Chronic pain - how do you cope?

[Grockle]

I have chronic lower back pain (due to hypermobility, herniated disc & related sciatica) which doesn't seem to respond to painkillers. It hurts so much and is so wearing. If I could lie in a hot bath all day, I'd be ok but I have to go to work. I'm now on amitrypiline but that doesn't help (nor does it help me sleep which is another problem). I just don't know what to do. I've tried co-codamol, solpadol and DPs tramadol. Has anyone found anything that helps? I'm so fed up and have such a cocktail of drugs to take every day. It's making me miserable.

I've not been referred to a pain clinic so will see what the GP says next week. He's re-done my blood tests as the one to do with inflammation came back higher than it should have before. I've realised today that not only did I burn my back but I've bruised it - it's all black and blue where I was leaning hard on a fence post- the pressure really helped. It seems the only way I can reduce the pain is by causing other injuries

I'm just feeling a bit drained - constant pain, permanent tinnitus and long-term illness are exhausting. Thank you for all the advice.

www.tensmachines.co.uk/DIGI-TENS-3--NHS-No1-Tens-Machine-Dual-Channel_p_104.html

Position electrodes higher than for labour - above pants, and around area of bra strap.

You will have to play with the settings as you need pulses, set higher than for labour as well, and to have it on for at least five hours a day.

You can get a VAT exemption for these things if they are for medical/disability use.

I did mention TENS as a source of pain relief. Unfortunately it aggravates my nerve pain, but I know it helps many people.

I'm having a really bad pain day. I've had to cancel Homestart play group and also my hospital appointment to teach me self intermittent catheters (as I'm in too much pain to go out plus I'm on my period so it would be a bit messy)
My morphine supplies are running low so rang my GP for extra.
Feel so bad that I can't play with my baby boy today, I'm trying to talk to him and sing a few nursery rhymes to him.

I'm currently waiting for another spine op ( been waiting since last July). I'm hoping it will help reduce pain even if just a little.
They will be going through my abdomen and my back to get to spine. So a little nervous on recovery of a wound on my belly and my back at same time.
Plus last time I caught MRSA which led to septacaemia and also caught c. Diff at same time. So glad I survived!
Also waiting for a breast operation, Botox in my leg, then also wisdom teeth/jaw op which hopefully I will have next week.

Blimey Reeny, that all sounds dreadful.

I'm sloping in as a sufferer of comparatively pathetically low-level cp (scoliosis which has caused pain for 17 yrs, since DS1 was born).

I've just come across this on the pain support website (thanks to whoever mentioned that).

I wondered if anyone had used it -looks quite expensive but I'd cough up £200 if it's as good as the testimonials claim. Seems to have been developed in hospital as well, which makes me hope it's not just another pile of snake oil.

Whilst my pain atm is nowhere near as debilitating as anyone's here, my aim atm is to avoid any further stiffening up/wasting of muscles/grinding of bones.
To this end I spend hours on the internet each week, trying to find something to help me loosen up, lose the pain and get strong again. This, added to weekly physio sessions (not sure if they're helping but she sometimes does a deep-tissue massage which loosens up my neck/shoulder a tiny bit), plus a good 15 mins' stretching each day, means I spend as much time on this as on a particularly absorbing hobby.
Oh, and I've just bought a hypnosis download which promises to solve everything. We'll see.

I sometimes think I could produce a fantastic opus in the time spent on this unlikely.

Anyway, I've lost my train of thought now, but wanted to sympathise with all you sufferers - will think of you before I start moaning about my aches and pains in future. Best of luck.

The Acticare TSE thing comes with a 28 day money back guarantee so I'd be tempted to order it and give it a go, tbh.

Grockle, my local HomeBargains sell the heat patches instore. Might be worth a look if you live near one.

I'm currently surviving on Nefopam, 40/500 cocodamol, Naproxen and Pregablin. They don't seem to do a big lot, but as a friend said I might not be vertical without them! After 4 years and spinal injections I have finally had a full scan rather than just lower back. The lower back scan showed 2 old brakes which had healed and produced too much bone joining facet joints /nerves together. The consulatant blamed this for all my pain from my neck down and said facet joint injections would be the answer. Sadly they weren't!

The full scan showed a black disc a bit above the knackered facet joint, then protruding discs in my mid spine, topped off by another black disc in my neck.

The only thing now for me is pain management, my first appointment is the 1st June and I'm really hoping they can help. I've been sent a questionnaire by them which wasn't terribly inspiring and including questions like "what benefits do you claim?" and "to what level are you educated?" Not sure what that has to do with my perception of pain! I'm still pinning my hopes on it though as this time last year I was diagnosed with epilepsy and so can't drive or walk far. Oh joy!

