AIBU to think I'm being palmed off?

[Arthuritis]

I have a mixture of inflammatory and osteo arthritis affecting several large joints. In my mid 40s.

I work and do regular exercise to try and strengthen the joints.

Now being sent on a pain management course which appears to comprise of some physiotherapy (I already pay for regular physio) but mainly relaxation, pacing and mindfullness training. Looking this up, it seems that the idea is to help you accept the pain and to live with it, rather than suffer from it.

Aibu to want, actually, to have my pain eased in some way?

I've looked at pacing before - intersperse activity with periods of rest - but it doesn't fit with being at work. I can't rest whenever I want to or vary my tasks.

I also make use of heat or ice packs at home but these are impractical when I am at work or out.

Not wanting to brag, but I don't think that I manage too badly. I still work, i exercise at least 3 times a week, I do the housework but I'm in pain and tired and sometimes just long for a tablet that could take the pain away.

If pain can be taken away by changing your mindset why do we mend broken legs or replace joints? Why don't we get people to "think" away their pain?

I don't want to go on this course being a negative nelly, hence my post here. If someone has experience of it working then please tell me. Do I need to be open minded about this?

I just fear that I am being palmed rather than treat the reasons for my pain.

What sort of things? I have had an occupational health referral and they imposed some restrictions like being able to sit or stand as I need to. The store responded by moving me from my old department to check outs, which is what they said was the only department suitable for me. HR also made it quite clear that I was then expected to do the full role and if I can't I will have to leave because they can't create a job for me. I reduced my hours and now only work 5 hours day with a 15 minute break. I am at a loss as to what further adjustments I should ask for. I don't know what will make any difference.

This is why I find pacing impossible to implement at work. I just cannot set my own pace, can't change tasks, take breaks etc.

The hospital make it all sound so simple but IRL it's far more complicated. I spend so much each month on gym membership so that I can do multiple classes and on physio. I was going to do the course, figuring that I had nothing to lose by giving it a go, until they said that it was 2 days a week for 4 weeks. Now I'm questioning whether it is worth the aggravation given that I am already doing it all. The nurse said that they do yoga and pilates on the course which is good but how much help will it be to me, given that I've done both for 4 years now? Surely the classes will be at a very beginner's level.

The irony is that they encourage you to do this so that you can feel more in control and yet the things that help me ie steroid injections or pain killers are controlled by the drs. So it's just an really.

I know that I have to do it but it just feels like an extra burden right now. I wish that I could believe it would help.

For those of you that have done it did it increase your activity levels? Did it make you feel better?

Are you in a support group? When I had horrendous bladder problems/pain I found an online forum and got loads of advice which really helped me manage it.
There was stuff about diet, alternate treatments, loads of different things.
I found the support helped in so many ways - I wasn't alone, I had new things to try and coping strategies to look at, and I realised that there were many people worse off than me - so oddly I ended up feeling grateful life wasn't so bad!
There is so much knowledge in these communities - it might be worth a look if you haven't already.

I look regularly at Arthritis UK and I am a member of a support group on Facebook.

Honestly, I think that I "get" all of the advice. I understand about chronic pain, how the nervous system gets into a constant state of high alert, I understand pacing and avoiding boom and bust, I understand the spoon theory, I see how being active and socialising can help to alleviate pain and lift mood. I get it. I do all of it, some bits better than others. I exercise, I work, I volunteer, I see friends and family. But I do all of this with pain. It impacts on things. So I can't go on long walks anymore or rather I could but it would hurt more and more as I went on. I get very uncomfortable if I have to stand up for too long and also if I have to sit for too long. I try to build this in when I am planning on doing something but then is the unwillingness to avoid long walks, because the arthritis has fused my toes and destroyed the fat pad on the ball of my foot and eroded all of the cartilage in my knee, avoidance? Should I actually be doing this more? Would that reduce my pain levels?

