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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

AIBU to think I'm being palmed off?

116 replies

Arthuritis · 24/06/2018 09:46

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.

OP posts:
riviana · 04/07/2018 08:05

I'm sorry if your already taking one, and I'm pointing out the bleeding obvious, but has your Rheumatologist suggested a biologic? Or is that what you mean when you refer to immunosuppressants - I was thinking in terms of Methotrexate as an immunosuppressant.

I have found the biologics to be life changing. Obviously, though, they cannot help with damage already caused (hence my double knee replacement) but it made and enormous difference to my other joints and their inflamation.

Ollivander84 · 04/07/2018 08:14

I'm active and work FT as well as a PT time and have my first pain management appointment soon
My pain is from cauda equina (had surgery), and also the meds I take give me excruciating bone pain. Will see what they suggest
I prioritise work over social stuff because I have two jobs and need to keep them both so I get where you are coming from

IJustLostTheGame · 04/07/2018 08:17

I found it bunkum and I was palmed off onto it.
I have a lot of scar tissue around a healed disc in my spine. Sometimes it swells and it is agony for weeks/months.
To begin with I thought it might help as hypnobirthing really worked for me.
It didn't. It was poppycock.
But now my GP won't help at all because I stopped going to pain management as like people suggested, I don't want to embrace it I want it to stop. I want some sleep. I want to be able to bend to put my shoes on. I want to be able to climb stairs.
I've been completely written off and it's my fault.
I stopped going to be lectured on how it's all in my head, and its essentially my fault it continues to hurt because I've got the wrong mindset. And now it's my fault because I haven't learnt how to cope stop bothering the doctors.
Its a cop out victim blaming service for the NHS.
Your pain? Your fault. Your problem.

Arthuritis · 04/07/2018 08:24

@riviana I a m currently taking both methotrexate and sulfasalazine but at my last appointment the dr did suggest thinking about a biologic. We are going to discuss it more at my next appointment in August. I'm really struggling I think with the intrusion into my life. Does that make any sense? Every week I seem to have medical appointments, then Friday I take the methotrexate, spend Saturday feeling like I have the hangover from hell plus the constant background pain. Work are starting to raise an eyebrow every time I go in with yet another request for a day off. Starting the biologic worries me because isn't that administered in hospital? I know I'm wishing for the moon but I just want to be able to take a tablet and then get on with my normal day. Thank you so much for the suggestion. I will consider it.

@Zoflorabore I really feel for you and so recognise that feeling of just wanting one day of no pain. It exhausts me just getting through each day and I don't want to feel like that. I'm scared that little by little my life is being eroded. I don't want to keep making compromises. I know I sound like a toddler, stamping my foot but I'm scared to accept because it feels like giving in. I'm scared that this is the slippery slope that eventually leads to me being housebound, no job, no friends. That is what terrifies me about accepting the pain. Right now, being stubborn and fighting means I keep going.

OP posts:
Arthuritis · 04/07/2018 08:28

@IJustLostTheGame your post really resonates with me. I am scared that if I don't go they won't help me but I honestly cannot see what I will learn there that I'm not already doing and I feel exactly like I am being blamed for having pain, despite my scans showing exactly what the problem is.

I'm sorry that so many of us are in the same boat.

OP posts:
Greyponcho · 04/07/2018 08:31

I think I am still in the denial/fighting it phase. I am not ready to accept that this is my life and to learn to live with it.

Im sorry you’re going through this pain.
Part of the aims of the pain clinic is to help you with this, to help you find your own ‘new normal’.

Of course none of us want chronic pain, and sometimes they can’t help us to reduce the pain but instead to help us to recognise in ourselves all the different facets of our lives that it influences. To explore how it influences them and whether we can make the impact less.
Pacing is important though, and goes hand in hand with evaluating our priorities. One task we did was identify what proportion of each day we spend doing thing things we need to do, want to do and don’t want to do. It’s scary how much time we waste on the latter.

Is there a reason you’re using annual leave for medical appointments?

