For over 20yrs I’ve been on opiates, (at that time I knew nothing about painkillers). I’m under so many consultants but none of the was checking what medication I was on. Now, I’m not allowed any and i am climbing the walls screaming with pain (esp my back it’s crumbing), and even the pain management team will not try nothing due to other health issues. My L5,L4, S1 are deteriorating, and can’t give me nothing. I don’t know what to do because how much pain can I take?
I’m scared that I will take painkillers or something else. I also suffer from APS, Lupus, Underactive thyroid, RSD (now known as Chronic pain).. Osteoporosis. I have many allergies including NSAIDS.
PLEASE HELP !!!!!!
Written by
Teanna
To view profiles and participate in discussions please or .
I'm so sorry you are in so much pain. Your Dr needs to help you. Maybe a tens machine would be great, hit water bottle, heat pads. I couldn't stop crying on Tuesday night as I was in so much pain and felt I couldn't cope with it anymore. I'm back to being glass half full again. I feel better emotionally now I've finally found a consultant who listens!! Take care Lynne
I’ve tried heat pads and I’ve tried my GP, no one wants to help, which means I’m climbing the walls 24/7. They tell me to go to my GP but she it’s up to the hospital. I’m suffering because none of my consultants or GP wants to help me. I don’t know what to do.
I rest feel for you . Could you go to pals to complain? I've read of many people going to them , the result being they get a consultant who actually listens and puts lots of things in place for you. Sending lots of healing hugs your way Lynne 🤗🤗🤗🤗
There is a pals office at the hospital I go to but they did not help the first time around. I was in a RTA in an ambulance, it was the drivers fault, I went to pals, but they did not like the fact that I was seriously hurt. In the end no got a solicitor, I won the case and they wanted to settle out of court, the day before the pay was due, they went into liquidation, but if pals dealt with it straight away I could have won and paid. But the accident made my back worse.
PALS are limited in what they can do and certainly can't deal with litigation issues.
You can ask for a referral to see aspecialist in another area. Obviously given that you have been given too many opiates in the past and your damage doctors are going to be cautious about what they can prescribe for you. You could make an appointment to see a pharmacist. They cannot prescribe medicines but they could advise you re alternatives.
Perhaps you could make another appointment with your doctor and take someone with you. Perhaps you could ask them to suggest how you can manage in the circumstances and what alternatives there are available to you. If they won't help then ask for a referral to someone else who can help you.
Make a note of what you want to achieve and what is said. If the doctor refuse to help out at all then you can write a letter of complaint to the Doctor's Practice or to the local Community Health Service. (Your MP may be able to help if you have no success - sounds daft but they often know who to go to for local matters, although they can't intervene medically.)
It is clear that you need help and support and it isn't acceptable for a doctor to simply take you off opiates and leave you with nothing else if you have been on them for a long time.
Long term pain is horrible and you clearly need someone to take charge of what it happenging.
My GP decided to put me on paracetamol after being on MST 130mg twice daily, Severdol -2 every 4hrs, 2 paracetamol 2 every 4hrs. Fentanyl patches 72hrly. 0.5 x 3 am, and 6mg x3 at night closepam (sorry for the spelling). Miritine 1 at night.
Riveroxoban daily. Fusemide am, Zopiclone at night, Levoroxine 150mg am. Rantidine in the morning.
Sorry for the spelling as I have no old lists. Then I had all the creams for the lupus, I have so many, the OT is sorting out the UV for my windows as I get burnt by the rays in winter. I’ve probably left some meds out but to stop them, and being a chronic pain sufferer, and with all my illnesses (12 in all), the pain is horrific, I just can’t cope. My GP has not got an appointment for 3weeks, so I was told to ring tomorrow and get her to call me, she has to do something.
Sorry about me moaning, there are people worse of than me, but I can’t cope. Fingers cross I’ll get an answer tomorrow.
Thank you all for the advice, at least I have someone to talk to as I’m so scared.
