I am doing everything I can in trying to stop the heavy withdrawals and the complete agonizing pain. I don't want to go to A&E. I had half a bottle left yesturday. I have took the 10mg and took little bits of the liquid through out the day taking the odd co codamol inbetween to. It's DISGUSTING that I've been left like this. Everytime I have delt with them they make me feel like a druggy off the street when I have never ever ever abused the medication or asked for more than I should. I Shouldn't be treated like this.
I have about 2x 5ml liquid left in my bottle so I'm saving it for tomorrow morning so I can actually get up unlike today. My whole body is just hurting.
Do you honestly think 111 will sort it for me? I'm worried that they will say there is nothing they can do...
Again thank you so much for the help. I will PM you as soon as soon as I sort this out xx
If you are in a lot pain plus withdrawing you should go to your nearest A&E. 111 will make an appointment somewhere and the waiting and all. The withdrawals is a medical emergency in itself. Wish you all the best ❤️
Like you I take a lot of pain meds you said your doctor took you off liquid morphine at 80 mg a day and put you on 10 mg twice a day I stopped using liquid morphine and continued taking DHC slow release twice a day along with pregabalin plus others but without firing up my computer I cannot list I consider the slow release DHC to be my main form of pain management, is the co codamol slow release 10 mg total or 10 mg per hour? which would be 240 mg per day some drugs mark the packaging in 2 ways either the total or per hour, one of the reasons your doctor has tried reducing your medication is the government has said that all doctors have to reduce the amount of pain medication along with lowering the type of medication they give you I have been taking pain management medication since 1976 when I was involved in a accident in the army and had my back broke in 4 places along with damage to my neck and straining all of my joints from feet to neck. I was sent to a pain management clinic 7 years ago and at the appointment the doctor was very positive and told me that there are lots of new ways of helping but as I was about to return to the Caribbean for 6 months the doctor said he will a appointment for when I get back the when I returned to the pain management clinic it was after I had accepted that I am transgender and was living full time as female my appointment was due at 13.00hrs and I got there early for some reason I did not get to see the doctor until 18.00hrs and the last appointment even though I should have been before everyone else, when I went in and saw the doctor he looked at me up and down like you would look at your shoe after stepping in dog poo and the only thing he said was there is nothing I can do for you he then sat there dictating into his tape recorder and kept saying Mr smith even though my notes were marked as Miss and I was dressed as female, when I went out the nurse came over to me and apologized for the way the doctor had been she said that no one should be treated the way I had but there was nothing I could do about it he was the doctor and it was what treatment he decided I needed, (sorry for getting off topic) I think you should give the new meds a go for a week at least there is one thing my doctor told me that if the pain is getting past the pain meds is to take paracetamol along side what you normally take as paracetamol increases the effect of what other pain meds do and I can admit he was correct now if my normal meds are not working as good as I would like I take the paracetamol and just try to ignore the pain which helps as long as I am doing something that I have to concentrate on then the pain gets put to the back of my thinking if you can try giving it a try when I am in bed I never try to get to sleep as I know that all I will manage is to concentrate on the pain I just lie there and read until I fall asleep.
Good luck in finding something that works for you.
I've put a general reply and update at the bottom. I just dont have the energy to type up the same update to everyone tonight but please know I appreciate your reply and it really did save me from getting worse. Thank you so so so much for your response <3
Unfortunately I don’t have any suggestions apart from what others have said. I really feel for you and do hope you get the help you need.
Oh god it sounds like you have a terrible Drs surgery, I'd seriously try and look for a different one if you have that option. Or write a letter of complaint although if you have had a couple of bad gps there the problem could be systemic...even then I'd still write a letter to the practice manager complaining and depending on the reply take it a step further n make a complaint about the surgery to whoever you complain to (sorry my mind gone blank) think it pals for hospitals not sure about surgerys...sure Google will know who you write to but I'd give the surgery the option of sorting this out for you first.
