I recently spoke to my doctor for my 3 weekly review.
I told him that the withdrawal is starting up again even at changing the patches every 48 hours (I was getting withdrawal previously around 50-52 hours). I sometimes feel it starting before I change my patch or most usually it starts about 30 mins after I change my patch as the patches take many hours to take effect (usually about 5-6 hours).
I also sometimes have weird temperature changes such as hot and cold flushes at the same time (like withdrawal) at random times in the day.
I asked what else there is after this and the said there is nothing.
I tried so many different mediations to help the pain that didn’t do a thing before the Fentanyl (other than cannabis but they won’t prescribe it for pain).
He suggested I could add a smaller patch around the time of withdrawal after this stops working, but he said this last year when I was on 72 hour patch changes and I said no quite simply because, every time I increased my dose before (I started on 12mcg), I would have a whole day of vomiting, headaches, feeling sick & hot. It was horrific! I do not want to do that every 2 days!!
I honestly think that was a strange thing to even suggest when I had told him the same thing before.
Reading other countries, they change people onto another brand or give them a different product containing Fentanyl for the withdrawal. I had previously asked about changing brand as mine isn’t the best one, but he said he isn’t allowed to. This will be because of funding. Each GP surgery has a different amount of funding and they all spent it in different ways. This one will have decided to only use this brand which is the cheapest available.
There are other opioids available but he clearly doesn’t want to try those, even though I am getting withdrawal between patches so surely a pill would be better as you take that regularly?
I know morphine isn’t as strong as the Fentanyl I am on (I use morphine for breakthrough), but surely something similar would be better as the issue isn’t they don’t work anymore, the issue is that they wear off too quick which happens for a small percentage of all Fentanyl patch users.
I know some people have used methadone tablets (Physeptone) for chronic pain on the NHS when they had similar issues with Fentanyl and withdrawal. but I mentioned that and he cut me off saying “I wouldn’t give you that anyway”.
There are many NHS documents available showing you can use it for chronic pain when other opioids don’t work but again he just doesn’t want to hear or care.
One article states it is available for: “Patients with chronic pain responsive to doses of strong opioids (<100mg Morphine Equivalent and 50% pain reduction” which is me!
He knows cannabis works for me and I know NICE don’t recommend cannabis for pain on the NHS but he hasn’t even suggested referring me to a specialist that can prescribe it (GP’s can’t prescribe it on the NHS).
He once just said “you should move to the USA, it’s legal there” which is not remotely funny! I am disabled, in severe pain and fatigued all the time and need a painkiller that works such as cannabis. Joking about it is not funny! We have it on the NHS here so cracking jokes is upsetting.
Yet he said there was nothing else!?
This is ridiculous. That is very worrying to think that is going to happen at some point in the very near future. I will have nothing else!
Some people may say “have you tried another doctor?”, well let me tell you that I have had this decades and seen many different doctors. I used to be at a different practice and I saw all doctors there (probably 5 or 6 of them) and they did nothing for my pain.
One sent me for a MRI when I had a different back pain issue, but wouldn’t do a thing for the constant chronic pain. They used to just suggest paracetamol, some would just offer physio referrals which didn’t do a thing.
That practice eventually said I wasn’t in their practice radius anymore. Apparently as I was just on the border before and because they had too many patients, they cut me off and anyone on that border of where they serve.
I had limited choices for another practice, but found this one. I saw numerous doctors (one diagnosed me wrongly for something else) and none cared again about my back. Some would just send me to physio again even though that didn’t help the previous numerous times.
I saw my current doctor who referred me to different places, albeit ones that were terrible:
The first one felt my spine and said it is fine (yes that was all) and told me to go back in a few weeks. I went back and said yes I still hurt so he referred me to a pain clinic.
Took many months to get the referral and when I got there this guy (not a doctor or nurse) gave wrong dangerous advice which turned out to not be a pain clinic at all! I asked him twice in different appointments if it was a pain clinic, he first said yes, then the next time I asked he said “no, but we all just help out” which made no sense (still no clue what that place was).
There as no doctors there and they couldn’t prescribe just could recommend things to my GP (awful place).
I also got referred once to an anesthesiologist who turned out to be a liar, not just to my face but also in a letter to my doctor and my doctor even advised me to complain about him as he was so bad! Details here.
Bad referrals but hey it’s the NHS so I am used to this, least he tried to refer me for help. I have hardly been referred anywhere and had minimal tests or examinations.
Also, my GP actually prescribed things. He tried lots of things (you can see in “about me”) and we started from smaller things and built up to bigger stronger things such as the one I am on.
That is why even though my doctor honestly isn’t that great (he ignores me a lot and doesn’t care about my other health conditions), he has been the best at trying to find something that works for my pain.
All other doctors want me off the opioids (due to the ridiculous “opioid epidemic” which is actually really opioid hysteria).
The NHS is following the USA in stopping opioids for chronic pain claiming “there is little evidence they work” when I and hundreds of millions could tell you they do work, albeit some work better than others, although for some people (like me) who use patches find that they wear off quicker than for others who have used them for decades with no issues and no dose changes.
I still have the pain relief, just sadly it wears off much too quickly. Shame that Fentanyl isn’t in a pill form as I am sure that a pill would work better than patches seeing as my issue is that the painkillers wear off too quick so I am left in withdrawal between patches.
As there is nothing else for my pain, how can they say that I shouldn’t get cannabis when I told them it works? How on earth is that fair? The medication is there on the NHS and via private doctors, but you can only have it for pain if you have loads of money and can afford a private doctor.
I will be left with patches that don’t work and nothing else to use. The pain was unbearable before, I cannot go back to that. I couldn’t even get out of bed and could barely move or sleep. I would cry all day every day due to the severity. No way can I live like that again!
