Anyone been to a pain management clinic?

[lolaflores]

If so, how hard is it to get referred. Is it useful, I have heard many things. Possible to go private. Oh and anything else you might think useful to a deranged back sufferer. My gp has confidently told me that standing up straight is very useful. that was pretty much it. Don't get me wrong, I believe in the importance of posture and the help pilates can give, but with nerve pain? At a loss

I went to one for chronic pain. That was for my back too. You could only get there after physics referred you in our health authority. It was pretty good, as I got to see a Consultant/ MRI's etc stemmed from there too and led me ultimately to surgery.

I found the key is to understand the system, so at each appointment ask what's next/ what's the time scale on that working/ what will you do then if that doesn't work, etc? So for example I had some steroid injections into my spine, but they expected you to a) wait for an appt, then b) wait for 3 months to monitor how effective they were. you then had a follow up appt, and then would be referred to a surgeon if nothing had worked, for which of course there was another wait. That added up to about 5 months of pain. Knowing the system meant I could talk them into booking me an appointment with the surgeon on a most likely I'd need one basis, rather than a let's wait basis. Saved me a good few months I reckon. Good luck!

oh, very helpful. I get the feeling that only crisis management is the way of the world here.

Definitely that's the way. I was told by the physio that over 90% of the people they see are curable and a lot of back pain rights itself, so they delay referring people as it's so often a waste of time. So you get stuck in a waiting game, and that's multiplied if if you appear to be upright and vaguely functioning. You have to be forensic about it I reckon. Took me 4 years to have surgery, but it was essential and no other option available. Am fine now though and they were brilliant. Just took an age!

i did ask my gp whether something would happen if I was in a wheel chair, which without wanting to sound dramatic (with my reputation) does not feel that far off. thanks for you words of confidence and insight. it is such a long road

I suffer with chronic pain because of an incomplete spinal cord injury , 3 fractured vertebrae in my spine, spondylyothesis, spondylyosis and spinal stenosis.
I was actually referred to the pain clinic via my spinal surgeon. I've had previous spinal surgery and am expecting more.
Pain clinic are okay, can experiment with different painkillers.
They run a pain management course too.
Since my sci, I've had intensive physio and hydrotherapy.
I use ice packs. But you could also try heat packs, a TENS.

I so remember those times. Really hope you get things sorted and moving fast. MRI's are essential with back pain as it's the only real way they can tell what's what. Push for that if you can.

I'm in a wheelchair because I'm partially paralysed.

reenypip hope you didn';t feel offended by my wheelchair remark.

smee is right - an MRI scan can often pinpoint exactly what is wrong and whether surgery/physiotherapy/medicated pain management is the way forward. I paid to get mine done privately and can honestly say that it was very helpful.

You need a proper diagnosis before any treatment can happen.

Reeny, you have been through the mill. How did you break your vertebrae?

had the MRI and GP told me no surgeon would go near my problem because the disc is only touching the nerve and there is no stenosis. i suggested that this was an opinion and not a fact...he didn't like that. have pushed for an ortho referral, but as someone else has said, all of this is

IME, with DP, the pain clinic .

It was mythical for many years: he didn't get an appt until he'd been basically paraplegic (he's now quad with a cervical sci) for four or five years so a wheelchair is not at all a good passport.

The guy he sees is absolutely great: very practical, very realistic. He works mainly with people who will always be in terrible pain and he's very up front about that. He can prescribe much higher doses than the GP of some drugs, like gabapentin and fentanyl, but he mainly works on neuropathic (nerve) pain so drug therapy is of limited value. He's been somewhat helpful in empowering DP to manage his pain, as in - to feel more in control of himself-in-pain, but there's no pain clinic pill that your GP doesn't have (pos ketamine injections...). There's no clear referral path out to surgery from the pain clinic AFAIK, only to palliative.

BTW, beyond drug therapy, the most useful things to DP are: daily physio exercise (like Pilates), nerve confusing things like Capsaicin cream, icepacks, and wheat wraps, and just putting lots of mobility and strengthening into the back. I can find myself doing physio at 5am -slow regular movement makes the biggest difference day to day, after baclofen.

In general, aye, the NHS only deals with crises. It's brilliant at emergencies and absolutely rubbish at everything else.

is the capsaicin cream the stuff made from chili's? am on gabapentin which has helped but mashes the brain up slightly. however, I am feeling its effects short lived. It sounds like your DP has lots of support from you. Where would they give you a ketamine injections? Someone said to me that it is possible to put a local anasthetic alongside the nerve site to knock it out for a while.

