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Pain management clinic useless

loopy12aloopy12a Posts: 10Member Listener
Due to an upcoming operation in a couple of weeks I was told I had to change from my MST tablets(160mg per day)  that I have been on for 15 years over to Fentanyl patches. Well the BNF guidelines state that 50mcg patch = 120mg morphine and a 12mcg patch = 30mg morphine near enough to my equivalent. BUT the pain management nurse I saw said she doesn't go by those guidelines and has her own conversion chart!  She insisted that I could only be on a 50 patch with no morphine and "that was plenty, I didn't need more" who is she to say how my pain affects me? Despite my arguments and explanations she wouldn't have it. So against my better judgement I did what she said and ended up not only in agony but bedridden as I couldn't move for pain. I have a rare serious back condition and after years of being under guidance of neurosurgeons have learned what does and doesn't work for me. After weeks of battling this out with her she finally agreed to give me the extra 12 patch and my pain is now almost under control again with some added ibuprofen. My operation is in 2 weeks then once healed I want to return to MST as they suit me better. However this nurse is saying there is no way she will issue me a script for the amount I was on previously and I have to ho down to 120mg per day. This is a drop of 60mg per day. What can I do? I have spoken to my GP who just says do what she says. I am not in contact with my neurosurgeons anymore. I am getting very anxious and stressed about this. Any help appreciated.



Replies

  • TopkittenTopkitten Posts: 962Member Pioneering
    I had to look up MST and I can see why this has happened. The problem with NSAID's (non-steroidal anti-inflammatory tablets) like MST is that they can cause severe stomach issues and milder ones even if combined with stomach protectors (which really is a must). The guidelines for NSAID's is to have regular breaks meaning that after a year then 3 months off them is required. However, different doctor's do use different figures. This is a guideline from the Royal College of Doctors and due to the current paranoia regarding actions for mistreatment doctor's will always follow such guidelines. Keep in mind that tablets in the stomach take a while to dissolve and will sometimes attach themselves to the stomach lining causing a localized overdose situation often leading to stomach ulcers.

    Depending on the type of pain you suffer opiates such as Fentanyl do not always work well. Buprenorphine and Tramadol sometimes work better but Tramadol is limited by dosage and Buprenorphine (tablet or patch) can cause allergic reactions especially in patch form.

    So that you understand.... I was on NSAID's for 4 years non-stop before having complications, Buprenorphine for 3 months before problems and Fentanyl for 5 years before having issues with that too. In my case the problems happened because no opiate treats neural pain very well and Fentanyl less than most. I did try different manufacturers as each has a slightly different formulation and sometimes that can help but for almost a year now my pain has exceeded the limits of Fentanyl any doctor will prescribe. The maximum dosage as per the guidelines is 125 microgrammes per hour.

    If, as I suspect, at least some of your pain is neural in nature it would explain why a direct 1:1 dosage was insufficient. There are a few specifically for the treatment of neural pain and I would recommend you to explore their usage with the Pain Clinic as they are more likely to understand and prescribe them as well as switching you from one to another more quickly in case of problems. Their names are Amitryptylene, Nortryptylene, Duloxetine, Pregabalin and Gebapentin. 3 of them were developed as anti-depressants and the other 2 as 'cures' for cerebral problems and ALL of them require to build up slowly to the correct dosage.

    I have been on a long list of pain killers over the last 15 years encompassing almost all of the common opiates and ALL of the neural pain killers. Please contact me or reply to this if you need further assistance.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • loopy12aloopy12a Posts: 10Member Listener
    Thank you for your reply. I have tried all of the meds you suggested and none of them suited me. I have been non strong pain relief for almost 40 years and have, with the help of St George's top neurosurgeons and pain team eventually settled on 80mg MST slow release twice a day with 400mg ibuprofen as well. If breakthrough pain still occurs I have oromorph as a top up..never has it been said to have a break, nor does it state that in BNF or Nice guidelines. I have yearly bloods to ensure liver and kidneys are all ok, take omeprazole to protect my stomach etc
    I have been doing fine until this lady started to interfere because of changing to the patches due to my op coming up.
    I have a rare intradural spinal lipoma wrapped around my spinal cord. Its crushing the cord and a matter of time before I'm paralysed from the waist down. The surgeons don't understand how I can still be waliking albeit with crutches and do have to use a wheelchair when out of the house. I have a tethered spinal cord, herniated discs, hypnosis of the spine, cause equine syndrome and I am also an amputee. So pain in my spine is crippling, literally, doctors and I have combined every sort of med and dosage over the years and after my last spinal op 15 years ago we found the mst/ibuprofen/oromorph combo worked well.
    Maybe I need a referal back to St George's.?.?
  • GalDriverGalDriver Posts: 46Member Courageous
    edited May 31
    I have secondary progressive multiple sclerosis with LOTS of pain, both mechanical (degenerative discs etc), spasms and spurious (feels like someone randomly poking me, ****!) Work, when I had a job, sent me to their pain management clinic.....what??! You want me to act like I'm not in pain?? Why am I standing? Because your rubbish diatribe has gone on so long that I can't stay bent! Why am I leaning on a wall? To straighten my back and I'd fall over if I didn't. OH you think this pain may need more that kidology? Congratulations.....get yerself a pair of long trousers! GRRRRRRRR. Rant over. My latest attempts, and most successful to date, at pain relief: Cannabis fudge (homemade) and vitamin B12......bloody hell, that was an eye-opener! I'm a long-term vegetarian and the only food that has B12? Meat. Oops. apparently even if tests show ok level then we could be deplete AND you can't overdose (just pee out excess) so I followed a nurse (with MS) friend's recommendation of injecting (sorry, only way to make sure it gets into system ok). Wow! My pain, energy and anxiety levels all improved. Then I reduced dose and felt [removed by moderator]....ooh, worse after feeling better...now back on the higher frequency dose and, after 3 days of crying in pain, I feel like kicking it's [removed by moderator] **** again! Apologies for bad language, I am an irreverent, potty-mouthed, lass. Lass? Yep, starting to feel it again even though 61 is fast galloping up on me. lol 

    Ask anything you want, we're all on this journey together. If my experiences can help I'll gladly share. Loopy12a, et al, I wish you comfort and good spirits. x
  • zakbloodzakblood Posts: 317Member Pioneering
    sorry to hear they didn't help you, they did wonders for me, and tbh was very glad to get off non-steroidal anti-inflammatory tablets, gave me no end of issues from long term use, which have carried on years after stop taking them, i had 12 perforation in my stomachs lining and a umbilical hernia, which has given me more complications still, with IBS and a weakening of my bladder etc 12 years still after coming off them, the holes have closed, the hernia gone, but left now with IBS for what seems like life and a bladder and bowels on a old man, aged 52, i shouldn't be like this and wouldn't wish it on anyone, only started off with 20 years ago spondylarthritis and Sciatica, 20 years later, the cure has been worse than the starting issues
  • mikehughescqmikehughescq Posts: 3,368Member - under moderation Disability Gamechanger
    Regular breaks from such meds have long since been recommended fir many reasons but one of the things which has been missed here is that the recommended drop may be explicitly because of the suggested surgery. 
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