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Pain clinic - any experiences??

(21 Posts)
ItsClemFandangoCanYouHearMe Tue 24-Sep-19 12:05:55

I've just come back from a rheumatology appointment to review test results as I've had hip / knee / hand swelling and pain for several years. I've been told all is fine apart from a mechanical problem with my hip that needs an injection and I've been referred back to my GP.

My consultant advised that he's referring me to a pain clinic as it's obvious i have chronic pain but this has upset me more. He's talking about a psychologists at the clinic and now I think he feels it's in my head which it certainly isn't. I'm only 30 and feel like I'm being written off and it's devastating.

Does anyone have any experiences of pain management clinics? I can't find much information about help they can give for undiagnosed conditions. Thank you!

OP’s posts: |
DecomposingComposers Tue 24-Sep-19 12:10:52

The current push at pain clinics is to focus on self help measures - mindfulness, pacing, exercise.

Funnily enough, if you see a pain consultant privately then there are a raft of treatments offered - injections, radio frequency ablation, spinal cord stimulators etc.

To me it smacks of money saving and nothing else.

CMOTDibbler Tue 24-Sep-19 12:25:07

I have chronic pain, and the psychologist isn't there to say it is all in your head at all! But the thing is that there isn't a magic bullet for many long term pain conditions, and learning to live better with it really is the way to go as well as other treatments and learning to escalate and descalate medication etc.

I have friends that have done inpatient pain management and said it really was life changing.

ItsClemFandangoCanYouHearMe Tue 24-Sep-19 12:26:48

That's my worry to be honest. I don't see how practicing mindfulness on the days I fall down the stairs is very helpful.

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ItsClemFandangoCanYouHearMe Tue 24-Sep-19 12:29:29

@CMOTDibbler when you say live better, do you find diet and exercise works for you? I can't honestly say if I walk too far or mow the grass for instance, I'm laid up for days. I have thought about trying yoga though.

OP’s posts: |
longtompot Tue 24-Sep-19 12:37:12

My yd was told for years by her consultant that her hip pain was mechanical. Then it turns out it was actually arthritis in it, she has JIA, and now it has some damage and she is in constant pain. She had a steroid injection a few months ago which didn't help sad

My ed has been to our local pain clinic as she has CRPS, and he was understanding, but there isn't a lot they can offer her sadly.

I would go to the pain clinic. The pain is not in your head, and if you get someone who says it is, ask to see someone else.

Another place you can get referred to is Bath pain clinic. They do three week residentials to help you learn to find a way of living with the pain.

DecomposingComposers Tue 24-Sep-19 12:37:15

The way they explain it is that our pain mechanism is meant to protect the body from damage. So, if you touch something hot you feel pain and remove your hand.

In chronic pain this mechanism goes wrong and your brain continues to feel pain after the danger has gone.

The answer to this type of pain is to train your brain to ignore these signals.

So, I understand all of that BUT in many cases the painful stimulus hasn't been removed, it's still there.

So I have arthritis - some of my joints are bone on bone and that hurts. I also have a condition that means my joints dislocate. That hurts. If you watch medical programmes on TV people who dislocate a joint have morphine, entonox, sedation to put joint back in place yet somehow, for me, they seem to think that mindfulness is enough???!!!

I've done a pain management programme. Constantly, the message was "you need to pace". When I asked how do I do that at work I got told that you can't do it at work. Ok, so how do I treat the pain caused by work then? They couldn't answer it.

In my view, this is basically a case of learning to have to just put up with it and more importantly, learn to suffer in silence.

It's rubbish. How are you meant to carry on at work as though nothings happened when you've just dislocated your knee and had to put it back into place with nothing more than mindfulness for pain relief?

landgirl1 Tue 24-Sep-19 12:48:01

I went and it was horrendous, i was made to feel like a complete hypochondriac. Absolutely no positive help, desperate to dig into my very abusive past which certainly released some very dark memories leaving myMH in tatters & yet the only actual help seemed to be in learning to breathe properly? I’m nearly50, I think I’ve nailed breathing! But a word of caution, if you don’t do all the sessions then you will get dropped by the RA consultant as deemed as failing to attend even if you write to say that you can’t cope with the whole mind f&ck experience.