Also if I were you and your withdrawal symptoms get bad I'd go to a&e or phone 111 hopefully they will give you medication to withdraw correctly and hopefully give your gp a bollocking .....maybe an angry consultant letter would shake them up a bit to start acting responsibly
I had to withdraw by a tiny amount every 2 weeks when I went on to slow release morphine (I was on tramadol not liquid morphine tho) and my gp gives me a months supply at a time as she knows it a struggle for me getting to the pharmacy.
Hopefully your pain clinic referral will go well, some have a medication review so hopefully that dr who does that will be more helpful.
Your Drs were very rude to you, questioning you on having 2 hip replacements 😳 Like you'd not know that!
Oooh I'm angry for you 😡
Wishing you all the best luck in getting this resolved and finding some relief
I've put a general reply and update at the bottom. I just dont have the energy to type up the same update to everyone tonight but please know I appreciate your reply and it really did save me from getting worse. Thank you so so so much for your response <3
Hello, if you call 111 you may end up in hospital on a medical decisions unit. You are correct morphine like steroids should be reduced gradually, this happened to me . Similar attitude from Gp, mine was my inhalers & I ended up in hospital by ambulance. I made an official complaint which is still being investigated. I can't walk without pain to spite painkillers, so sympathise with those who have severe pain. Do question the outcome, I have been to a pain clinic it is mainly talk for those who can't control their own pain. But many find it helpful to share pain experience with others in small groups. Healthwatch can sometimes help with things like prescription blips. Or just contact PALS and ask why this is happening to you. If you have had hip replacements you should not be in pain from that. I have multi joint pains so understand your feelings to some degree. I also have gout which can flare without warning and GP appointments are not easy to get even for those with mental health issues. Last time I went to a walk in it was a long wait and they were dismissive as if I should see my GP not them. So its a no win for those of us who have chronic illness and symptoms.I wish you every best wish in finding a solution. My thoughts are with you.
I've put a general reply and update at the bottom. I just dont have the energy to type up the same update to everyone tonight but please know I appreciate your reply and it really did save me from getting worse. Thank you so so so much for your response <3
Others have given you very good replies, so I won't add to that, but I would like to say just a little bit about pain relief.
The opioids which includes morphine, where never meant to be used for every day things, they were supposed to be used for end of life situations. However, many doctors jumped on the opioid band wagon and it became the go to drug for pain relief. They have now realised that they have done many patients, including yourself, a disservice.
Many people on opioid medication are actually still in pain. So they increase the doses thinking that they just need more. Unfortunately not everyone gets pain relief from opioids, and in many cases it actually increases the amount of pain. So one of the first things that pain clinics look at is this, and start to take patients off the opioids. The recommendation in starting opioids for long term pain now is try at the lowest level for a week and if that works keep it there. If it doesn't, don't increase the dose to a level where it does, it isn't getting rid of the pain, it isn't the right drug to use.
So in a way your GP is doing the right thing, but he is going about it the wrong way. It doesn't sound like he has got a good treatment plan going, and it certainly wasn't co-produced with you. Getting your drugs right is only going to work if you are part of the team making the decisions.
So you have two problems, not one. The first which others have given good advice for is the immediate problem of what to do without enough morphine right now. I will just add that paracetamol can actually be very useful but it works best if you take it all the time, that is four times a day. but remember that co-codamol has paracetamol in it so don't take both.
Then you need to think about getting the right drugs at the right dose for you. Most likely that is going to be helped by a pain clinic, so I am wondering about having a meeting with the practice manager to tell them how horrible this has been for you, and make sure you have your boyfriend with you, and that you want to get the right combination of drugs for you, but feel that the pain clinic should be the ones to be doing it, so could they please go back to what it was until the experts at the pain clinic deal with it. That way you might also get a faster referral to the clinic.