Greyponcho · 04/07/2018 08:32

P.s acceptance doesn’t mean submitting to it - quite the opposite!!

HeckyPeck · 04/07/2018 08:35

I have chronic pain. I avoid painkillers wherever possible as I'm still young. I haven't been offered a pain clinic. Like a PP used some mindfulness videos from YouTube and it has helped a lot. The cause of the pain is still there, but it hurts a hell of a lot less. Before trying them I'd given up activities I liked doing and now I'm back doing them again. I did pay for a private consultation to check that doing them wouldn't cause further damage as that was something I worried abou too.

You'd asked before if you're at work and need to use mindfulness would you have to stop work. It doesn't work like that for me. I did a lot of practice at home and it now only takes a couple of seconds to recenter myself at work so it might be worth a try.

For me anyway it's not about accepting the pain, I thought about it a short trying everything I could to not have to accept the pain.

There's nothing for you to lose by trying the mindfulness for pain videos. It's free and you can do them in your own time.

HeckyPeck · 04/07/2018 08:36

That should have said thought about it as

GraffitiArtistTV · 04/07/2018 08:40

I have chronic pain and am really fucking offended at the comment that pain is created in the brain.
Is that you MIL?

ScienceIsTruth · 04/07/2018 09:06

I've got rheumatoid arthritis, osteoarthritis, fibromyalgia and my spine is basically crumbling away. All triggered by an accident many years ago. Pain is shit. I wake up in pain, can't sleep more than a few hours a night due to the pain and I can't live the life I wanted because of it.

I've been on permanent morphine patches for almost 10 years, alongside normal pain relief, amitriptyline for night time suppression of pain and, atm, I'm also on a biological drug to suppress my immune system.

I don't work, I tried but couldn't cope with the pain (& it's why I ended up on morphine in the 1st place), but I try to keep active by doing what I can.

I have to pace myself all the time, eg, can't go shopping and do something else that day, inc housework. Each housework task has to be spread out over the day/week, eg, vacuuming downstairs takes me all day as I have to rest after each room, and if I've been busy the day before then I can't manage it.

Tbh, I push myself just to get out of bed most days. I have dc so I have to just get on with it and I tell myself that things could be a lot worse, but because I just get on with things people don't always realise just how much I'm struggling. I often wish they could spend a day in my shoes so they knew exactly what I go through.

I've tried several pain management things that haven't worked for me, but that doesn't mean that they won't work for you.

Although, tbh, I think anyone who lives with chronic pain already paces themselves and employs mind over matter in order to get on with things. We'd all stay in bed otherwise!

If there's something I really want to do, I'll do it, and just accept that I'll be bedridden for a few days or more afterwards. I don't think my life would be worth living if I didn't, as I've previously tried avoiding making the pain worse and just basically spent every day in bed, which lead to a deep depression, and didn't make the pain any less anyway.

ScienceIsTruth · 04/07/2018 09:06

Oh, sorry for going on so long, I didn't realise!

M3lon · 04/07/2018 09:12

imagine you were suffering from an illness which is 100% in your brain (a mental illness), and how annoying it must be to know for certain that its all in your head but be unable to do anything about it!

The fact that some part of what you are experiencing might be under control of your mind ought to be a good thing as it implies there is still a potentially untried avenue for success.

The bad news is its harder to change your mind than your body sometimes.

Having watched DD recovering from a skin issue I can see that she has gone from screaming with pain when we take her bandages off to not really noticing.

The difference is she was scared/resentful/upset and utterly focused on the process initially. Now she isn't. The pain was real, but went from important to not important.

Obviously this is a trivial example in comparison to chronic pain in adults, but the science is sound.

GlitterNails · 04/07/2018 09:15

I did this course and found it quite frustrating too. I have a degenerative condition where some of the pain is active injuries/new problems and the rest is constant pain in certain areas. So I found the whole course was that the pain isn’t ‘real’ so push through it and keep exercising etc and I found this really damaging as that is not the case for my condition. Pushing too far causes a hell of a lot of problems short and long term.