Hi Teanna. I too am sorry to hear about this horrible turn of events for you! It makes me so mad!!! Through no fault of their own, patients like yourself who 'need' pain medication to live/survive are not getting it. You have been taking opiates for a long time and suddenly you are cut off, right? That is so incredibly dangerous to you both physically and emotionally. Drs. are backed against a wall with the medical board or AMA regarding prescribing certain scheduled narcotics; Drs. don't want to lose their license(s.) You need the proper treatment and you needed it "yesterday!" Please keep us posted as to your accomplishments. My best to you Teanna.
Thank you for your support. What I can’t get is that I am under 6 different consultants, 2 professors, the pain management team (which can’t help me with my back). I have 4 auto immune diseases. Plus I’ve not long being diagnosed with Lupus and Liver Failure (this is down to to many chiefs and not enough Indians). They had admitted it was their fault, and cannot do anything about my back, (that was my main problem at the start). Now I’m climbing the walls and I can see myself doing something or buying something over the counter. I can’t use my right hand anymore due to the Ulnar verve in the elbow, so you can’t grip anything. So I can’t do any of my crafts which I could once do, and the doctors will not take the chance operating it.
Again, thank you for your love, advice and support.
Thank you
Teanna
I truly understand pain n what ur saying.
Medical marijuana doesn't cure severe chronic pain but let's u breathe with the pain lessened.
Are they prescribe or do you get them from a health shop. I have to be careful because of the APS, and there are a lot of natural ingredients that I cannot use.
I was going to suggest medical marijuana, or if they won’t give it to you, perhaps try a high % CBD oil (I know the name of a reputable company, although I figure we’re not allowed to advertise on here, so DM me if you want that company’s name).
I really hope that something gets sorted for you soon, because I have the crumbling spine in the same area as you, and I have no idea how I would cope without pain relief, so well done for managing to keep sane through this! I also have an underactive thyroid and a couple of autoimmune conditions, so I empathise with what you’re going through.
As someone else has said, please speak to PALS about this, because it’s disgusting how no-one will now help you.
Please take good care and keeping fingers crossed that someone, somewhere will help you x
Thank you, but my history with pals are not good. I did send an earlier message. Thank you, I just hope that talking to my GP tomorrow don’t say again “she can’t help”. I don’t think I could last long without something.
Thank you again, you all have understood where I’m coming from.
Hi, is that anti flammatory? (Sorry about the spelling). I’m allergic to all NSAIDS, and meds like gabapentin, or anything like a blood thinner, aspirin etc.
Hey Teanna..fyi.. u mentioned allergies n meds I thought??!! I was on hundreds of meds over 20 years n same issue.Once I stopped the prescriptions my allergies n interactions stopped.Now I have VERY few allergies n interactions.
Sorry for late reply...I'm new to this online forums.
Kratom is not a NSIAD. I live in the uk and you can get it delivered next day. Lots of people have managed to get off the pharmaceutical pain medication by taking kratom for pain relief.
I agree with all the comments about doctors thinking they know it all..I only take advise from 1 doctor and his name is Mr Google..the only time I go GP is to get a referral for a scan or blood test.
Hi, when I was a early 20’s, I was under the gastric. He put me on anti flammatry (I started to bleed). So things like voltrol, (sorry for misspelling) medical blood thinners. I had a patch text for allergies, yr be amaze what I’m allergic too.
So if I don’t get any luck tomorrow, I don’t know what I’m going to do.
Hi i too have a crumbling spine and chronic osteoporosis i ve been on opiates for some years now which the docs were increasing time and time again i called in to my docs for some phone advice and what I ended up with was a angry locum doc on the other end of the phone asking me why the doctor had given me such painkillers and at the dose i was asked why I had not questioned the doctor for prescribing them well I thought the doctor who percsribed them knew more than i did having been through medical school etc silly me in the end she shouted that she was taking me off most of what I had been taking at once this left me not only confused but more importantly in chronic pain then I had a appointment with thank goodness a understanding doctor who gave me gabapentin for nerve pain .
I just read your post,and believe me I’ve been in that position,where a GP/consultant think there god. It so annoys me,help yourself by looking on the internet,your told they are your doctors not the internet. Then when they make the mistake it’s your fault for not helping yourself. Makes me so mad,as I said in my post below,you live and learn,we people who are ill,pay there wages,so they are there for you.