In the mean time, do you know about the pain toolkit? There might be some stuff there that will help you get through the next few days until this is sorted. paintoolkit.org
I've put a general reply and update at the bottom. I just dont have the energy to type up the same update to everyone tonight but please know I appreciate your reply and it really did save me from getting worse. Thank you so so so much for your response <3
I appreciate that you're repeating things you've read in reasonable publications, and even in journal articles, but unfortunately much of it is incorrect. Not your fault! The original sources are misinterpreted, opaque and/or written to direct thinking in a certain way, although opinions differ on whether this is due to incompetence or on purpose.
Most (or maybe all) of the above info is coming from the US/Canada. I've been keeping a close eye on the opioid "epidemic" in North America, as I lived in both Canada and the US for some time. The US has a long history of "drug panics", which are almost always associated with marginalised groups of people. Exaggerated stories are bandied about in the media, politicians talk tough, and the overall response has almost always been incredibly punitive, damaging to the marginalised group, and startlingly ineffective at cutting down on drug supplies, drug use, addiction, the crime that goes with it, overdoses, health problems, etc. It does give politicians and law enforcement
Thank you for your reply waylay. Just to be clear, I am in the UK and was responding to someone in the UK about their particular situation in the UK. I was not commenting on the America medico-political situation. Also I am a researcher myself, so I have not read 'reasonable publications' as you call them, but have read the actual research underlying the situation. I am currently doing a PhD with pain as part of the research.
I realise you're in the UK (me too), but most of the research, statistics, "common knowledge", propaganda and hysteria about prescription opioids is American, and is now being imported here, and is being used by some without critical examination.
Glad you're doing a PhD that involves pain! We need more pain experts!
Im also a scientific researcher! Woo! I did a B.Sc. and M.Sc. in Geophysics and Geosystems, then worked for a US Department of Defense contractor for 5.5 years as a research seismologist, exploring ways to detect nuclear blasts among the noise of earthquakes, mining blasts, landslides, etc. I came back to the UK to do my PhD, but unfortunately I was asked to leave 2.5 years in. I had injured my back, had surgery which failed, developed chronic pain (and other issues), and had to spend a year in rehab to be able to walk again.
When I returned, my lab wasn't willing to make the legally required reasonable adjustments for me. They already had the funding I had brought with me, healthy students are a dime a dozen (Cambridge), and I would have needed to go 3/4 time, which would have wrecked the lab's perfect record of 4 year PhDs. They also assumed that because they couldn't see my disability, I must be shirking. (Oh yeah. 2 degrees, 13 papers, SURGERY, but I was lazy? Honestly.) I wish I'd taken action now, but at the time I was so shocked and betrayed that I just left.)
I grew up with a Dad in pharmokinetics, and worked at his company for 2 summers, so I already had a modicum of knowledge about meds. I managed to go back to work part-time for 2.5 years in the Geography Department, and wrote 2 chapters in a book on epidemics and displaced people. It was awesome! Wrecked me though.
So I've spent the past 5 years researching pain, disability, etc., and helping people with benefits issues.
Why did I write all that? Screw it. Skip if you want. Tramadol day.
Co-codamol is an opioid medication and is a good way of moving someone from high doses of morphine - an acute or palliative care medication. Sadly being on that dose of morphine daily has given you two problems - pain and addiction. Your medication issues do not stem from the different opioid regime instigated by your current doctor but from being kept on that high dose of morphine for so long. A good pain clinic will deal with your addiction and pain
If your pain is extremely severe, 111, A & E or, indeed, 999 might be options that move you up the pain clinic list faster.
Well thank you for your opinion but if you are referring to addiction in the sense that my body needs it to help me live my life then sure. But i don't CRAVE a dose. I don't go out my way to get more than I should. I don't dose myself with even an inch more than I should.
And as someone who has been taking morphine for a while, take it from me, I'm not even remotely "high". It might be a shocker but I don't go round my house completely off my face. I am doing a masters at the minute so that would be pretty difficult if I was high. Plus I learnt how to drive and passed my driving test with flying colours whilst taking my medication. I also managed to complete my PGCE with an "outstanding" teaching status whilst taking it to. I'm not impeared by it. I'm also not ruining my life with an "addiction".