I did the course when I was working and found pacing impossible too. What I did take away is that’s its important not to push too hard on a better day because you’ll pay for it afterwards. I’m unable to work now but I have my own form of pacing naturally without sticking to timings etc.

I’ve been seeing doctors for quite some time about pain - over half my life, and nothing at all has changed. No new treatments, no new suggestions and for the condition I have no new research or treatment at all. All the same.

And while I understand there is no cure there is a part of me who gets so exhausted with the total emphasis on self-management and would love to say that all I have ever done is self-manage. Can the NHS manage some of it please for awhile, even 10%? I’m just so utterly exhausted.

I think also as you’ve already expressed that because the emphasis is on self-management and having the right mental attitude it can unintentionally push the blame onto us.

GabriellaMontez · 04/07/2018 09:17

Some people find these courses very helpful. You sound stressed and I don't blame you but what do you have to lose? Even if you only learn a couple of things it won't be wasted. It's only a few days out if your life.

Can you take it as medical appointments?

mountains Some physios have mindfulness qualifications. Obviously their education is not limited to their degree course.

GlitterNails · 04/07/2018 09:17

I saw someone say above they hadn’t been offered a pain management course. In the whole time I’ve been under the NHS for my condition I’ve never actually been ‘offered’ anything. Even with a good GP I’ve always had to say I’ve heard hydrotherapy is available, or that there is a pain management course or whatever can you refer me please?

You have to be quite direct a lot of the time!

ScienceIsTruth · 04/07/2018 09:23

I have a new, young consultant who said that he thinks the pain is just in my head, (even though previous x rays,etc, show bone damage, etc), and that I should just try harder and be more active. I came out of that appt and burst into tears.

GrumpyInsomniac · 04/07/2018 10:07

Ah OP, I could have written your post two years ago. First of all, I've taken biologics: both Humira and Stelara. After the first dose, where they show you how to administer it in hospital, you do your injections at home, so no need for time off to take it.

I'm no longer on biologics despite having been in flare when we moved house earlier this year, because I inadvertently put myself in remission by going on a ketogenic diet to lose some weight. Turns out that the main ketone released has been discovered to reduce inflammation, and there is a current clinical study into RA patients to see if it helps. I have psoriatic arthritis, so we get the studies and the treatment later, but it's made a big difference. I still have osteo from the damage done to my joints while the inflammation was active, however.

This time last year I was running my own business and had been for some years. The work was often physical, and I also felt unable to stop work, or give up work, or even attend appointments at certain times because I had a business to run, staff who depended on me and a child to raise. I was self-employed and had no safety net, which no health professional I've ever met has truly understood.

I was also referred to pain management. The consultant reviewed my pain meds and sent my GP a letter with prescription recommendations - I take a lot of morphine, now, but it helps - as well as signing me up for psychological therapy.

I was sceptical about the psychological stuff, but fortunate that I was sent for individual sessions because it meant I could have a more in-depth conversation. As I was told, recent studies have shown that when you've been in pain so long, your body gets really good at telling you you're in pain, often to a greater degree than you might actually be. The way the mindfulness etc works is to retrain your brain into deprioritising pain signals.

In the end, I had to close my business, because I simply wasn't physically well enough to keep going, and the physical side of it meant I was still making my physical condition worse. It meant we would lose our home, which came with the shop. We moved 200 miles north of London and started again. I had always sworn this was impossible for me to do. And I won't lie, it wasn't easy.

What I have learned is that running a business or just doing a job with a chunk of responsibility is stressful. It is doubly so when you add in the chronic pain, because the pain acts as an amplifier. And the stress amplifies the pain. It's a vicious circle.

I've had no choice but to just look after myself. Between the back, the arthritis and my fibromyalgia I can't work reliably enough to even take on freelance work. And so I've been spending time on trying to get well. Swimming, light gym work, walking what little I can. 20m slowly on crutches to the village shop is still 20m.