Good luck asking for a referal and if your GP is a bit of a knobber try and see someone else. It's easy to put things down to mental health, but also easy to get depressd from being in constant pain and reliant on drugs.

You have been offered very good advice. I only have one thing extra to suggest and this could be utterly useless: but one, and there was only one sympathetic Gp, gave me a tablet, when my pain was at its worst, and it wasn't even a painkiller, it was like a blocker. It just stopped the message of pain actually gettting to the brain. Don't know name, but could find out name, if you really needed to know. bet others have had similar. And it really did work for me, after diclofenac and diazepan didn't.

Thank you all for the advice. I am very grateful for all suggestions.

I've tried a TENs machine in the past but hated it. Perhaps I'll try it again. Thanks for the suggestion and the link. I have now stockpiled heat patches and hot water bottles with covers. My back has been very much better this week which has been a relief. And the amitriptyline has helped me sleep which has made me feel brighter.

What an utter nightmare Reeny. I really hope your surgery helps and that you make a speedy recovery.

Hi shotgun,
Your welcome. Pain support has been a good resource for me, for advice, ideas and just talking to others on the forum.
Could you mention the TSE to your GP or specialist (or get referred to pain clinic) and ask them more about it?
I've never tried it.

Oblomov, a lot of painkillers work by blocking receptors, so I'm not sure which medication your GP gave you.

I have a worry that the Pain Clinic are going to blame my pain on me feeling down, their survey is heavily based on the psychological impact of the pain on my everyday life. And whether I let it "control" me etc and how people with chronic pain often give up and become overly sensitive to pain.

I really don't think this is me and have the scans to prove it! I still do most of the things I used to do and have to do, I just do them in pain.

The problem I have at the moment is I'm not sure that me being weepy/pissed off/short tempered/utterly vile is because I'm in pain or a side effect of any one of the drugs I take. I read on here about how people feel on Pregablin (tired/weepy) and think "oh it could be that" and then the same with my epilepsy drugs (tired weepy!) which have just been doubled and wonder if it's that. It just seems endless at the minute.

I reallly want the Pain Management to work, but at the same time worry that I'm going to have to censor what I say to them or else they will think I'm just a neurotic wreck with imaginary pain. I know that there's a high possibility of me just sitting there crying because I've had enough of the pain and everything else that's up shit creek with my useless body, and if that happens it's going to be a complete waste of everybodies time. I suppose I just need to grow a back bone, ha - the irony .

Sorry, moan over, as you were.

My DP's time at the Pain Clinic has focussed a lot on the psychological side of it - about his perception of pain and how he copes with it. That, and lots of drugs (gabapentin, tramadol, solpadol etc). They've said they can't really do anything more.

I have a similar issue with loud & permanent tinnitus. They can't do a thing to stop it but have offered me counselling to help me cope better with it. Between that and my back pain, I'm miserable. But I BET they say it is my feeling depressed that makes me feel the pain more. Not that the pain & tinnitus have contributed to me feeling depressed. It all makes me cross. I just want to feel well.

That's just what worries me, Grockle.

I don't disagree with the psychological side of it and finding strategies to cope with the pain (other than carry on, then go to bed early with lots of pills, which is what I do now.)

But I have a duff back, epilepsy and a condition in my eyes which means permanent double vision until it worsens enough for a cornea transplant, and I really think that this is what makes me feel crap. Not that feeling a bit down is causing me seizures, double vision and back pain. I went to Pain Management 4 years ago when the pain first started and without even an x ray got told it was from pregnancy and discharged. Now I have scans to prove the problems so I'm hoping for a better result.

There seem to be a lot of people who do find it helpful so I'm positve thinking myself into being one of them!

Goodness, we are a right lot aren't we? It never seems to be just one thing does it? If anyone asks how I am now I just say "yeah, I'm ok thanks". I'm sure people must think I'm a right hypochondriac (sp), but up until the last few years I have been well and intend to be well again as soon as possible.

Get yourself to the GP and ask for a referral to the Pain Clinic, if they won't do it change doctors!

Good luck.

Hi Grockle & Pantaloons,
I'm a pain clinic psychologist, thought I'd show myself in case you have any questions about the psych involvement in the pain management team - I'm happy to try to answer anything!

FWIW, of all the pain psychologists I know, none take the view that people coming to the clinic have pain as a result of emotional / psychological factors. The approach tends to be

1. living with constant severe pain is horrible and it is natural that it causes people to feel down and stressed and angry - so part of our role is to provide support to help people cope with the emotional impact.