I think a lot of people will agree that once you are on something like this for a while, you don't get a high feeling at all. It just helps numbing a % of the pain.
I feel the term addiction needs to be adjusted for people like me. And I do get insulted by that because I take what is required and never more. I don't sleep the day away. I am productive even though the huge amounts of discomfort I am in.
I appreciate your opinion and we all have a different one but I don't have an "addiction". My body has a need for something that wouldn't be needed if it wasn't for the shitty body I was given.
I do have pain though, can't argue with that one 😂 x
There's a big difference between physical dependence and addiction.
Dependence: the body is used to having a certain level of substance X present. When X's dose is reduced or X is completely removed, the body reacts with withdrawal symptoms. I get this when I've had to take max dose tramadol for multiple days in a row. I get itchy, I sweat, and I often get a headache. It's annoying, but it fades in a day or 2. Not a big deal. Can also involve increasing tolerance, but not always. A large proportion of chronic pain patients never feel the high, or do so only during the first few days/weeks.
Addiction: (often involves physical dependence, but not always). Psychological dependence on a substance (or action such as gambling), usually because the substance relieves emotional distress or allows an escape from a reality that is unpleasant to the addict. Involves behavioral symptoms, with the most notable one being that an addict will continue use of the substance in spite of clear harmful effects on the individual, their family, etc. Often involves inebriation, a high, or euphoria.
Many meds cause dependence, and some can have horrendous withdrawal syndromes (Venlafaxine and corticosteroids, for example), but nobody gets addicted to V or steroids.
They can occur together or separately. Various studies in the US have found that CPP on long-term opioids get addicted 1-8% of the time. Most estimates are at the lower end of that range.
Why do you say that 80mg is far too much? The ability to metabolise opioids/opiates varies enormously (by up to 15x!) so there's no way to know how much an individual patient will need. There are many other issues involved as well.
Great explanation. Liver enzymes, near the bottom, are particularly important.
I say it from my own experience with Oramorph, it's great for short term use but the body builds us a resistance to it.
I was on 80mg Oramorph along with 8 tramadol, 4 co-codamol and 8 gabapentin a day.
Did this for years, and yes it worked to take the edge of the pain. But what I found was it was effecting quite badly physically and mentally. I was looking my eye sight as well. So great incentive to reduce the amount I was taking.
To cut a long story short I've cut back to 20mg morphine 4 tramadol and use the Co-codamol and gabapentin as floaters.
If I take to much co-codamol the ends of my fingers start to rot and if I take too much gabapentin I feel giddy /disorientated a few days later.
I'm in a lot of pain and need to take more than I do, but the side effects help balance out how I deal with it. Giving myself choice and occasional way out helps a lot.
The thing is what can you take on the days when your in so much pain you have to curl up in a corner crying and pulling your hair out. If you've maxed out the painkillers what can you take.
You do need to see a pain management specialist, in the meantime see a different doctor. (It's was irresponsible of your doctor to reduce your medication by so much so quickly.)
I think you meant to reply to the OP, not me. I completely agree that it was irresponsible of the doctor to reduce their meds so abruptly, and without listening to their concerns!
I was taken from oramorph to sevredol which is tablet form. It is amazing does the job just as good if not better than oramorph neve thought I'd say that, I had a fall from a tree a few years back 50ft smashed my pelvis an broke my foot very lucky not to be dead or paraplegic doc said I'd suffer in later life and was right without sevredol which I was for 36hours thanks to my surgery having no docs to sign script, awful going through withdrawal so harrowing. My heart aches for you I know exactly what you're going through. Demand you see a consultant a doc that drops the dose like that is a quack, ask for sevredol if they want you to change it has the same effect as oramorph with that added euphoria which is such a lovely feeling knowi g your pain is leavi g very soon, good luck. Let me know how you get on.