I once had a arrogant GP type out a letter in front of me to send me for a colonoscopy,I said “ You think I’ve got cancer don’t you” he just nodded yes.
Now if I didn’t know any better that would have worried me sick. Some are not worthy of the status of being called a Doctor. Ok rant over 😉
Thanks for your reply I had 1doc sit me down and say ok you've got chronic osteoporosis why he actually asked me the why I sat there and was a little stumped i was under the impression that he was the doctor and thus the one with the answer to that question then I asked for a honest answer to my question which was will i end up in a wheelchair because of my condition and he looked puzzled then with pity and said yes that was it have a nice day next please
I think the word CARE has gone . I sometimes wonder why some of them do the job if they don’t feel empathy for there patients.
Here’s just one more example,I had a heart attack and was put on life support,when they took me off,and settled me on a ward,my consultant said in front of me,to my hubby,” if she has another one we won’t resuscitate her ,that did upset me,and my hubby went mad. Needless to say I never saw him again,and the consultant that replaced him was just the most caring person I’ve come across.
That was ten years ago😊 boy I’ve been to hell and back,but now I’m older,I don’t think they think I’m worthy enough. But I still bleed and I still feel pain,which is what I say the minute I hear,but at your age😡
I know how u feel, I’m already in a wheelchair, I get 41 and a half hours for carers, and they feel helpless. My back was firstly caused by pregnancy, and 3discs came out. They did not go back so they operated. And they blamed me. It’s an utter joke.
And all the doctors call me a complexed case and have me on show for the students to study, how dare they.
Teanna,I have a daughter in law with exactly what you just explained,she also had two operations,and now she never gets dressed or goes anywhere if possible because she’s in so much pain.
She refuses at the moment to use a wheelchair,she’s on crutches. I really feel for her,because she’s only 46yrs old,and this started ten years ago. If she read your post,she would probably agree with you.
And they say they can’t do nothing,she was also on opiates,but due to me and my experiences,my son told her to try not to take them. She’s now just left to her own devices.
Hi, I’m sorry to hear that’s it’s been left to her own device. I suffer with fatigue, that is due to my illnesses. But it’s hard to get ready, I only go out to my hospital appointments. I have all intentions of going out, but it’s hurts so much, plus by the time I wash/ready but the worse is putting my creams on (4 types), by then, I’m exhausted, hurt, but no relief of pain, that’s generally my life. I was so active, own company, and my hobbies, now without a grip I can no longer do nothing.
Teanna, it’s like doctors are disabling us on purpose. I feel I was victimized and not given proper healthcare to.
Like you, I had a full life and it’s been taken away from me, I get it. I think it should be criminal to dismiss and neglect a patient. Can you hire a lawyer?
Hi, I hope all went well with your tests. Yes the doctors play god then have the cheek to blame people that are on opiates, but it was them that prescribed it, I’m not a doctor, I did not prescribe nothing, I did not know much about opiates. I try to have a decent talk with them all, and they make sure that it’s our fault and have a right go, some have bought me to tears.
9 out of 10 doctors have never suffered pain (maybe a toothache). Who gives the right to play around with our lives. They are culprits that put us on these tablets, then have the cheek to have a go and tell you that it’s in yr mind. How can it be when the are the ones that prescribes the meds. I feel as though I can’t approach my GP as she is adamant what I can take and what I can’t take, it’s up to my professor, and she tells me it’s up to my GP. Isis phone my GP and she has a 3 weeks waiting time, a week for a phone call. So I will try the pain management and the surgery on Friday.
Oh Teanna,I’m with you all the way. But it seems we only learn when we are suffering the consequences of THERE mistakes.
I now take nothing my GP or consultant prescribe until I’ve looked it up.My Gp told me I could do her job😂. But I wish that had been years ago. All I can do now is make sure my kids don’t make my mistakes. Having said that my eldest lad is on Tramadol ,but he thinks he knows better.
I wish I could be of more help to you Teanna,but I can say you must push to get the help you need,don’t be put off by stroppy receptionist.
