Pain clinic-devastated : The waiting... - Fibromyalgia Acti...

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Pain clinic-devastated

sssglsjhs profile image
8 Replies

The waiting list for the pain clinic in my area is long even when classed as urgent referral.

I've waited and waited to then receive a letter informing me that the NHS pain clinic is NO longer available and nothing else in place. Contact GP with any concerns.

I'm so upset and don't know what to do....!

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sssglsjhs profile image
sssglsjhs
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8 Replies
Arymretep profile image
Arymretep

Sorry to hear that, I’ve never even been offered going to a pain clinic, and some on here who have weren’t too impressed, so I don’t think it’s the end of everything, what bothers me though is they are cancelling most of the normal tests and treatments, even blood tests because of lack of money or equipment, no test tubes apparently, yet on the news yesterday they are setting up special clinics for long Covid sufferers or for anyone who’s had Covid , seems there’s endless money for that while most of us can’t even see a GP

Painny profile image
Painny in reply to Arymretep

I agree, I’m a long covid sufferer but they are not even prepared to see me …it may be that they are getting up to gear for this winter ❄️ I’m both dead and alive at the same time not only because of Covid but so many things going on 😥😥

Painny profile image
Painny

Hiya,I’m sure this is not a consolation to you, I have given up on them. They phoned me after almost 2 years of waiting, then a letter basically saying they can’t help, then another contact from a different part of the hospital, they offered a zoom meeting for 4 weeks….honestly waste of time..

Have you tried hot yoga? it’s helpful as long as you do not overdo it. I hope we can come out of this Covid causing so much misery. It’s so sad that we all try to get somewhere with this ailment but let down. All I can say if it gets bad just go to A& E as I do.

All the best

rosewine profile image
rosewine

I used to attend a Pain Clinic and they were brilliant in advising my doctor on medication and giving me Electro Acupuncture every 4 months. I was devastated when the consultant retired and the hospital decided to discontinue the outreach clinics so I know the feeling. Is there an Expert Patient Programme in your area as sometimes just being part of a group that are all dealing with pain can help and give you coping mechanisms. I do hope that you can find something that helps.

Penpusher profile image
Penpusher

Hi,Please contact your GP.

I'm currently halfway through a pain management course online and I can't tell you how much it's helped.

I was borderline suicidal, feeling there was no hope, that life had passed me by and that I could never again do those things others take for granted like going to the pub, sitting at a concert or even on a train or bus.

If you explain to your GP they may realise the extent of the need in your area and make provision.

I'm in Bournemouth and it's Dorset Pain Management team who run the course I'm on. They have a website with loads of resources.

So far I've learnt about the science behind pain, about the side effects of pain meds, exercises that really help, meditation, how to manage my actions so I don't over do it and loads more.

It's given me hope. It's made me see I can help myself. I feel now that I'm not at the end of my life.

Please keep going on. If your GP can't help, please look online. Many resources are also on YouTube.

Also Des Quinn on here recommended a talk on YouTube with Dr Rachel Zoffness who is a specialist in pain management and also trains doctors on pain. She has written a workbook for sufferers that I've ordered through Amazon. It has great reviews so it's due to be delivered in 3 weeks time.

So there's lots of stuff out there that's free to access. Don't do too much at once and take it seriously. I'd just use NHS provided content at first but please just try it. Little and often.

Take care and good luck!

Jasharper profile image
Jasharper

As I understand it the doctors/hospital cannot help much with fibro pain.Medication is about as much as they can do.

I have underline back issues as an extra issue so I have been waiting since nov last year just for a assessment appointment next month. As someone else said not everyone is sent to pain clinic.

Massage and hypnotherapy can work well

But you would need to fund that yourself

I hope this is of some help

Kitten-whiskers profile image
Kitten-whiskers

I am sorry to hear that. I had attended a pain clinic and it was the worst thing I ever did. The nurse wrote to my doctor and told them to stop my pain medication - which they did, the receptionist was extremely rude - it was that bad I wrote and complained but on a more positive note - physio was very helpful, really lovely people trying to help - maybe you could get some physio sessions instead?

Best of luck

Debs

Isla63 profile image
Isla63

I would echo what Penpusher has said. I too used the Dorset Pain Management service and it was a worthwhile program. I’m just wondering whether the service has stopped because of the recent review of Fibromyalgia and the NHS is actually going to replace it with something else?Call your GP or PALS for advice.

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