Hi this is awful. I presume you are in the UK? Most surgeries allow you to order online now as long as they have proof of id. Once you give them this then online it is. Also many now deliver free from the pharmacy for those who are unable to pick them up. x
I would make a complaint and call 111 for advice. it’s disgusting to be treated this way, you need someone in your side. someone official. if they are reducing your morphine it should be done slowly. My doctors did this to me when I came off tramadol the withdrawal is savage.
I take 80mg a day that dose works for me.
Now, I have had similar problems with my GP.hates that I’m on morphine. I go to the pain clinic monthly, my pain counsellor says the government are trying to reduce the amount of morphine being taken, however she says this is for people who are taking over 120mg daily and I shouldn’t worry. my GP is happy ish... as long as it’s working. I have to say morphine changed my life! before taking it 2 years ago I didn’t move out of the house/bed for 10 years. and felt like killing myself so in my case it saved me don’t get me wrong I can’t run or jump and still have days where I can’t get out of bed. I hope you get this sorted out a care plan is necessary what are they gonna give you instead? good luck so sorry your dealing with this heartless GP!!
Maybe they have started you on the lowest dose to see how you get on I honestly couldn't say . I do know that slow release OxyContin is a much more powerful form than oromorph the liquid form of morphine . Not sure but I think it's 3 to 1 I have spoken to the pharmacist at my GP practice at length about my own meds . I take 100mg of OxyContin twice daily and liquid morphine upto 4 times a day for breakthrough pain . Maybe they will increase your slow release when they know how your getting on with it if not you should insist they have no right leaving you in pain . All the best keep your chin up and don't give up if they do not look after you and your pain complain about the little bastxxx and insist
Hi all, i just wanted to say a huge thank you to everyone who messaged me back here. Each and everyone of you had something encouraging and helpful to say and it really got me through the night and morning.
After such a awful night last night, i woke feeling light headed and my whole body shaking and just sick. Not to mention in so much pain. It made me realise how much the pain killer does help me get by in my day to day life.
As soon as I read the rest of the messages i called 111 and told them what had happened. I broke down in tears trying to explain what had happened. I was mad and upset. But the woman on the line was so so understanding and helped me with what I needed.
I was told that they would send my files to a local pharmacy and I just needed to call and give them permission to access them. So I called and I was told they didn't do pain killers....the pharmacy didn't do pain killers....Right. So he told me to call back 111. So again, i called them back and they were so co fussed by this and put me on hold. They had told the pharmacy that they had to arrange a out of hours service to call me. So I waited not long till I got the call from THE nicest GP I have ever spoke to. So bloody understanding!!! He listened to everything I had to say. It was a stark difference to what I've had for 2 years.
He did say that it was wrong what the gp had done to me and what he did made 0 sense. If he was switching me over to slow realise it should have been 40mg twice a day. But he passed it off as "He must have heared your dose wrong" but even then It's on my files. He agreed. I think he was just trying to stick up for a fellow GP.
He gave me two bottles to get me over till my GP was sorted which I really appreciated. I have never felt so relieved knowing I was not going to be in so much pain in 2 hours. He didn't want to touch my slow realise so gave me liquid.
He said I need to speak to my gp again and try and explain again. But you know what? I've had enough tbh! I've had 2 years of the crap and this was extremely disgusting, irresponsible And neglectful! I will be 100% putting in a complaint because I am not buying that he didn't know what dosage I was taking when I told him exactly 5 times. And it's on my records. Its been the same dose perscribed every week for 2 years. He just didn't give a shit and it's not the first time he's been seen as neglegent according to a family member.
I am terrified to call up the gp because I know I'm going to be spoken to like shit and passed off again. He has this "I know everything and you know nothing" attitude...It makes me anxious thinking about it. I don't even know what to say.
I will be putting the complaint in. I will also be looking for a new GP who will HELP me like a GP should. I am doing my best to push myself to specialist appointments etc so that I can get my body to a point where I can go and do what I am qualified for and have worked hard for, teaching. I just need someone to be on my side for once and for something to go right.
