I keep reading these horror stories about GP's being instructed to deny or decrease their use.
We all know the dangers associated with their use, which has often been arrived at as the last resort.
Telling someone that their last resort is being withdrawn, with no alternative to offer is truly despicable.
Jim
It's the world we're living in atm, I tell anyone who's suffering through this to pay to see their pain specialist of choice who'll then instruct the gp to prescribe. Also be assertive, don't just accept what the gp says, fight your corner vociferously!
IMO it's all about the money guided as being for our health.
My doctor kept increasing my morphine I'm now on 180mg a day and still in pain . Then she tells me the new guide lines are no more than 120mg a day and I have to drop down but no alternative. She then tells me she is concerned that I'm becoming addicted, can you believe it .
That is crazy Little mole. They can't cut below your "needs". You don't take it out of choice. Is there another doc at your practice?
I take 200mg daily plus Oramorph for breakthrough sometimes during the days, plus 10ml of Oramorph at bedtime. This is with additional pain meds. The last time that I saw my GP he was talking about increasing my Oramorph script so as to aid my comfort.
How can you be treated so differently? This is so wrong.
Rib
I take oramorth as well but my doctor limits me to 2× 5ml a day . I'm moving in January so changing surgeries .
Well my very best wishes for you and I hope that your new GP has a more enlightened attitude.
I am all for people reducing their pain medication once they have recovered from the need to take it, but to deny adequate pain relief to those who have not been physically cured and those with incurable disorders this is utterly barbaric.
Rib
We have no trouble at all getting the drugs either of us needs. David on Oxycontin and Oxynorm. Me on tramadol. Pharmacy is tied into computer though and although can order a couple of days before they run out they will NOT issue early. So have to go 2 weekly on allotted day for David.. If he hits a bad spot and needs extra Oxynorm then it is a visit to GP surgery and lots of explaining why. Too many bad spots unfortunately but no alternative than do the system here.
Our drugs and all treatment is paid for by the British government and unlikely they will change any rules of what we can have.
x
How does it work for you Pat ? Do you have free prescriptions as you would,d in Scotland or do you have to pay if the funding comes from Westminster ?
War happens after Brexit ? That was a typo but I will leave it in. Quite apposite.
Dee
We pay 10% of costs which for some meds is a few cents. and others several euros.
We can claim this back from UK.but as yet haven't.
Brexit will have no effect whatsoever. It is an agreement between participating countries as diverse as Canada Australia and many European countries.
And there are more Spanish expats living in UK than us over here. Politically it would be a disaster to any gov who tried to change it
x
Oh how I agree with you Jim, but has now become a case of fight for our treatment, even the cheapest options are now being denied in some cases. I dread to think what the future will be like especially for those of us who have no other way of obtaining treatment due to our finances not meeting our needs. i.e frozen benefits. But that's political too does not help me when I am in pain or anyone else to that matter. Try to have a Happy Christmas
I am on OxyContin 20mg slow release every 12 hours and I take oxynorm 5mg up to 4 times a day. These medications don't do what they used to do for my pain. I had a discussion with my GP who told me within the next 2-5 years we will be taken off them as they are proven not to work on long term pain and you need higher and higher doses to do the job they did when I first started taking them. He apologized to me and said "you've come to me for help with your pain, ive prescribed you what I thought was the best option to help with your pain levels and I've effectively turned you into an addict and now we have to deal with the consequences together of the morphine as it's not doing what it should be." I mentioned to him that I want to come off them but was worrying about withdrawal etc and what would we be replacing the opiates with. He said there are trials on other drugs at the moment so hopefully they will be approved by the time they aren't allowed to prescribe the opiates anymore. I asked about the MediPen (it's the non psychoactive part of the cannabis plant that is like an ecig) he said he'd never heard of it.. I have been looking into using cannabis (so far I have not gone down this road) he said that he can't tell me to buy this off the street as it's illegal in the U.K....... but the long pause after him saying that made me think he was sating go for it!! Anyway I have been in absolute agony and went to see my GP this week but had to see another Dr instead. He prescribed me liquid oxnorm 5mg on top of my normal oxys and said to take 5mls 4 times a day but stagger them with my 5mg pills. I wasn't that keen on adding another form of opiates cos I know it's gunna be hard to come off that now too. I think all the GPs need to be on the same page with the way they are prescribing these drugs to us. Xxx
Oh definitely agree they need to be consistent for sure x
I also heard about this Medipen which is working wonders for people with RSD/CRPS which I have. These people are in remission no pain and we the other patients must suffer while politics and other people who truly abuse meds ruin it for us. I'm from the U.S and its very bad here. Very strict with opiates where we sign pain management contracts ensuring our responsibility and allowing drug screens, monthly pill counts and many more rules. They will discharge patients without any notice or help if these rules are broken.