I wish I could take gabapentin, or any of the family, but again I’m allergic to them. I have to be careful because of the APS, anything that makes your blood thinner is dangerous for me, I’m already on 2 injections a day, and my circulation is bad, my legs have gone black for the lack of blood flow, the blood goes down but coming up is really dangerous, so they have called me in urgently to have a doplar test.
It’s so wrong to make someone suffer when it’s not your own fault.
Hi, I cannot walk, it’s not just my back. It’s taken 26yrs to get to this mess. My GP is great, but she said contact the pain management clinic, they tell me to ask my GP.
I know that I might sound that I’m weak, but with 12 illness, what do I do. I’m I’ll see what what my GP says tomorrow.
Sounds like you are at the end of your teether, not easy to control pain with no painkillers. Have you ever been offered injections they work well for many. With your liver shot it will be hard to find something to help and with osteoporesis your going to have the risk of fractures causing more pain . If it wasn't for the liver I would say try a shot of whisky. You may have to make do with rubs or sprays I use Dynamint which reduces the pain and strengthens the muscles. Sadly there is not much to suggest, you must feel like giving up, and I am sure like many of us you get worse days or are they all like that ??? Liver failure effects your whole body functions. The latest to help pain is CBD but I have not found that useful for myself. A freind uses several herbal remedies for pain. I have found lesser doses more often controls pain better but sorry I haven't found any magical cures and I have had pain for more than twenty odd years. I wish you every best wish and do try to do what ever makes you feel more comfortable.
Hi Teanna,Me like most posts above feel your pain,and that goes for all of you. Like many others I’ve suffered chronic pain for some years now,so I totally empathise with you all. I’ve tried just about every which way you can to alleviate pain. I have stomach pain everyday some days are worse than others,but still pain. Every night I cry to my hubby who can’t do anything.
I haven’t found any medication to stop the pain. And I’ve had them all,including CBD oil,and Cannabis gummies. I also suffer with Rheumatoid arthritis,under active thyroid,Emphysema,and Osteoperosis,but they are all under control,but my stomach creases me. Over the years I’ve been put on medication that’s done nothing for me,but I’m now addicted to and they still don’t help me get off it. BUT,I take Diazepam which I find to be the best tablet I’ve ever been given,I can take it as needed,so some days I cope without it,it does not stop pain,but certainly keeps the anxiety the pain causes down. When I go to bed I take once again if needed 1 or half a Temazapam,which I believe a good nights sleep helps to cope with the pain next day. I’m sorry to rant on,but I’m just like you all at the end of my tether. I also must add,I’ve tried all the opiates to,but I give them up before I got hooked,because they to didn’t work. You live and learn.
I wish u all the best. U have quite a few of yr health issues. But I’m glad u have someone who cares and is there most of the time. Although my children moved quite away, I don’t see them, plus they are fed up when I moan.
I’m praying that she has something that can helps.
I have CRPS which used to be known as RSD and I have chronic lower back pain and osteoarthritis in my knee, so I understand pain.
I don’t know if you are in the UK or US but I’ve had lidocaine infusions, nerve blocks, tens and looked at a SCS implant. Are any of these variable for you? I know in the US ketamine is used more than it is here and you can get infusions with that aswell.
I am no doctor but when my liver started to have problems (fatty liver) my pain management doctor changed my pain medication to oxycodone. Percocet is a combination of acetaphetamine and Oxycodone and that's why it works so well. It's the acetaminophen that screws up the liver not the oxycodone. It is possible to just get the opiate without the acetaphetamine. But it sounds like none of your doctors are willing to work with you as it relates to pain medicine. You might ask about having a spinal cord stimulator trial done.
No-one will touch my back, there is nothing they can do. In the past I had a lot of things done, even a machine that was put inside me and wired up to controls that I would turn it up or down. It did work until i went to Thailand, there cables were so low that the machine would come on automatically. I ended up having it removed as it harmed the nerves in the back. I’ve had many but it’s now to late. I just can’t live like this. I hate when they say “you have a low freshold” I went mental, they all think it’s my fault but it’s them that treated me.