Also to anyone who has messaged about their experiences with morphine, i agree completely that it may not be right for some but I don't and have never abuse it or took a mg over what i am supposed to and it just the right amount to get me out of bed 80% of the time. So I honestly don't care about the effects. It's that or not live. Id rather live my life.
I have another question! I have a new specialist who is a rheumatologist, I've met him once so far but seemed super nice, do specialists prescribe? Or is it just gps?
Again thank you so much. I am looking forward to a 70% decrease in my pain and a god dam lovely sleep tonight! Xx
Good for you, I'm the same as you I could and didn’t get out of bed for 5 years because of the pain the morphine changed my life so don’t care about the side effects/dependence I’m glad you are complaining no one should have their meds taken from them without tapering and given something else for the pain. Good luck finding a caring GP they are hard to come by. Xxx
Also, someone mentioned the hip replacements. I was told that when you get a hip replacement, it could do one of 3 things. 1. It makes it so much better. 2. It could not make a difference 3. It makes it worse.
I've landed between 2 & 3 with my left hip. The first one is so freaking good. No pain at all in that hip. But the second one is awful....Just another 20 years till it's done again 🙄 my luck really. Did i mention I am only 26?
I suffered badly with my knees before the replacements but I was told it's just pain from the hip and once they were done it would be fine. Boy were they wrong. I can't put weight on them 40% of the time. It's like they give in and the pain is agonising. Some times it helps if i walk with my knees bent.... its strange. And then after my hip replacement all my other joints rapidly went down hill. My shoulders grind and pop. My elbows crack and have huge shooting pains randomly. My wrists crack and send electric shock feelings up and down my arm. I then suffer with with fingers. More shooting pains and feels like I've been holding onto something tightly for hours. I have to be lifted out of bed of the morning because my back pain when I wake up stops me from wanting to breathe because it hurts too much to even move my lungs. I have "trapped nerve" feelings in my neck 3 days out the week. My ankles swell and crack. Can barley walk on then for No more than 2 minutes on a good day. And now, recently, my left thumb spasms every 10-20 minutes causing me to drop things and my Jaw has suddenly decided that it wants to crack when I open my mouth a little wide.
I am basically falling apart. My body is useless and it's hard to live with at 26. It may sound like nothing to some with worse things going on but to me everything came out of no where at 21 years old.
it sounds to me as though you have rheumatoid arthritis or something similar. I think you need to get back to the specialist , through a new doctor. I'm sure there are specific treatments for a condition like that. And by the way i get my prescrips delivered. If i run out of something i telephone the surgery , they send it to the pharmacy and it is delivered the same day . You need to find a practice which will do that for you.
God bless you my dear , there is light at the end of the tunnel . You've been given a lot if good advice , and you will continue to get it here . KT
Hi again , don't feel you have to reply to everyone individually you did well to reply at all. You sound like you have whats often called JUvenile arthritis and many young ones with that have to use wheelchairs. Strange that one hip worked fine but it is not always the perfect answer as you have found with your other hip. I know a few who have had knee replacements too that have not resolved their problem. Some people have had to have artificial joints but even that has its own issues but no pain I beleive. It is not easy to know what it is like unless you have the same. You have given us a good description of the worst scenario and sadly I can only offer empathic support. The thought of years like that must be most daunting, as there are no magic cures are there???? Just a suggestion a group called Medinova are researching five different painkillers in our region at the moment. I am sure you would be willing to try anything for releive so might be worth a try , they can be found on line to make an enquiry. Will be thinking of you and hoping your pain lessen if only for a day at a time any lull gives a glimmer of hope remember no need to reply.
I do sympathise because i have chronic pain from various causes . The doctor doesnt really give me anything to touch it. Last summer i discovered cbd oil and i dont know what I'd do without it now . I wish i'd had it years ago when i had migraine . I started on drops , on a low dose , you build up gradually but within a month or so. Now i can get a mint flavour spray and as its expensive i buy when its on offer . It lasts quite a long time . I get it from holland and barratt , but you can get it from Amazon and other places . Holland and Barratt can advise you on dosage etc . I am happy with it because its natural , i have a lot if strong meds for heart , sleeping etc already.
