Hi everyone I suffer from Neuropathic leg pain and back pain arising from a operation I had to repair a bulging disc. I was told that I could have a spinal cord stimulator after going to pain clinic. My question is what do you say to them? As I went to the assessment with my wife who was told she could not be in the room with me so I had to wheel myself in there by myself I was asked about my day and had the most adverse reaction to what I said I did which isn’t much as the amount of pain I am in 24/7 I said I get up and my wife helps me dress etc and gets my breakfast so I can take my first medication of the day then afterwards I rest that was wrong!! I fall asleep around lunch time due partly to the medication and fatigue because of the pain that was wrong!! my father helps us with transporting our children to school and back I mentioned he’s terminally ill with cancer I got told he can’t be that ill!! All he does is drive them then he rests. I felt nothing I said was right what could I say? “oh yes I mow the lawn whilst cooking and hoovering washing the clothes and doing the dishes all at the same time oh and I’m riding a unicycle!!! Hahaha I’m not going to lie I told the truth and was b£@£)ked for it I really was.
So sorry for the long post.
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DonutEater
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Your wife, or anyone else you want, can attend any appointment you have. Complain to the Consultant in charge of your treatment and, if you want, you can escalate the complaint via the hospital PALS service.
Things seemed to have changed at Pain Clinic, However they have offered a stimulator for your spine, take it and use it. You, it would seem need to prove yourself to the Clinic.
Have they offered courses or treatment plans to help you improve or control your health concerns.
When I was at the Clinic they explained techniques and various was of controlling pain.
Yes sounds about the same although some courses were in the afternoon or reliant on the department that was treating you and explaining various techniques. My courses lasted near on six months if I remember. We got used to the staff and it was hard work although very interesting. That was thirty years ago, it did a good job then and I learned how to look after myself and medications etc.
Yes it's pain rehab rather than an actual clinic for treatment! It wasn't Bradford was it by any chance?
Where you went sounds like pain rehabilitation, not an actual pain clinic, because that's almost exactly how my appointment with one of those went. The only exception was that my daughter wet in with me; I left the room in tears! My GP was just as shocked as me and referred me to the correct place, where the specialist was kindness itself and arranged appropriate treatment for me. So I would suggest that first, you go to your GP and tell them exactly what happened, and ask to be seen at an actual pain clinic (do your own research first, find out exactly where your local ones are) and write a letter of complaint to both the clinic you attended and PALS.
Thank you for telling us your experience with pain clinic. It seems to be a very hit and miss approach for many patients. I had one very sensible , then one just wanting to pass me to a group to be told the same old stories, then the sensible one again so I am now making progress with clinic but not on the pain side. My back is bad today after just carrying a small shopping bag , it was the same when walking to the chemist for pills. Your experience was very uncaring, they want us to be active then suggest we are well if we are active, I don't mow the lawn but still remain independent and do many things others would not bother with. Like you I fall asleep in the chair due to effects of painkillers, sometimes sleep is interupted by pain. You have my best wishes and thanks to your family you can still live fairly independent but less active like myself. Enjoy your days best you can & your family.
That’s absolutely disgusting!!! You should raise a formal complaint - such behaviour is absolutely unacceptable 😡🤬!!!
I have been in exactly the same situation as you for weeks and months and I did exactly what you did - just that I stayed in pyjamas all day. Some food, and the loo where the only “activities” outside of laying in bed (on my tummy, propr up with pillows) and sleeping or reading/ watching a film etc.
I hope you recover soon. The spinal steroid I jectip a helped me a bit but I’m still on all the meds - just trying to come off then slowly. I can walk again and sleep a little less. But still more than normal!
I filled in a form prior to the op and nearly all the risks that could happen did so they said basically it’s the risk I take it took them ages to pull my nerves off my disc and then I had a spinal leak on top of it all. They have said I might be able to get a spinal cord stimulator but other than that nothing else.
Sadly the British healthcare system is not geared to take of people with pain issues. Besides fleeing the country I'm not really sure what to tell you. The electrode thing is highly dubious and have a really high failure rate, where it makes the problem worse and not better and in case it fails you are pretty much left to your own devices, doctors here won't help you one little bit.
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Pain and Costochondritis 
Hi...well went pain clinic....what a waste ofxxxxxxx
CBD (thc free) for pain relief 