Whenever you read about programmes they cite examples of musculoskeletal pain or lower back pain. They don't talk about people with on going current illness and it is all centred around the psychology of pain. I would actually benefit from someone watching me go up and down stairs and trying to correct my technique so that I can reduce the load on the most painful part of my joint. Practical things like that would help me. I have researched, I've read books, I've spoken to physios. Honestly, this feels like a tick box exercise. I have to wait ages to go on it, it won't teach me anything that I don't already do but it will cost me either 2 weeks wages or 2 weeks holiday but they can say that I've done it.

If they really want me to self manage give me the tools to do it. Give me a flexible and adaptable drug regime so that if the pain is less I can take less medication. If it's worse I can take more. One silly example. I have co codamol tablets. If I have pain I might think I could take paracetamol and see if that is enough. But if it isn't I can't take co codamol because it contains paracetamol so I either have to wait 4 hours or take the co codamol at the outset. If I had paracetamol plus codeine tablets I could step up myself. If I had different strengths even of co codamol I could take 1 x 15mg plus 1 x 8mg, or a 30 and 15, or 30 and 8 depending on the pain but they make it all or nothing.

I can see how, if time and money were no barrier, you could manage pain reasonably well using exercise, relaxation, hydrotherapy, massage, accupuncture etc but how many of us have that luxury?

Have been having a good think about what you have all said.

I think I must not be understanding this process. So, I understand pacing is trying to even out activity so that you don't make up for bad days y over exerting yourself on good days and I think that I do this. I know that if after I've been to work I come home and do the ironing or housework that I will hurt more. So I will try to do only what I have to do. Likewise with fun activities - I try to avoid lots of walking or standing or sitting and try to break it up, 30 mins max sitting, same walking and about 10 mins standing still. Why then does this feel like the illness is ruling my life ie I can't do what I want because I have to consider this? Then they talk about the PMP as accepting but also not avoiding and then I am totally confused.

Do I have a mental block here or is it because I haven't done the programme that I am struggling to understand?

Following this with interest and pessimism - my rheumatologist yesterday said he was referring me to pain management - fine - but CBT for fatigue? How would that work?

I have fibromyalgia, but on the back of a couple of autoimmune things, hypermobility and occipital neuralgia. I'm really good at pain, honest, it's the fatigue that stops me doing the things I need to do to manage the pain...

There's absolutely no reason at all why you shouldn't have a range of painkillers at home. In fact, in general the NHS encourages it as it means that people stop presenting in A&E. Take me, for example. I have a tricky connective tissue disorder that causes me a lot of pain. As a result I take a medium amount of slow release morphine everyday. However, I also have bottles of liquid morphine to take as needed and instant release morphine tablets for out and about. I have permission, in theory, to double or even triple my base morphine dose without having to see a doctor-but most of time I don't need to. That's the way it should be for you. Have you seen a pain management consultant? They should be able to write you a letter stating how having a variety of pain relief at home would improve your self management.

I have constant pain too. It's been much better since actual treatment rather than being fobbed off with painkillers and physio, but the pain is still there. It flares up every now and then and I do think having techniques to refocus and distract from the pain can be helpful. But it sounds like you have that down already.

When I got to the point of losing most of my normal life due to the pain and limitations, and I was still getting worse I was desperate and started reading all the hippy alternative stuff. Some of the things that did help were an amazing and patient osteopath, golden milk aka turmeric and a dairy, gluten and sugar free diet. I tried all sorts that others swear by, like CBD oil, high fat diet, omega oils, massage, physio (NHS and private), acupuncture, swimming, pilates... lots more. None of these made any difference for me, with some making the pain worse or causing other issues.

Cost vs effect wise the best two things were osteopath (not cheap but bloody worth it, just for an hour or two of little pain and ease of movement), and turmeric (cheap but even helped my dog, so not just placebo effect).

Might be hippy and alternative but I'd examine your diet and look at supplements.

I am also a chronic pain sufferer. I've had several conditions since childhood, so kind of an old hand. I can't work & am on enough meds to fell an elephant. I literally have to plan everything around pain meds.