I do hope this will help you . Other than changing you sadistic doctor , i do believe this is worth trying . God bless you , and gentle hugs . KT
Oh I’m so glad you took action and got some help for now with your medication
I’m sorry you are so young and going through this much pain and all this added stress on top. Well done on all your accomplishments. Hope you feel proud of yourself..... you should
Remember your strengths and that It’s not you who’s in the wrong when you make that phone call
Just to add I’ve seen specialists at hospitals from various departments and yes they prescribe medication and because they are specialists in that field your gp can’t argue with that
I have had my morphine patches reduced as the powers that be said if the patches were equivalent to over 120 of oramorph then it was too high, so as mine were equivalent to 180 of oramorph my patches have been lowered but I can have the oramorph on top of that. My Dr did say that I’ve been fine on the higher dose but he has to go by the medical recommendations, I’m quite lucky as since this reduction he phones me to make sure I’m ok, problem I have now is I’m having to take extra oramorph.
Goodness, you have been going through it! I’m glad the GP through 111 was good & sorted your pain relief out - to be honest, we wouldn’t leave our pets like this, so why do they do it to people??
I’m also on daily morphine - 30mg slow release in the morning, 20mg slow release in the evening & oramorph - 5mls (10mg) four times a day (I take other meds with this as well). I have fibromyalgia, prolapsed discs in lower spine, Ehlers Danlos hypermobility & a couple of other things.
I would say that the rheumatologist should be your best friend! They can prescribe medications and also look at a range of conditions.... if your joints are popping and cracking, has anyone ever mentioned Ehlers Danlos hypermobility? It’s where our connective tissue isn’t ‘normal’ and joints are able to partially/fully dislocate... my knees often slip out when I walk!
Have you thought of wearing knee supports to help you when walking? Amazon do a range of supports, if you’re unable to get any from rheumatology.
As for your GPs, if you are able to see a decent one at your current practice, fair enough. But if not, you are more than entitled to change practices. I had to change practices earlier this year & it’s the best thing I’ve ever done!
Not sure if you are aware but slow release does not work that way why would a GP give you differing doses 30mmgand 20mg . With slow release you are supposed to keep the same levels in your blood over a twelve hour period how can you do that with two differing doses . Oh I have been suffering since 86 been to hell and back seen many docs been through many meds but have had opioids and OxyContin explained to me many many times .
My husband recently died of cancer he was not fed much morphine before he died - There are organisations who want to bring in assisted suicide - because 50 people last year did not want yo live - I believe that you do not hive governments this powerful control over our life and death through legislation - give them an inch they take a mile - To the point everyone knows in a painful illness where morphine is the answer like cancer - At the end it is the morphine that has killed them - maybe your doctor has this in mind - or maybe they are worried you have been on it too long - Surely the GP can find you a none addictive pain resolver - Although similar to yourself - I have the same devastating pain during the night every night each time I wake up from sleep - I do wonder how long I can put up with it - dix years now and still no diagnosis - I wish you luck in finding a solution - Have you thought of asking your GP for medical cannabis?
Very few chronic pain patients develop addictions when on long-term opioids. Estimates are 1-8%, with almost all of them clustering around 1. Physical dependence is not addiction.
Unfortunately most of us have tried all the non-opioid meds and non-med pain relievers, usually before starting opioids. Many of us use them along with our opioids. Some us can't take some of the other meds (I can't take NSAIDs like ibuprofen or paracetamol anymore - they caused too much damage).
Unfortunately, for many chronic pain patients, in order to have any quality of life we have to take opioids. Research continues, though...
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Morphine withdrawal symptoms?
No Diagnosis. crap painkillers and doctors that won't listen
More pain than I can bear.