I've also signed up for the Curable app, which takes you through a lot of the mindfulness stuff, but in your own time so you don't have to miss work. And this time I have found it effective. It's not that I don't feel pain any more, it's just that I feel now that I'm in control again. And that allows me to bear it and feel it less. I still struggle massively with the fatigue from my fibromyalgia and the associated brain fog, and there are still some days where it's all unbearable. And it's the days I feel least like a 10 minute meditation that I actually need it the most, because it takes me out of the stress cycle that amps everything up.

If giving up your job is not an option - and that's fine, I get that - at the very least I would be considering talking to your employer about how your disability can be managed and what can be put in place to help. If they're raising eyebrows about you taking AL to attend appointments, I think it's important to state the disability for your own protection, and talk to them about measures that would help. Explain how often you're likely to need to attend an appointment and arrange to either go in to work for the rest of the day, or work from home so you don't miss the day. Maybe reduce your hours so you can rest more, or ask for access to a quiet space so you can take 15 minutes to get yourself back on track on a bad day. Or for the option to work from home when the commute would cause you to be unproductive because you're in flare. Reasonable adjustments for disability are fine to ask for. And while it's hard to think of yourself as disabled, and I had a major wobble the first time someone suggested I was, it did help me to be able to realise that it wasn't my fault and didn't make me a bad person that I wasn't physically able to do as much any more.

Sorry. I feel like I've waffled on forever here. I'd really recommend Curable, especially if you can't get the time off work to do the pain management course, and if you do have a tool like that you can at least show the medics that you're taking their advice, but in a way that works round your other commitments.

By all means PM me if you've any questions - I'm a bit sporadic in my use of MN because of the brain fog, but I do get notifications for messages and am happy to help if I can Flowers

Allergictoironing · 04/07/2018 10:22

Though I am nowhere as badly off as some of you on this thread, I do understand. Various spinal problems (facet joint arthritis, bulging discs, misplaced vertebra etc) and one leg slightly shorter than the other due to an accident which probably caused some of the issues, and twists my pelvis out of position. Each condition on it's own isn't that bad, but everything impacts and exacerbates the others so the cumulative effect is much more than would be normal for any of them.

Nearly all the very limited options offered by the doctors seem to involve drugs that affect my thinking e.g. amitriptyline makes me totally unable to think properly. I have spent many years trying different options that my GP has sent me on; various physio appointments including back pain management classes (daytime on weekdays), acupuncture (used to help, no longer does), exercises, different drugs. One pain clinic it was "try these drugs; oh they don't work, oh well take co-codamol & go away". I've finally been referred to injections in the nerves in my back, 22 weeks between seeing the consultant and the procedure but at least the new pain clinic have offered this (why didn't the other one?).

One thing that one GP said to me is that they have a list of things they need to go through in order before they can suggest other treatments e.g. physio before pain clinic, then drugs before procedures. If you try to skip any steps you have to go back to the start and you need to show that one step doesn't work before you can try the next one.

I think we can all agree that it's preferable to put health before other aspects of life, but not everyone can afford to base their whole life around their pain. I need to work, I can't afford not to and my condition isn't quite bad enough to get any benefits help. I've gone from £45-50k jobs in London (train commute), to £20-25k local jobs (short drive) to working from home in a part time role (can at least pace myself across the day/evening and the week, and move about as & when needed). I very much need to be sharp and "with it" mentally, so any drugs that affect my thought processes aren't practical for me. So I've compromised in lifestyle as far as I can without making me (and the cats) homeless.

Didiplanthis · 04/07/2018 10:31

Not trying to be antagonistic as I know you are all really suffering but if the pain killers give you side effects and you can't take them or they don't work what do you expect the dr to do ? There are so many medications out there and many are not suitable long term. They can't give you something that doesn't exist. If there was a magic pill available I'm sure they would rather you had it too ? I think they are trying to offer something when the pharmaceutical options don't work ?

Tawdrylocalbrouhaha · 04/07/2018 10:37

I worked on one of these courses (in Wales) years ago. There is no implication that the participants pain is not real, but if you get a place on such a course it usually means that your pain is chronic, your medical team do not have the means to make it go away, and that you will have to live with some level of pain rather than being fully "cured".