I have been on several of these courses. They're basically mainly CBT & mindfulness with a bit of teaching your granny to suck eggs common sense thrown in. I didn't find the content useful at all, but I did meet some lovely people, so I'm sorry to hear you can't manage to go. Its a bit much expecting anyone to take 2 days a week to sit on a hard chair & listen to someone who hasn't got the faintest idea bang on about ways to train your mind to think away the pain! Ask if you can be informed of any evening classes they may do in the future. Sounds to me like you're doing everything you can though & managing really well at the moment.

@unweavedrainbow I have seen a pain management consultant. I also have hypermobility syndrome. Started me on an anti inflammatory but the side effects are becoming difficult - I have crohns disease and it seems to be flaring that and it's also causing my BP to go up (having it monitored at GPs). When I asked the nurse what my options are if I have to stop this anti inflammatory she said "nothing". If I can get my gastro consultant to contact my pain management consultant he might consider offering something else. Not easy though - different hospitals in different health authorities and I am still waiting for a clinic letter from this time last year.

I get that the NHS is on it's knees and that people needing life saving treatments aren't getting them but this is just so draining. I asked the nurse how I was meant to manage between now and next year when the next available course is and she said that I need to learn to live for today, focus on getting through today and not think about tomorrow or next week. As I explained, this isn't like a headache where you know you will wake up tomorrow and it will be gone. How do you not think about tomorrow, particularly when I'm meant to pace my activity across the week.

Honestly, if these programmes were run by people with experience of chronic pain then I would have more faith but it feels like they are reading from a script with no real understanding of what this feels like.

The thing is, I did 3 weeks inpatient (!) doing a not massively dissimilar course (CBT, mindfulness + intensive specialised physio) at the Royal National Orthopaedic in London and I found it hugely helpful. The difference is, I think, that a) they didn't expect me to stop taking my painkillers and b) I'm much lower functioning than you-came in a wheelchair and went home in a wheelchair. Also it wasn't just psychbabble. There was a lot of rather hardcore physio. It was NHS but there was quite a bit of hoop jumping to get there.

@Arthuritis Have you tried any opiates other than codeine? Some people find they get on with tramadol more and a GP can usually prescribe it without input from a consultant. In terms of painkillers, it really is better to take something round the clock rather than waiting till it hurts. The painkiller builds up to a therapeutic level in the blood and so you don't get the "peaks and troughs". Pain management works by increasing the medication to a level where the pain it bearable- I wouldn't worry too much about them stopping working, morphine has a very high ceiling. All the nonsense about pacing and mindfulness has to come in AFTER someone has adequate pain management, to try and stop flare ups and get some quality of life that. However, if painkillers make you feel woozy and you work I get why you wouldn't want to take them all the time. It's worth a bit of trial and error though.

I have had tramadol in the past for another condition. It doesn't make me feel sick in the way that codeine does but it's also not something that I want to take regularly.

I don't know what my options are now. My gp won't prescribe pain relief without input from pain management and as far as I can tell I won't be seen by them again until this course.

I'm going to look more at some of the diets and supplements mentioned on here. I can't see an osteopath sadly as years of steroid treatment for crohns has left me with osteopaenia so I can't have any spinal manipulations.

I think I'd call up and ask to see the pain management consultant. Explain that even though you're open to the CBT/mindfulness, your financial situation doesn't permit you to take the time off work. However, it would help if, as an interim measure, you could see the consultant for a medication review as a matter of urgency, because your pain levels are regularly at X/10 and it's not a sustainable situation. If need be, get PALS on board to help.

Once they have got you on some decent painkillers, you can start thinking about the rest. The team where I was in London had an occupational therapist who tried to help me manage my time. This meant writing out a weekly planner in which I had a maximum of 45 hours for the week for work, chores, socialising, etc. The rest was to be resting or doing things that were just for my own pleasure. I was possibly further down the loss of identity path than you, because of other issues I have, but she was trying to get me to focus on managing what I could and forgiving myself for what I couldn't, both of which were hard in different ways. She was also great at checking whether I needed any equipment at home or at work which would make it easier for me to function, and giving me the stuff for free. The most useful was probably my sock slider, which I find also works on opaque tights, and which made the simple act of getting dressed just that little bit easier, but the bed bars to help me get out of bed in the morning are still useful when I'm really feeling it.