Unfortunately many overdoses occur, and pain doctors who overly prescribe just to gain profit from pain mills. It's very aggravating and intrusive but at the same time understandable to a point. You must be diagnosed with intractable pain or cancer for any controlled substance for pain. And god forbid u accident,y lose your medication once in the past seven years of management it will never be allowed. Our country is crazy as you already know from the new President. It's a big joke:-)) good luck
There is a big difference in Acute Pain and Chronic Pain. If anyone has even broken thier leg or after a doozy of a Surgery the patient may have excruciating acute pain where Opiods are necessary for short term use. Chronic life long pain is a whole different story. I could give a hoot about addiction. Naturally our physiology is asking for this. That's the reason of weaning off. Great! Because it's no longer needed. It's when acute pain patients get " hooked" on these opiods and "use them for the wrong reasons - to get high or ephoria. They are then no longer using these medications for pain. Chronic Intractable Pain on the other hand is serious. We have the right in my opinion to try to live at a reasonable amount of Pain Reduction. We all want to be productive members of society - I'm sure. If our Chronic Pain has taken ourability to work, we'll hell I'd like to be able to volunteer at something once - twice- a week. Anything. We are denied adequate Pain Relief that I can't even go get a few groceries. Hell if I had children at home I couldn't take care of them. Not a chance. Yet we are for the most part denied adequate Pain relief. Chronic Intractable Pain that does not alow for sleep and then the mental exhaustion enters the picture. Our moods can swing because we get no sleep,pray and pray the pain will leave us. Doesn't happen. I haven't heard one Truthful Chronic Intractable Pain Sufferer abuse medication if adequate is given. We want to be "with it " " with the ability to physically function" a not comlicated life that was not our choice. I'm tired of the opinions of others so worried about addiction. As if we are bums on the street looking for anything a drug addict will take. Heroin is a perfect example. Doctors send compliant Opiod users with Chronic Intractable Pain to Methadone Clinics for crying out loud! These Methadone Clinics for the most part deal with Heroin Addicts which is very sad. Then the Chronic Pain Patients get grouped in with the Heroin Addicts which would be anyones instinct as soon as one walked one of these clinics. Your then new Doctor if that would be the case automatically assume too much and now we get labled as one huge addiction problem! Horse Shit!
The recommended dose for Oxynorm is 10% of your daily Oxycontin dose.
There is a difference between being an addict and reaching your tolerance limit. Been a lot of discussion on this forum but the jury is stil out.
You can get canabidoi which is legal as it has all the nasties removed and just leaves the beneficial part of the cannabis plant. Someone will tell me the names.
Here where I live growing a few cannabis plants for home consumption isn't illegal. My David who no longer smokes has tried it as an infusion. Said it didn't affect him but I can confirm he giggled a lot and was pain free.
I have some seeds on order and intend to grow my own.
Buying the seeds in the UK isn't illegal - it's the growing of the plants which is. Maybe one day......
x
Get another doctor. I take them and they are safe if taken as prescribed.
hi jim they dont know what its like to have to live with cronic pain everyday and the other things that go with fibro
I am In immense pain today .. I spent 16 years addicted to opiates courtesy of my gp .. My word did I go through the realms of unwantedness when I detoxed but I am glad I did as now I have a much clearer head and mind .. Surprising just how much they affect you
Well if you are not bothered by your immense pain then seems to me that you didn't require Opiates in the first place 
Good for you!
Well said Jim boy 😁
You are so correct Jim I know here in the states our government is requiring a written script for hydrocodone with Tylenol because people fricking abuse it and lots of other prescription meds. I don't get "a buzz" from them just some relief from the pain
It's Human Physical Abuse. These Doctors should be held accountable and they are not. It's purposeful to the extent that their Human Eyes can tell them Intractable Pain is Real. The inhuman treatment should require each and every Doctor have a Phycological Evaluation. Physical abuse of any kind with holding back Pain Medications should be punishable by Law.
Well said. It is abuse.
Well I am absolutely furious as my GP flat out refuses to prescribe adequate pain relief and the Pain Clinic are saying the same. How can they??!! Live with me for one day and see what your stupid antipathy to opiates policy is doing to me. I am at the end of my tether. I have whole-body CRPS. This is my life. How dare they mar the quality of it, so that I cannot interact properly with my lovely family?! I don't abuse medicine or get a blooming high from it. It simply takes the pain away. I am in tears writing this. I have an appointment with my GP soon and if I have to, I will leave this surgery for another. I feel let down, judged and abandoned. Really.
