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Pain management clinic useless

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
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 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.?.?
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