In terms of self-managing my pain meds, I have modified release morphine capsules that I take every 12 hours and which provide baseline relief. I can increase or decrease as the situation requires. In addition I have paracetamol and tramadol for breakthrough pain. Oramorph gives me gastritis, so that's what I'm left with: I can't do any kind of anti-inflammatory, even the ones with prostaglandins to protect your gut lining. That little lot mostly has me sorted for the joints and back. The fibromyalgia is another issue entirely, especially the fatigue, although the keto diet has helped stop the boom and bust with my energy levels on that, and I know others who have dropped sugar and/or carbs with similar effect.

And yes, the last weapon in my arsenal is the Curable app. It teaches a range of techniques you'd be likely to learn and I find it genuinely quite effective. Part of me still hesitates to call on it in a crisis, but actually I ought to be using it as a first line of response because anything that keeps me from ingesting yet more medication is a bonus.

Go in with an open mind. I'm generally sceptical of the idea of thinking your way out of pain, and I've had to eat my words to an extent. Let the hope we both have for some actual solution have the upper hand during the psychological approach, because that's most likely to help you benefit from it over time.

And good luck

You sound like you are at the end of your tether. And I don't blame you.
But from what you've said I would seriously be thinking about joint replacements.
I know that you can usually only have 1 revision and that the average life is 15 years, but I would be thinking about when do you need that good health? If you get the replacements tomorrow your will have a minimum of 30 years pain free active life. Longer probably as the technology is improving every year. It's all a trade off against an unknown future - but maybe it's worth thinking about?

Thank you Grumpy.

I have to check myself because I think my frustration at my situation often comes over as annoyance or frustration towards others. I don't understand how this system can work but I guess that is not to say that it doesn't work.

I'm not sure what I want from hcps. Empathy maybe? I don't know. An attempt to understand that most of us are trying realky hard and we're doing the best we can. When you are then faced with someone telling you how you should take unpaid time from work or do all of these extra things it feels like they may just as well tell me to crawl to the moon or something as equally unachievable. Treating me in isolation from family, friends and work also isn't that helpful when they are advocating you becoming, in the nicest way possible, more selfish. I think maybe they need to hear that I need to re think my role in the family, but then I don't want to keep missing out on the fun things.

I am hoping everyone on here finds some relief and thank you all for your advice and support.

I don't want to "embrace my pain" it fucking hurts and I just want it to stop.......I just can't believe the only option is to just accept it and I don't understand how that works.

I know I'm probably "teaching granny to suck eggs" here- but unfortunately, for many people with chronic pain (or conditions which lead to chronic pain) we cannot simply totally remove the pain. We can try to control the pain (with varying degrees of success) with painkillers or address inflammation causing the pain with anti-inflammatories/steroids (oral or injected) or with disease modifying drugs aimed at treated the underlying cause. The latter can sometimes slow down the progress of the disease/damage caused by the disease. But really, there is no simple "fix". If there was, we would give it to patients. I have no wish to keep someone in pain if I have an effective and safe alternative.

I am not trying to minimise your pain, nor the considerable efforts you have gone to improve matters for yourself. However, there is evidence that a significant proportion of patients suffering from chronic pain benefit from these pain management courses. One of the benefits for some, is accepting that the pain is not going to disappear and that they need to learn, to some extent, to manage their pain to have as minimal an impact as possible on their life. The courses aren't for everyone, and perhaps you are one of those. But you won't know until you've tried it.

I understand the theory of chronic pain being a sort of over reaction by your body, creating pain when the long gone painful stimulus is no longer there. But, how does this apply when the painful stimulus is there and still causing the pain? This is where I struggle to understand.