ItsClemFandangoCanYouHearMe Tue 24-Sep-19 12:50:07

I'm so sorry to hear these stories, it's both upsetting and justifying my feeling towards being referred there.

I know it sounds mad but all I wanted was to be told you have this condition, if you do A, B and C you will see improvement. The thought of being told practice mindfulness is making me want to scream.

I have a small child and when he wakes in the night I have to get downstairs to him. I have fallen so many times and I'm lucky not to have broken anything other than toes. Don't get me wrong, I have help from my husband but he's taken the lions share and the lack of sleep is cracking him up too so it's not fair to leave it to him. I had so much riding on this appointment today.

OP’s posts: |
DecomposingComposers Tue 24-Sep-19 12:59:15

I'm sorry to be such a negative nelly.

Lots of things do help - I do yoga and Pilates because I find strengthening and stretching do help my pain.

But nothing takes the pain away and that's what I want. I don't want to sit at work trying to appear cheerful towards the customers and pasting on a smile. I don't want to lay awake for most of the night in so much pain that I can't even turn over in bed.

Maybe if I could opt out of life and all responsibility and just focus on doing things that don't flare the pain up then I could manage with exercise and breathing but who can do that? Most of us have jobs, or children or housework etc to do. That's what I find so hard - the need to be able to treat the pain do that you can do what you have to do.

lyrebird1 Tue 24-Sep-19 20:37:04

I have neuropathic pain, and I see a pain management team. Their approach is completely holistic, so they do some psychological things (not all mindfulness) and also medication, exercise/physio and injections/infusions etc.

I thought I would hate health psychology stuff, but I found it really helpful. Not so much in dealing with the pain, but in advocating for myself, accepting help from other people and focusing on other things. I also get various injections and infusions which have helped me to cut down the medication I take.

CMOTDibbler Tue 24-Sep-19 20:51:52

By live better with pain, I mean that sometimes you have to accept that the pain won't go away and decide what in your life you will accept more pain for, when you'll take more medication to do things, and when you'll adapt how you do things to mitigate the pain.
Pain is a really complicated thing, and don't get me wrong, I'm no Pollyanna about it. In the 9 years I've had CRPS (and the life changing injury that set it off which is painful in itself) I've really wondered how I could go on and would have happily cut my arm off at times if it would actually have helped.
I saw this diagram from a pain specialist today which shows some of the complexity of pain.
Go to the pain clinic with an open mind. Try their recommendations. You never know what will help - at my very worst I could get an hour off the pain with acupuncture which I never believed in before, and some of the physio actually made me vomit it was so painful but it really did help in the longer term

DecomposingComposers Tue 24-Sep-19 21:04:35

What annoys me most about pain management is that it seems to be done on the cheap. In my area you get 8 sessions of a pain management course. What happens after that? Where do patients go for help with their pain? How do you cope with managing pain at work when medics refuse to even discuss it? Why isn't every eligible patient offered treatments like spinal cord stimulators? I have one to treat nerve pain - it is simply life changing yet other people on my course with Crps and other nerve pain have not been offered it. Didn't even know about it.

ItsClemFandangoCanYouHearMe Wed 25-Sep-19 06:28:09

Morning all. I've had time to calm down and think about this and I'm sorry for the massively negative response yesterday. I really appreciate all of the responses I've had and experiences, I have one RL experience in that my amazing bubbly larger than life SIL has this, she's now a shell of herself which is what scares me.
Don't get me wrong, she's doing amazing. She uses the spoon theory and is actually studying for her PHD (which she took up after her diagnosis) and managing it well, but it's scary when you've seen what it does to someone.

With some time to think about this, I'm always complaining something hurts. You could run a gentle finger over my skin some days and it's agony. This isn't all the time though. Maybe I've been looking for the wrong diagnosis all this time.

I think while I wait to hear about this clinic, I'll take up some yoga and look after myself a bit better. Try and get a head start.