Thank you.
Have you thought of a transdermal patch. My mom is a liver transplant and is dealing with kidney problems, chronic pain, and osteoarthritis etc. she started very slowly, and every week went up to a dose that keeps some pain at bay and uses extra strength Tylenol rapid release capsules to help with the pain. Just a thought!
They contain fentanyl but it’s safe because it’s prescribed. They start at 12.5 mcg and progressively increase to as high as 100 mcg or more.
Hi
It really angers me how we are treated. I've got Nash(non alcoholic steatohepitis caused by meds from my drs over the years), a GP at my surgery was really shocked when I told as he is well known for writing scripts out as we go in to see him.!! Might make him think!!! Love and hugs Lynne y
Hi have RSD and because there is not enough money to do any more research, they have now put into the title of chronic pain sufferer, and when the doctors see this title, I feel as though it’s in the “all in the head mode”. I asked the consultant why have you done this because it puts you in this bracket, and that’s how I found out. Plus I had to go through a placebo test (I did know what this was happening, but now it’s now stopped the clinic.
So what’s happening to this NHS???
On Mon, Jan 27, 2020 at 3:37 AM UTC, <lauriebugeja@hotmail.com> wrote:
Hi Deanna The patch she is using is fentanyl. She can't take opioids either. The patch is absorbed through the skin and you change it every 72hrs. For her back, where she has degenerative bones and suffers from osteoporosis she received facet injections guided by cray and those gave her relief but only temporarily but she says she'd have it done again. Good luck. Sent from Samsung tablet. -------- Original
Hi, I was on these patches, one of my consultant stopped these too. I thought they did have some kind of opiate otherwise they would not have stopped them.
All the doctors have given me is paracetamol. I can’t take this.
I am on the fentnal patches for osteoporosis which is chronic and I also have osteoarthritis as well the patches take the edge off the pain I am in I know that if I tell my doctor that they don't cure all the pain away that she will wish to increase the dose which I don't feel ready within my self to do yet I am am on 25mg per hour at the moment
Teanna, should you hire a lawyer? It sounds like the doctors don’t believe the severity of your pain. You need pain control and you have a right to it.
Hi, they have admitted that the all consultants did not have a meeting to discuss my meds, and because I’m under so many docs, I was known a complicated case but it was then they realised that the RED markers of my liver went sky high, my GP sent me to have a liver scan. He said don’t worry it’s just a fatty liver. But I ended up in ICU, my body had swelled so much that I could not see because my eyes had closed, fluid was literally coming out of my eyes, I went up 3 dress sizes, then realised that I had liver failure all caused by opiates.
But now they have made me feel it’s my fault.
So now it’s my fault. I should have got it writing. The Doc that did the liver scan, they told me that I should have had the scan in a hospital, but as I said, my GP sent me there. But they can’t find the result.
So again, they are blaming me. To try and take further action I have no chance.
Hi all, i had to call my GP. She will not help, I told her that I could not cope with the pain and that I spoke to the pain management team and they can’t do nothing for my back, but the area pain management was going to chat with my GP but he did not contact her. So I phone her. She warned me that she has given the most she could Paracetamol, 3.5ml oramorph. And that was it. She warned me that it would interfere and make my Liver worse. I told her “what do I do”? She replied that it will get worse, but she will talk to the pain management team.
I’m giving up fast.
Thank you for advice, and I will keep u up to date.
Hi all, just to keep u up to date. I’ve waited to get these patches (starting tomorrow) after all this time. I’ve not been able to do anything, I wanted to end it all, I was begging my GP to write a prescription for the patches after a meeting with the pain management team (based in my GP’s surgery). They came to my house knowing the pain I was in, plus I did not want to carry on. But my GP was away for just over a week, this was due to this out break (it was the surgery in North London that had to closed), so that was another week that went by. I’m also suffering with bad fatigue, would that be due to all my Autoimmune illnesses? etc, I’ve suffered with it for a few months now.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
When should I stop screaming? Why do they look at me as if they don't believe me?
Any painkillers that actually work?
Best pain meds?
24 year old with chronic back pain and siactica