That is complex- in simple terms the principle underlying it is that the continual stimulation of the nociceptive (pain) pathways in the spinal cord and then up into the pain pathways in the brain lead to strengthening of those neural connections continually over time. This can mean that even if the painful stimuli is removed, or reduced in intensity/frequency, then even relatively low level nociceptive input can lead to a strong "reaction" in the brain, in turn leading to a perception of more severe pain than would be the case without the long-term changes caused by the chronic pain (also known as allodynia). Where there is ongoing stimuli causing pain, then this may continually "potentiate" the pain pathways- leading to up regulation of those neural connections and so increased perception of pain. It's not quite that straightforward, of course- but you get the gist.

Can you help me to understand how I can learn to let it have minimum impact on my life? I really am trying to understand but I just can't. Other than thinking I need a leap of faith are there any examples that you can show me?

Until I was told that it was 2 full days a week for 4 weeks I intended to try it and see but this will be a big deal for me to arrange. I don't know if I will even be allowed time off work, even unpaid so it feels like more of a commitment than just giving it a go.

I am worried that if this doesn't help, what then? Literally nothing? And my other worry is that I won't benefit as much because I'm already doing so much of this anyway.

@jacks11 thank you for trying to explain this to me.

Is it really likely then that 20 minutes of mindfulness a day are going to be able to overcome the on going painful stimuli from continuing this pain cycle? It just sounds to far out for me. Really, if our minds have so much control over our physical state how come we don't treat other diseases in this way?

It's quite interesting how most of the examples used in the literature cite patients with musculoskeletal lower back pain as benefitting when this has always been associated with malingering (not saying that sufferers are malingerers btw, just that this seems to be a popular opinion). I've not seen, for example, people with cancer being given as an example of someone that has benefited, but presumably the same should hold true?

My mum had one knee replaced last year and is contemplating having the other one done, though she really doesn't want it done. I have explained this concept to her and said she should give it a go. Chances are she can learn to live well with the pain. I can't repeat what she said to me. Btw, she is 75 goes to the gym twice a week, walks 8 miles a day three times a week and was walking without crutches 7 days post op.

OP- there is no guarantee it will work for you. Just as there is no guarantee any medication or surgery will work for you. It is possible you are already doing absolutely everything they might suggest.

If it doesn't help, what next? That is different for each patient- perhaps they can try alternative disease modifying medication if your inflammatory disease is still active despite the 2 medications you are already using for this. It may be possible to try alternative/additional painkillers- I don't know what you've tried already or if you have allergies/intolerable side-effects to medications other than what you've tried. There may come a point where you may benefit from surgery, such as joint replacement- though joint replacement is usually last resort as they do have a finite "shelf-life" and revisions are not usually as successful. Plus some joint replacements reduce pain but you don't always get as good function. But yes, for some people the painkillers reduce the pain, or cannot tolerate the painkillers, so never completely resolve their pain.

There is evidence that state of mind and mood can affect our experience of pain. So learning to accept it and it be "background" does help some people. A similar approach is sometimes used with tinnitus- learning to put it to the back of the mind and reduce your conscious perception of it does help some people cope more effectively with their symptoms. Not everyone, some people do not gain benefit from this approach.

Obviously, I don't know all the treatments or painkillers which you've tried- you may have exhausted all other suitable options (based on your condition, past medical history and so on) or still have some to explore- so hard to say where you could go from here.

OP- mindfullness is used as a technique for quite a few conditions- from anxiety and low mood, to tinnitus and chronic pain. It is often used in patients who are struggling to come to terms with a diagnosis of chronic disease (not necessarily pain) when they are referred to the health psychologists.

I say again- the concept does not work for everyone. It works for some, but not others.

In terms of your concerns as to how it can work if you are still experiencing a painful stimuli- that is where the "it's not completely straightforward" comes into play- the brain has all sorts of modifying inputs into your perception of pain- e.g. natural endorphins can reduce pain, and patients who are depressed, anxious or fearful can often experience more pain than the level of stimuli should suggest they feel. It's a complex interplay between different neural pathways and neurotransmitters- and we are still learning new things all the time.