It's really sad and so frustrating. I'm in the same boat
Wen2016, when you say CPRS, Who, what, why and how did they arrive to this diagnosis if you atr able to say. We have to fight back and refute with all our might there "profiling" and assumptions. Tell em to get out of the "Labeling business and be Doctors" Patient Profiling is both dangerous and harmful care. Volunteer a pee test every time you go in. And watch and wait that they don't screw up the test and that it is actually your pee ! Oh, yeah it happened to me because the "lipmus paper" was left in too long and apparently the colour indicated Oxycotin or Oxycoden - don't really know the difference but DO KNOW THAT I'VE NEVER BEEN PRESCRIBED THIS MESICATION AND I'M NOT SITTING ON MY SOFA MUMPING ON OXYCLEAN !......LAUNDRY DETERGENT ! It thankfully was taken off and correctEd. So looks like we also have to be extra vigilant that the medical staff are once again not making mistakes and we loose. Don't let it happen. I'll sit there and drink water until the cows come home ! Check my pee ,I want you to ! No drug abuse here and it's pretty pathetic that a mistake on the "testers" part could throw one out of a Pain Clinic! It's sometimes in my belief and opinion that if any Intractable Pain Conditions are caused by medical harm this is the route most likely to take place. If you want to be really serious about this, take a good friend if you can and record all accusations if untrue. They must provide "proof". So when I hand them my specimen - I'll wait. Period. Let them show me wth they think they've found? Also take your prescriptions with you and let whom ever would like to count them-count away! It will only make the accuser so humiliating at themselves bit any contradictions will be there to see by not just two parties but three. I was so sick to see that on my chart I had to defend myself and defend myself I did ! Wanna weed out your prescription abusers - do it accordingly. Mt hope for everone is that we all need no more or no less than what we require to get out of bed and try our best to be productive. To be considered a lazy slacker who has no integrity or ambitiousNess to be even on a volunteer basis a productive part of society even something small is all moat of us are asking for. I respect Pain Management Physician Professions as they hear our moans and groans and rhis isn't working and now this is worse on my left side blabla blabla - I'd probably want to knock someones block off at the end of the day because we don't know if their husbands, wives, kids etc. didn't already start gripping about something before they even came into their office. Yes we should all leave our private lives out of our Jobs, but Doctors are human too. We have to advocate hard for ourselves. I've presently a GP who doesn't believe in Arachnoiditis because either it's protecton his medical collegue or is truly ignorant of the condition. Come fully armed with any well documented factual evidence from Specialists and Hospitals with all listed references and it's pretty hard for anyone to argue the facts when you've tested positive or MRI Imaging says it all. Mind our mindfullness towards others and we should receive no less mindfulness and respect. I'm really sickened by the lack of empathy from many GPS. It's all too wrong for me !
Has anyone let their Doctors "read" our comments and replies? Don't know if that would be kosher or not? Administrative what do you think? No way really to Identify anyone. There is alot of Honesty here and top many Doctors are ignoring us. They can't semester to see that there is "no quality of life" .
Then be compassionate and euthanize me. This is a sick, to tough a road to travel.
We'll get there if we travel the road together. Don't give up x
Hidden you read my mind. I am sure there's no ethical concern if I take my main post in this thread here - which I intend to do - and put it right in front of my doctor at this upcoming appointment. My post, as far as I recall, contains no references to any members here. If it does, I will simply delete the member's name with a black marker. I'll let you all know how I get on. Another idea for those of you who are suffering terribly because of this dumb attitude to opiates. Should I receive no satisfactory outcome at the appointment, my son fully intends to take the matter further, by presenting our problem to our local politically representative, in this case, our MSP.
Way to go Wen2016 !
What ever it takes. I'm sick to death of True Chronic Intractable Pain Suffering Human Beings are ignored and not taken seriously and just to tip that off - use Pain Medications to get "stoned" or "Addicted" ! Enough is enough! Can't sleep because of PAIN. Can't eat because the PAIN makes me almost need to vomit. Can not do small errands because of Intractable PAIN that never stops. Have any one of these Doctors tried to put their feet in our shoes- if we can have the luxury to put shoes on in the first place.
Well let me tell you all.
I've put my feet in the Doctors Shoes and if I had to listen to a pile of patients moan and groan and cry, this doesn't work, that doesn't work, my PAIN is progressing to the pointment of no Daily Activities. Doctor my Pain is so bad, it's this or that. I've been able to picture myself saying; oh Stop your whining and complaining all day long, I'd probably want to haul off on someone. So my point here is if I can put my feet in their shoes why can't they put their feet in mine? It's not a life I can leave at 5:00 p.m. and then carry on to see my family, have dinner, go to a movie, sweet nothing.
