My big day😔😔😔

[Koomaroo2]

So today was my Big day attending the chronic pain team at derriford hospital,thought I was going to get help at long last.Wrong!!!. .Asked me what's been happening,told him all I could muster,everything! Even told him how I felt my life was ending how scared I felt.Anyway.... he gave me forms to bring home and fill out,then I said so when do I come back to see you? Thinking maybe week or so time,he says I won't see him again I just done assessment,I'll probably get seen in a few weeks time or even be month's!!!!!!! 😢😢😢😢😢😢😢😢.Nothing more I can do,disappointed yep! Desperate yep! Oh yes it's ok I got the forms to fill out I guess when they get em ill be on the system!

[hebden]

I went around in circles with pain clinic since 2013. I have just been started on their 9 week course (used to be 12 when I first applied all that time ago). Turns out its a postcode lottery and what is offered in other parts of the country is not in my area. They offer no pain relief advice. They tell you how pain and nerves work and offer mindfulness practice and group talking/discussion. As far as I know this is all Im going to get but Ive heard it is different based on where you live. Don't give up, I had to keep on at them, and you may get something more from it than down here. x

[Koomaroo2 in reply to hebden]

hebden .From.what you've said even more that iv heard from others with my illnesses,it's all waiting lists and very poor advice or action given ,in had mindset today that this was the start of maybe a road of recovery,just to be told all this crap today keep taking the meds see you in a few weeks or months time,I'm bed ridden most days I can hardly function at all I can eat much lost 2 stone since January I'm just getting weaker and weaker.Like you say it must vary from place to place,I'm trying not to give up but I'm running out of time.xx

[Koomaroo2 in reply to hebden]

Yeah I'm not sure what the plan will be for me must got to fill out the forms and send them back then in the weeks or months I guess they'll let me know,whenever if ever .xx

[rosewine]

So sorry I used to go to a Pain clinic and have electronic acupuncture every 4 months but when the Specialist retired that all ended. Apart from him checking I was on what they considered was the right meds that was it.

It is definitely a lottery as to what younger some others have had no end of different treatments it is so demoralising. I had to wait over 6 months to be seen and then another month for my first treatment. It would have been a year if I had a waited to go to my local hospital. Due to nHS cuts they made the time between treatments longer but at least I was getting them.

Hope getting in the system works it's magic as it seems you need some.x

[Koomaroo2 in reply to rosewine]

Yes I need plenty of magic it's crazy how long I have to wait xx

[jackie4ball]

We used to have what I call proper pain clinics down here where you would see a Dr and he would try different meds out etc but now you either see a mental health nurse, and occupational therapist and if you are lucky enough to be accepted on the course someone to teach you mindfulness. Other than that nothing no medication, no Dr just like going for a chitchat really. I spent 18 months doing this once a month then they dropped me not that it was helping anyway. What is the point in a pain clinic if they are not going to try and st least address the pain and find something that will help in some way.

Strangely in other areas you do still get a proper pain clinic with Drs. Seems to be a lottery of where you live!

Jackie

[Koomaroo2 in reply to jackie4ball]

From all iv heard I'm not going to get to exited about pain clinic seems like it's going to be a waste of time 😔

[notoverthehill in reply to jackie4ball]

Hi Painnfriends

I recently trended a pain clinic and was told the only help that they could give was a steroid injection in my spine and as it is collapsing i.e. Collapsed disc syndrome at least two broken vertebrae nd not suitable due to other conditions for an operation have severe osteoporosis they were unable to help other than to reduce the strength of my patch ,which my doctor has done not not in little steps s they omitted to say in the report but by nearly 1/4 no mention of other drug increase i.e. Pregabalin so other than suggestion I wonder how I have to reduce the pain I have just going to be in more No help whatsoever

Jean

[jackie4ball in reply to notoverthehill]

I am sorry the pain clinic has been of no help to you either I am starting to wonder if anyone is getting any help at all from there pain clinics. Why have they reduced your pain medication if you are in so much pain but not given you anything else to help makes no sense. I myself haven't tried the patches my son has but I prefer to take the slow release morphine morning and night as at least then I know I am covered I did lower mine gradually recently knowing I was having hand surgery yesterday and I wanted to know if they were actually helping since reducing the pain in my knees and hips was absolutely excruciating I drove 5 minutes to a friends on Tuesday and on the way back was in so much pain it brought me out in s hot sweat and had to take oromorph as soon as I got home. I have put my dosage back to what I was on now to keep my hand a little less painful but taking the oromorph as well. I think you need to speak to either your GP or pain clinic and see why if they are reducing your patches why aren't they covering you with something else for the pain. Wishing you the best of luck and sending gentle hugs to you

Jackie xxx

[luckyjim]

K

Unfortunately, your experience is so familiar and mirrors my dealings with my pain clinic.

Pain clinics do not enjoy the best of reputations and it is not difficult to see why.

I would love to be able to sing their praises and some, no doubt, will feel able to do so.

Best Wishes

LJ

[Koomaroo2 in reply to luckyjim]

Not much hope really is there for knows how I'm going to get through this no support and docs waste of time

[spider555]

We definitely get a sense of well it's not a proper disease or illness. In the head, straight in the bin...

You're meant to have a schedule from the pain clinic.

I tried to call my pain nurse but she was on holiday. Talked to someone else who said she couldn't help and even thought It was funny 😒

[Koomaroo2 in reply to spider555]

Same song always seems to play,no one listens and no one belives you just take a handful of pain killers that don't even work I'm at a total loss 😔 no hope left ill ever get better.xx