Hi, just after a bit of advice...

[QuietMouse2]

Hi all, I'm incredibly new to all this, so please bear with me!

I'm a bit concerned about long-term opioids and chronic pain. I've been taking opioids since 2010 roughly, and I went to see a Pain Clinic person and she said that she was stopping all my pain meds (which were Longtec, Lynlor and Oramorph). I have no problem with this in itself, but when I asked what I should take instead, I was ignored.

I cannot take aspirin or ibuprofen anyway.

Anyway, despite her letter stating that I should be 'supported' by my GP during this time, I wasn't; so I made an appointment to see my GP and he just stopped everything! So I asked him the same question...his answer was "take nothing".

I'm now in a lot of pain (luckily I had no withdrawal symptoms apart from the pain!). I have no idea what to do now, and I'm really struggling to cope with this.

Has anyone had a similar problem? I'd be very, very grateful for any advice.

Ps I had another MRI a few weeks after seeing the pain clinic.

Many thanks for your time

[Rosepetal60]

This is a difficult one. As I have very little experience with pain clinics and I'm talking about over 15 years plus ago. 1st one was one to one which I thought was odd, he said it was my fault I was in pain. 2nd one ok and gave me the option of a nerve block. I had as it happened due to waiting list of about 10 months had time to think about it and research and I decided it was too risky. You could of course consider changing your GP but apart from that, the only advice I can give you is to try another pain clinic, I've read they are all different, some good some not. Otherwise go down the complentary route. I've had a lot of help from Traditional Chinese style Acupuncture which treats ones body as a whole.

Im sure there will be someone replying soon with recent experiences and advice

[QuietMouse2 in reply to Rosepetal60]

Thank you for replying, RosePetal60. I'm very grateful for any advice about this. I've been waiting for a long time for an appointment to this local pain clinic so when I received my appointment I was (wrongly) thinking that I wouldn't be dismissed so easily. I've been offered a nerve block a few years ago but I was too afraid to have it done, now I would at least consider it.

I realise that things and attitudes change but to be blamed for being in pain is truly both sad and disgusting! I'm so sorry that they put you through that, and I hope that you complained.

At this time I will consider anything to get on top of this pain so thank you for taking the time to advise me. I hope that you are able to be as comfortable as possible.

Thanks RosePetal60

[luckyjim]

QM

I recently tried the pain clinic route and decided fairly quickly that it was not for me. My troubles also started in 2010.

Having no answer to your question is most disturbing for you,but not for the pain clinic expert. There seems to be a growing trend for no meds treatment. An experiment you have unwittingly become enrolled in.

A good GP would not let this happen

You will get your support, you may have to bang the odd table.

Keep trying. Regards. Jim.

[QuietMouse2 in reply to luckyjim]

Thank you for your reply, LuckyJim, as I said, I'm very grateful for any and all advice. I most certainly didn't have the option for any other treatment from this pain clinician, but like you, I'd noticed that there seems to be a 'no treatment' trend. Whilst I fully appreciate that this pain Dr is the expert, it felt like I was dismissed by her.

They've already refused point blank to operate on me, even though 2 surgeons have diagnosed me with degenerative disc disease and on at least 2 levels have herniated. I've also been told that (& I'm not sure about how true this is) if they were to operate now, chances are that it wouldn't do me any good and the pain might still be at the same level as it is now or possibly worse.

Did you have any operation to rectify your pain?

I'm not very good at complaining about practically anything but at this point, it looks like I'll have to learn quickly! I'll keep plodding on, and I hope that you've got a lot more support from your clinicians than I'm currently receiving.

Many thanks again for taking the time to reply and I'm grateful that you and RosePetal60 did.

[luckyjim in reply to QuietMouse2]

QM

You are the expert on your pain. Clinicians lack the practical experience of pain, though I have no real issue with their titles.

I could advise you to do nothing about your pain,I wonder which letters I could append to my correspondence.

Mine is just one voice on this site, there are many, all of which are prepared to help.

In my reply to you the other day, I forgot to mention the cost efficiencies of your suggested pain plan. NHS funding is around the £116 billion mark, withdrawing meds would certainly help.