So give me some bloody relief that is there in the name of HUMANITY so I too can be productive in some way. I'm not a stoner sitting getting high! I deserve a life just as you. May be without the big house and car but please let me live with at least some ability to help others as my personality is such. To do anything less for me is pure ignorant selfishness.
I repect you when you respect me.
Your message makes me feel like crying. It's so accurate and so truthful. I believe that there are MANY people suffering terribly, in the way that you and I are suffering. There's a German website for CRPS (Complex Regional Pain Syndrome) whose newsletter I subscribe to. Their motto is "Gemeinsam Stark!" which means Strong Together! I really do believe that all of us chronic pain sufferers need to stick together and share things that we have found helpful AND share ways in which we can successfully ADVOCATE for ourselves. The medical profession has turned its back on our pain - well, that's NOT good enough! Will let you all know how I get on tomorrow. I am really nervous about it, but somehow, the feeling that I might be able to bring back something helpful for all of us, gives me a bit of much-needed courage. Thank YOU all for being there for me <3 All the very best from blooming freezing Scotland, Wendy x
You go give them honest, accurate and assertive with no aggression. We have ever right in my very humble opinion to be heard and be treated with dignity and respect. We show and give them dignity, respect and honesty. The equal should surly not be hard to receive. I was thinking Wendy - are you using a mobile phone or something else? Could take a piece of tape and cover
healthunlocked.com
Unless any other member or admonition objects.
Show everthing from
Hellohellohello.
Don't mind at all.
Our Doctors must'nt stop us from living with just the little we have. A gentle reminder : Intractable Pain Never Stops.
If we had Cancer and were to die would we receive Pain Relief? Of course we would. Can Doctor not open their hearts to Intractable Pain. We have family and friends too. We would like to keep them but sometimes loose them. Not for lack of Love but for the cruelty of Physical Pain that keeps us apart.
Without Intractable Pain you have a choice to fake a phoney smile.
While with living with Intractable Pain we exhaust only to fake that smile we long to come naturally.
Wen2016
It's been a bit, more that a bit, well over a month.
I'm hoping that you will see this and we can get back on track as to how you've been getting along. Any Doctor listening yet.
Love to hear from you. If you've posted and I haven't not please accept my apologies in advance. I've been in a flare that's been beyond horrific and still have a new GP who doesn't "get it". He admits to not being able to read MRI's but he doesn't have too ! The diagnosis is on the bloody MRI'S. Have you run into this as well. In God's name all we want is to be able to function like human beings. I can't walk anymore than a block and I'm ready for the wheel chair! My flares isolate me. I can not do much at all. I pray to die in my sleep and the Lord take my soul to keep.
I'm so sorry that you're feeling so down. No progress yet, as I feel that I cannot change my doctor until my ESA benefit has been allowed. Sorry I haven't been around. I have been living in the Twilight Zone, terrible flares, viruses on top and sleeping up to 18 hours a day. How much my life has changed since I used to manage on 5 hours' sleep a day. So sorry, I haven't forgotten about you at all or the struggles that we share. Simply too ill to have been of help xx
Oh, I forgot to add that, for the sake of other members' privacy, I will not be disclosing to my doctor any information about the forum.
Admins, please let me know if these privacy measures are sufficient?
Many thanks, Wendy
And I forgot to add that there is little difference between Cancer Pain and Intractable Pain. It's horrendous for both. I don't wish anyone Death. As a Diagnosis, I sometimes wonder if I would welcome The Door of Death, the only one key in life in which we do not hold.
Brutal pain that is Insane, and understandably uncomprehendable.
My sanity I can keep, if by choice, you will ease my Physical Intractable Pain.
A compassionate Re - visit of What Intractable Pain Is. It's surly been discussed amongst Professor's and Medical Students alike who have watched the deterioration of loved ones with Desease that does not kill. Have some mercy, we are not sitting on Sofas getting stoned or high with the happy dancing music reaching the Sky.
This is called "distraction" at its best while hoping you will listen with an open heart and mind.
Don't fret over addiction, it's not a worry. We have to much to give to dare be so selfish.
Sorry Folks - I'm on a a Roll.
Hello, Hidden and everyone else on this thread. Well, I did not get the result I had hoped for with the doctor. He ran rough shod over me. I will now be changing practices and am going to see about that later today. Please forgive me for copying and pasting directly my update to friends on Facebook, but I am simply too exhausted to write it or even to think about it again. I want to say that, even though I have been failed this time, I am staying optimistic because I have to. We'll get there, despite the rather sad ending to my FB post.