I walk every morning and every afternoon. sometimes it really hurts. I do slow stretches but reckon I need to be more consistent with it.
from time to time I panic at what may or may not be ahead of me. Losing bits of everyday life piece by piece and not being able to do a sodding thing about it. the constant pushing and badgering is draining too.

Yeah, the chilli stuff, it is.

Consistency is key. We reorganised our whole life around physio, really. There's a non negotiable hour every day (our physio hour is 1.30 - 2.30), plus movement every 120 minutes on turns. It's really hard to keep on with on your own - if you can sort of attach it to something you already do and make it a habit, or get someone in to help you, those are the best ways.

The pain clinic can prescribe up to 3600mg of gabapentin daily, which is double the GP prescription limit, so if that's working for you it's worth pursuing.

I'm sorry you don't feel supported. That's really hard to cope with, along with everything else you've got going on. Pain is so frightening and tiring, for everyone, really, and of course almost impossible to empathise with, because we forget the reality of pain as soon as we stop feeling it. I think that's probably a good self-defense mechanism (or else we'd all be really traumatised), but so hard for everyone who doesn't stop feeling it! Really draining! /me hugs you gently

I am taking way less than that of the gabapentin. I think there is an empathy burn out for my partner. then I try and be normal and that is pretending on my part. he asks me how I am feeling and I get pissy because I feel like he wants me to wake up one day and go hey I feel great, lets go water skiing. And I can't do that so I just keep it to myself.
Sex happens not that much and is very concious of how fragile I feel, but we enjoy it when we can, but I know it is frustrating for him.
Thanks for the gentle hugs. Where do you get your hugs from if you don;t mind me asking. it sounds like you are so clued up and organised.

Oh well, DP got sick when I was, hm, 19 so I've been doing this a long time. I was mainly a lot more rubbish and not clued up, but you do anything for ten years and you get (a bit) better at it.

Yes, that's the thing about any chronic injury: people can't really grasp it. What, you're still in pain? Again? Even when it's inconvenient? Even though it's Christmas?

Empathy burn out, weirdly, happens to more empathic people, I think. I don't have good empathy, only lots of willing. I try to go off what people tell me about their life, rather than my own insight, because my insight is pretty poor. DP has learnt to be explicit about what he needs from me: a drink, to be left alone, attention, etc; he does not have the luxury of having anything anticipated. The flipside is that he does get his drink/backrub/attention. Articulate your needs, I am always begging him!

I think it's hard to do that, especially if you're a Guesser. If you're a Guesser, I observe, you also do a lot of guessing about what other people want from you - you are constantly engaged in a very complicated negotiation about what it is okay to express. I have no advice there, haha, sorry. I am an interpersonal ingenue. But the hot/cold therapy, that I can advise. Cheapest at Medisave.

Interpersonal ingenue....that fucking rocks. can i get a t-shirt with that?

I think you def need to see an orthopaedic surgeon - its only when they totally ran out of ideas that my mum got referred to the pain clinic. She had some success with the orthopods doing spinal injections as well as surgery.
The pain clinic are a bit pants tbh - you only get an appt every 6 months, with no chance of review before then.

I was sent to pain clinic for pregnancy related back injury. Was shit. They gave me crutches, support belt, swathes of paper and leaflets though.

I want a miracle cure!!

toddlerama, I am on the list in front of you for a miracle cure. I believe the pregnancies had alot to do with back problems as they are at the moment. mind you I was never going to get into the gymnastics olympic squad, but I was doing very well in my pilates class, did yoga the lot. now, I am lucky if I can pick something off the floor, knees bent, one hand supporting me. I mean how the fuck did that happen? i did alot of running which i doubt has helped either. I was physically holding my own at 40 with the best of them and now I am on the sidelines. I want to exercise again and I lose heart a bit. but slow but steady is the way to go.

You have to make a big fuss IMO.
Push for referal to consultant. I got pain management only after scans, injection and the decision that surgery could make my pelvis slightly more stable but probably wouldn't do anything for the pain.
Pain management helped hugely. Not just change in meds, but teaching me how to slowly build up exercise and live differently so I don't increase the pain. Hardest thing was to accept that I'll always have pain to some degree. But 12 years later I'm functioning better than I thought was possible. Have had a baby and am pretty much able to live life as I want.......Still got pain, but am used to it.

The spinal injury and fractured vertebrae were from an accident :-(

I would keep on and push to see a specialist and the pain team.
I still have to push for things now, I've got 'lost' in the system a few times.

Many people don't know, that people with spinal cord injuries, have bladder and bowel problems too, coz below the level of injury, whatever is controlled by the spinal cord and nerves is affected.