I'm starting to waffle I'm afraid.

You are absolutely right, you will need to toughen up. You will also need an ally or allies. This is just to deal with those professionals who purport to help..Next you have to address ways in which you can help yourself.

If you haven't already done so, you will need to devise your own strategies, hopefully with the help of your allies.

You are the boss.

Jim

P.S Have recovered from my mini crisis, wrote same day an apology to my GP(ally) and will speak to him next week.

[Hidden]

Did they give any reasons for stopping the pain relief? Was it your own concern about being on opioids? I've been on them since 2008 and to be honest am generally happy to take them, rather than be in the pain I would be in without them. Maybe I'm not brave enough! It occasionally worries me but I then think that I have to get through today and stuff tomorrow/next week etc. You should not be told take nothing in such a callous manner. I can't take aspirin or ibuprofen either - they make me throw up.

Re the operations, I think it is a very mixed bag of results and hard to predict who it will work for. Not every back problem has an operation suitable to fix it either. Other people who have had successful ops can tell you their experiences but I only know a couple of people who had an op and they haven't been successful which I've no doubt has made me rather biased and wary. Then there is the risk of chronic post operative pain. I think I read on here that about 20% + of people in pain clinics are there because of chronic post-operative pain and that's just based on the people who go to pain clinics. There are possibly those who don't bother and these stats don't cover them. I might be remembering that incorrectly but it was a significant number.

I haven't been to a pain clinic but a friend has and she wasn't impressed (again biasing my view and making me quite happy not to bother with the painful journey I'd have to take to get there) and my GP tends to just listen (briefly) and say 'ooh, it is worse isn't it, oh dear'. I was offered Osteopathy (my ninth osteopath and many years worth of them not helping at all) and acupuncture (second - but only tried for months) a couple of years back but it didn't help. I have started to just 'accept my lot' a bit more. There isn't a solution for every problem unfortunately. Although my back did offer up a new variant on the theme of compressed nerves at the weekend and a new area of pain. Perhaps it worries I'll get bored. More bored.

Do persist with your GP or see a different one if they won't help as you should be given pain relief and not expected to suffer. They are trying to hand out less meds and do less operations but there are people who simply do need them. The NHS really is as badly stretched as the talking heads on TV say. I've seen a big increase in the crowds in waiting rooms and the waiting times unfortunately. Probably means we have to battle that bit harder.

Did your MRI offer up anything new or useful? Assuming you've talked the about the results with your GP.

All the best.

[Hartleyhare2]

I've been to two pain clinics. The first one was two hours a week over eight weeks when newly diagnosed. It was great to meet others with fibro, the physio and pain psychologist were very good about pacing saying no etc the hours input from the specialist pain nurse was dismal and as a group of eight thought her take a paracetamol and call me in the morning was awful.

The second one was specifically for my neck where I had a examination by a guy who was half pain Dr and half Physio! He referred me to AA course of gentle physio which helped greatly and I still use the exercises now. We briefly discussed Meds and I got the feeling that the game plan was to get everyone off Meds. I disagreed and said I wouldn't cope without my morphine as I would just lock up. So it was left at that , I was supposed to have a one on one with a pain psychologist but it never happened. My wife works at the hospital and they are both on maternity leave!

The biggest thing to remember, in my opinion, is it is the GP that prescribes your medication and can refer you to phsiotherapy. Therefore, having a good relationship with them is essential.

The last and most important point is that you should have been weaned off your Meds slowly not stop straight away as you could have gone into withdrawal and fitted.

I'm glad you didn't!

Patrick x

[Cb1963]

yes your quite right to be bemused with the pain clinics suggestions to stop your medications,I think your probably shaking your head in disbelief now,I think your probably feeling a little numb,and it's starting to sink in with what's been said to you,think you really need to get a full explanation to their reasoning and obviously to discuss a new treatment for your pain relief,explain stopping your medications had left you in pain that you thought might of got resolved at the pain clinic,not to come out with no pain relief at all,I suppose now you know where the pain is and obviously its not been resolved,so maybe it's time to find out what's causing this pain,and who knows it might be able to narrow down and finally cone to some sort of conclusion,good luck for now😊