From Facebook, written by me after a doctor's appointment on 24/03/17
"As some of you know, I have CRPS - Complex Regional Pain Syndrome. This means that I'm in serious pain 24/7, 365 days a year. My condition is not my fault and I would much rather NOT be disabled. On top of this, I have excrutiating back pain, which leaves me in tears every morning and unable to move. Went to the doctor today for some help. He made it very clear that he doubted the pain in my back and insinuated that I was simply seeking more pills. Well Doc, I trusted you, but it appears that I was wrong to do so. Before I developed CRPS, I was on....no pills at all! Guess what? That's the way I liked it. Nowadays, I have no option but to take pills for CRPS. Without medication, I would be curled up in bed in the foetal position, trying to ride out the pain as it crashes over me incessantly. I would not even be able to leave my bed. So Doc, you really think I want to be prescribed more pain relief for bloody recreational purposes? Hell mend you for making me feel so bad that I had to hold in the tears as I travelled back home on the bus."
Once again, I have pressed "Submit Reply" and it hasn't. I returned to this page to see this and I just don't have the energy to type all the things I said before. Just a couple of things - Hidden , I know that, like me, you are feeling pretty desperate at the moment. I had my doctor's appointment yesterday and promised that I would update everyone in this thread about it. It's not the most uplifting story, but the story does not end here! We have to keep sticking together, keep supporting each other. I'm not finished with the medical profession by a LONG shot!
Please excuse the copy and paste from the Facebook update to my friends. I am too tired to write it out again.
Written re. appointment 23rd March - copied and pasted from my own Facebook profile.
"As some of you know, I have CRPS - Complex Regional Pain Syndrome. This means that I'm in serious pain 24/7, 365 days a year. My condition is not my fault and I would much rather NOT be disabled. On top of this, I have excrutiating back pain, which leaves me in tears every morning and unable to move. Went to the doctor today for some help. He made it very clear that he doubted the pain in my back and insinuated that I was simply seeking more pills. Well Doc, I trusted you, but it appears that I was wrong to do so. Before I developed CRPS, I was on....no pills at all! Guess what? That's the way I liked it. Nowadays, I have no option but to take pills for CRPS. Without medication, I would be curled up in bed in the foetal position, trying to ride out the pain as it crashes over me incessantly. I would not even be able to leave my bed. So Doc, you really think I want to be prescribed more pain relief for bloody recreational purposes? Hell mend you for making me feel so bad that I had to hold in the tears as I travelled back home on the bus."
(However, as I said - I ain't done yet with the medics. They have to see what our pain is doing to us and I am NOT going to stop trying to make them understand. Chin up, Wendy haha!)
All the best to everyone experiencing chronic pain. Wendy x
Oh well, luckyjim - On with Plan B, the change of surgeries. All the best, Wendy x
Hi Hidden This is my 4th time trying to reply so I'll be brief haha. The Senior Consultant Anaesthetist at Ninewells Hospital in Dundee made my diagnosis. I have read screeds about CRPS and I know that she is correct. No -one at the surgery is accusing me of misusing my medication, as far as I'm aware. They just have the stupid old out-dated opinion that morphine is only for the dying. Like you, I only want sufficient meds to be able to take part in society. I visit my old workplace every Friday morning, to catch up with the residents' stories and to have a good chat, a hug and a laugh with them. I was their Activities Co-ordinator until I had to give up working because of my condition. The residents at the Care Home sometimes say to me "It's so good of you to carry on visiting us like this." I reply "I enjoy visiting you as much as you enjoy getting a visit from me. I would miss you all far too much to stay away!" And that is the truth. I LOVED that job. So, my opinion is that morphine is for those of us who want to LIVE with our pain, not only for those poor souls who are nearing the end of life. Sorry I couldn't reply more. Very painful hands. Best wishes, Wendy x
Dead on !!! I was going to say "no pun intended" but changed my mind! I think it's quite fitting.
hiya jim hope you are as well as you can be.do you know anything about muscle spams.my torso is like something is jumping or judering its terrible.when i breathe in its worse.i wondererd if it was costa condritis when i do anything with my arms its terrible.it pulls my body down.my muscles are so tight through my body and my legs feel like they will snap.cant get any respite been like this on and off for ages now.
Anti-inflammatories..NSAIDs
Coping with Duloxetine 
Alcohol usage with opiates ?
Has any one tried Cerezen treatment ?
Duloxitine 