So, alongside whatever medical/surgical treatments are/become available, your quality of life will to some extent be determined by how you manage your pain. These courses can be really effective but it depends on the quality of the training (if it is really just focused on chasing people back to work this is unlikely to be great), and also on the willingness of the participants to engage.

If you are solely focused on having your pain treated/eased by medical/surgical treatment, the course is unlikely to be useful. However it is certainly possible to practice relaxation, mindfulness etc alongside working - most people do.

GrumpyInsomniac · 04/07/2018 10:47

@didiplanthis I accept that wanting to be completely free of pain is unrealistic for me in my circumstances. But there's a long way from manageable pain you can shuffle along with and the kind of pain some of us experience.

Different people respond to different things. Rheumatologists aren't experts in pain management or pain relief, so don't necessarily have access to the latest research or treatments, GPs may often not be able to prescribe things unless advised so to do by a relevant consultant etc, either legitimately or because they're operating in an area where there are high levels of drug abuse and so the practice comes up with guidelines to prevent the GP being pressured. The latter was the case of my GP in central London: as soon as the pain management consultant said I should be given buprenorphine patches to try, or modified release morphine if I didn't tolerate the patches, he was able to prescribe what I needed.

And this is what makes it so difficult. It takes trial and error to find the right thing. And I can tell you, the prospect of being in your forties and having to give up work when you are used to earning a living, having a purpose and being productive is bloody terrifying. I literally couldn't imagine giving up work and accepting the next forty years of my life would be filled with unbearable pain. Who would voluntarily sign up for that?

And so we hope that the doctor will have something else we can try. That there may be a clinical study we can join and an experimental treatment might bring relief. That we are not condemned to the rest of our lives in pain, because we're not saints and that sounds fucking horrible. It's human nature to hope, and to use that hope to keep trudging on, day by day.

My life has been irrevocably changed by the pain and loss of mobility. This was never the game plan. This is not what I wanted. And now I'm trying to live with that, miles from my friends and family, trying to rebuild a life, make new friends, get as well as I can be and raise my son as a single parent during the week while my husband continues working in London to provide for us all. And don't get me started on how I feel about being financially dependent on him. He has no problem with that, and he's been amazing. I am despite everything ridiculously lucky in that regard.

Other people do not have that option. And if they lose hope, what's left?

Fintress · 04/07/2018 11:14

Turns out that the main ketone released has been discovered to reduce inflammation, and there is a current clinical study into RA patients to see if it helps.

This is really interesting as I have found that when I fast, eg pre op I feel fantastic the next day. Unfortunately unless I'm forced to, I like food too much.

Re psychological thing. I remember being admitted to hospital, totally incapacitated and in incredible pain, painkillers did nothing to ease it, I had a much longed for newborn baby I couldn't even pick up, I was so depressed. The consultant was quite blunt and said she had no idea how much better I would get. I'd had a few joint injections, nothing worked.

On the day I was discharged a beautiful young woman was being admitted, glowing with health. She came over to me and said she was me 5 years in the past. She told me, hard though it was, to adopt a positive outlook on life, I would get much better. It took me 6 months of crying every day to realise she was right. She will never know the effect she had on me, I'm very grateful to her. It took about 10 months for me to get on an even keel, accept my condition and the meds to work. No, it hasn't been easy but having seen a 5 year old child in dreadful pain at one of my clinics made me realise how lucky I was.

Arthuritis · 04/07/2018 11:22

@GrumpyInsomniac thank you! Your post sums up exactly how I feel.

I have asked for reasonable adjustments at work and they have given as much as they are prepared to. I have to use either AL or take time unpaid for hospital appointments. I work in a supermarket so no option to work from home.

Thank you all for your advice. I do mindfullness already but will look at youtube.

OP posts:
Ariela · 04/07/2018 12:08

Does your supermarket have anything available through their employee benefits/HR? (Surely in their best interests to have staff that are well)