I have previously tried co codamol and tramadol, in the short term. Both worked ok but codeine makes me feel really sick and tramadol scares me!! I really do not want to be on that long term.

Have been on a cox 2 inhibitor for a couple of months which has been ok but it has caused my BP to go up so I'm having that monitored and then last week I started to get quite bad stomach issues so my GP told me to stop taking it until they resolve because I have crohns disease. Interestingly, I had developed a really thumping heart beat that I could hear pulsing in my ears and my GP sent me for an ECG. That stopped about 4 days after stopping the medication and my BP is coming down, although still high for me. I'm supposing that these were side effects though whether they are a reason to stop I don't know.

The letter from pain management says that I have exhausted pharmacological options and so the PMP is offered. Maybe this is true. This might well be all that is available.

Steroid injections have helped my foot and shoulder pain but I had first lot in my foot and shoulder Jan 2017, which I paid for. Have had no more in my foot, none in my hands or knee and one in my shoulder a couple of months ago. They really work but I guess there are limits to how many I can have.

It definitely is getting harder. Walking is becoming more difficult and my knee now is so painful that going up and down stairs is very hard. I've noticed that I am starting to avoid it so now I am making myself do it but no idea if that is the right thing to do. I just don't want to lise function a little bit at a time.

I'm on a biologic. If you're offered the opportunity to have them - I'd suggest leaping at it. For me it's been life changing for several years. The RA / SA disease is still progressing, but it seemed to vanish for a while. I self inject at home, which made me mentally feel very sad and low for a while but now it's no bother at all. I was a bit unwell for the first few injections, and can still get a bit flu-like within a few minutes, so I just take it in bed as I go to sleep for the night. I'm fortunate enough to live somewhere outside the UK that funding is better, so was offered this 5k a month treatment pretty fast. I also get lidocaine patches which can be really useful. I really do count my blessings for being offered this treatment. Its given me a few years back although it seems a bit less effective now.

natural endorphins can reduce pain, and patients who are depressed, anxious or fearful can often experience more pain than the level of stimuli should suggest they feel

I don't feel depressed though. Fed up and a bit naffed off with the sheer number of appointments that I have, especially as they've used up all of my holiday, and I don't feel that much further forward. I only get pain in the joints where subsequent imaging shows that I have disease and my joints hurt mainly when I use them, apart from my foot which throbs constantly like a cartoon character that has had his thumb hit with a hammer. I might believe this more if unaffected joints hurt or they hurt all the time. I don't know. I am quite into the helpfullness of acupuncture, massage etc so I'm quite open minded.

I think I need to speak to my gp to see if I can re start the anti inflammatory and if nit what other options can they give me and then see what happens with PMP. In the meantime I'm sure the rheumatologist will change my medication so perhaps that will help. Thank you for explaining things to me. I still can't quite believe it but who knows, that might change!

I've got Fibromyalgia, ME/CFS, chronic Arthritis in my feet, ankles, knees, hips, spine, shoulders & neck. I can't manage to walk one aisle of a supermarket without being in agony, I've been to pain management twice & it was a total waste of time. The doctor actually put in the letter back to my GP that I was unsuitable for pain management as "I wanted my pain to stop" I've got to the point where I don't go to the doctor's, I dont want to waste my time & what little energy I've got traipsing backwards & forwards only to be robbed off. I've told them that the pain at times leaves me suicidal & they just ask what do I think they can do about it?

I'm basically housebound now, just simple things like getting washed & dressed wear me out for the day, I use CBD vape oil to try & reduce the amount of painkillers I take, I've been on Gabapentin, Pregablin, Amtriptyline, tramadol, Duloxitine, I've tried tens machines,physiotherapy, Chiropractors, nothing reduces the amount of pain I'm in, my energy levels are practically zero, I can't walk up a flight of stairs, get in & out the bath, I haven't worked for eight years, I had to stop because I was off sick nearly all the time. I've lost most of my friends because I never have the energy for a social life.

I honestly think that the doctors who preach all this pain is in the mind stuff have no real idea of what it is like to have to live with constant pain.