2. we work alongside other health profs (the consultants, physios, occupational therapists) running groups (usually called Pain Managment Programmes or PMPs) which are focused on developing strategies for controlling the pain and maximising activity without causing flare ups. The psychology bit comes in throughout really. To give you an example, a lot of people really struggle with activity pacing and we look at what the obstacles might be - some might be practical - like how do you pace when you are looking after a toddler, while some are psychological - like having too high expectations of what you "should" be able to do. Hopefully while you might not be able to change the practical stuff, the psychological factors are more likely to be change-able, so addressing those can lead to you being able to make use of strategies more effectively.

3)For some people and with some pain conditions, psychological factors can make the pain worse. This is not true for everyone and wouldn't and shouldn't be assumed. In those situations, addressing the psychological stuff in therapy may cause the pain to reduce. However, the vast majority of the time the aim of psychology in pain services is not to reduce pain but to provide support and to help people implement strategies that can make the pain more controllable and life better.

HTH.

Needless to say, I would definitely advocate going to the pain clinic!

(and our questionnaires can be terrible, often there are questions we are required, by the Trust, to ask, like the ones about education, which are more about proving we provide equal access to all rather than about relevance to your pain. But, aside from those, they can give us really useful information, taken alongside what people tell us)

Spink, I really appreciate you taking the time to reply and actually feel a lot more positive about going having read your post. I think it was the questionnaire more than anything that filled me with dread as it seems to go round in circles, and I worried about making myself seem like a fruit loop or contradiciting myself (me, over think things? Never.) I just don't want to waste the opportunity I suppose, as it is a bit of a last chance saloon type thing isn't it? And as many of us do, I have a tendency to play down things rather than risk sounding like a whinger (apart from on here of course!) and I know I must lay all my cards on the table which is quite a hard thing to do isn't it?

Thanks again for the reassurance, I will go in with a more positive attitude to the whole thing and am sure this will help make a difference.

Yes, thank you Spink. What a positive and helpful post, much appreciated.

Pantaloon - I always say 'I'm fine thanks' as well. It's easier than launching into a monologue about all my gripes and no-one wants to hear 'I feel shit but thanks for asking' I hope the pain clinic is helpful for you.

I'm back to the GP tomorrow. If I feel the same tomorrow as I do now, I shall just sit on the floor and sob. Which doesn't help anyone.

You say it doesn't help grockle, but maybe that's what the gp needs to see? That you are literally at the end of your tether with the pain and he/she needs to do something to help you.

I really hope you get on better tomorrow than in the past. Good luck!

Right, I saw Gp. And left with a referral to phsyio (last year's discharge paper said I'd been discharged because my work makes it pointless), an offer of more of the same meds - I declined because nothing has helped - and a referral to the mental health team

Well worth the visit then!

What did they say about Pain Management? It was one of the first things my GP suggested to me once surgery was no longer an option and it was a GP who referred me in the first place 4 years ago.

Will physio be able to refer you to the Pain Clinic do you think? Or maybe once you have spoken to Mental Health they might see that it's help with pain you really need and refer you on?

I'm sorry it seems to have been a waste of time on the pain front, it's really disappointing to have what you want planned out in your head only to be let down.

aw, Grockle, sounds like that was disappointing. Well - good on you for going and asking for help.

Did your GP say why s/he was going for those options instead of making a pain management referral?
I guess the only thing that I wondered was whether you have a local pain team - not all areas have them. If that is the case, the GP is likely to have to demonstrate all local options have been tried before they can make an out of area referral. If not, like pantaloons said, the physio / MH team might be able to refer you on to the pain team..

Having said that, don't write off the physio / MH referral just yet - it might be that the physio you see this time has more experience with chronic pain and takes a different approach to the last one, and maybe the mental health team can provide some support?

He didn't say anything about pain management - just offered me more codeine & amitriptyline but there's no point me taking them if they don't help. He said physio was worth another try so we'll see. I've been awake since 4.30 with my lower back sort of cramping - spasms? It hurts but I think I must just be a wuss & need to stop moaning about it. There is clearly nothing wrong - my blood tests came back fine.

Would it be worth trying different tablets to help with the spasms? There must be something to help more than the options you have already tried.

Just because there's nothing on the bloods it doesn't mean you are not in pain. I have only had bloods taken once and that was to rule anything rhuematic (sp?) out. Which it did.

As Spink says you might be luckier with Physio this time, at least they might have some idea of different treatment options.

Don't stop moaning, hopefully someone will listen eventually!

Thank you pantaloons. It's awful today & I feel like going back & shouting at him. I'm hobbling about with sciatica too. I don't want to live my life in pain & it's making me feel quite angry (hence referral to MH people perhaps ) if I weren't in eye-watering, making me cry pain every fucking day, I might not be so bloody irritable & depressed