OP’s posts: |
landgirl1 Wed 25-Sep-19 08:45:46

Good to hear you are feeling more positive this morning smile with the skin sensitivity, has anyone mentioned you may have fibromyalgia? I have had more pain relief with gabapentin to dull my overactive feeling nerves than with regular pain treatment, it’s like it turns down the voltage on the electric shock sensation!

landgirl1 Wed 25-Sep-19 08:49:50

Posted too soon! Spoon theory is a really useful one to manage tour energy, I also find constant pottering around/ being busy helps me take my mind off it as long asi don’t overdo it! I also found experimenting to find the right pillow has made a huge difference as I have crippling upper body/neck/shoulder pain. I found a pillow suitable for a side sleeper on amazon and it’s amazing how much better I feel in the morning

C8H10N4O2 Wed 25-Sep-19 09:03:46

I've been under pain clinics for a couple of decades and my early experiences were of a very holistic approach - a mix of pschological techniques, lifestyle management, physio, pain relief and some surgical intervention. The support and advice I had enabled me to continue in work (and I'm in a fairly demanding job). In particular because the team were used to working in a cross discipinary way they didn't assume outcomes and were able to combine ideas.

I believe people entering the system now don't always get this so its worth finding out what the clinic actually offers beyond mindfulness lessons(which can make things worse - don't pursue them if this happens)..

Bluntly these days of a lot of the treatments I was offered are not available on the NHS any more. If the impact merits it and you can consider the option its worth looking at what the clinic can offer privately. It shouldn't be necessary but when it makes the difference between being able to work/function and not then everything else becomes a bit moot.

DecomposingComposers Wed 25-Sep-19 11:06:33

C8H10N4O2

That's exactly my experience - very little available on the NHS but a multitude of things available privately.

lyrebird1 Wed 25-Sep-19 19:33:54

I think it may depend where you are based, because I have had great experiences with the NHS, all within the last 3 years. I am currently on the waiting list for a spinal cord stimulator, but my pain is managed well with medications and infusions in the meantime. Hopefully you will have a decent experience with one of the better teams.

I think it is great that you are feeling more positive, and are looking into yoga and self-care. My consultant told me that they move from less to more invasive options, so will begin with things like therapy and exercise, because that will help some people without risk. If you are open-minded about the psychological stuff, but are already doing a lot of the things that they recommend, it will be more difficult for them to fob you off.

Healthtalk has some experiences of NHS pain management programmes that might make you feel more prepared, as well as some general information on chronic pain.

Some CBT for chronic pain I don't know if you will find it helpful. CBT isn't my favourite, but it might help with negative thoughts. I take duloxetine and pregabalin for skin sensitivity. The GP ought to be able to help with that kind of thing.

jackparlabane Wed 25-Sep-19 19:43:30

I have hypermobility syndrome (probably EDS), plus various other conditions, and the rheumatologist referred me to the pain management course run by St Thomas's Hispital (called INPUT).

It was 6 afternoons and, once they had managed to explain to disappointed attendees that they were not there to amend medication, it was very useful, exercises on setting goals, lifestyle management (spoon theory type ideas), playing around with types of exercise, etc. Really highly recommended. I mean, obviously the pain is still shit, but I manage to do more round it and get less despressed about it.

Also having been on said course makes other medics (and PIP assessors...) take you seriously, which isn't to be sniffed at.

DecomposingComposers Wed 25-Sep-19 19:45:38

I have a spinal cord stimulator and it is fantastic. I was referred for it (on the NHS) after a procedure went wrong and caused a nerve root injury in my spine. On the pain management course that I did no one else had even heard of the SCS and it certainly hasn't been offered to them. It seems that it is strictly rationed even for people who would likely benefit from it.

I too have had duloxetine and am on pregabalin. My GP was not able to start me on either. They had to be prescribed by a pain consultant (that I had to see privately at first because the waiting time was ridiculous on the NHS).

I still can't understand how they expect people in pain to remain productive members of society - in the workforce, at home etc without decent pain relief or treatment of the cause of pain.

Many of the tools they gave us to manage pain -relaxation, mindfullness, pacing, spoon theory - just aren't applicable whilst you are at work. Rather than addressing this though they just ignored it. How is that at all helpful?

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