RA not being taken seriously

I need to rant, so thank you in advance for anyone who is listening.

I had keyhole jaw surgery on Tuesday and I'm still feeling quite fragile and emotional. It was my second orthopaedic operation and my fourth operation in total since my RA onset. Prior to each surgery, everyone was made aware that I live in chronic pain, I am used to taking certain types of pain relief and therefore, I need careful pain management post-op. Each time, I have been promised a proper pain management regime. However, it was another complete failure and a slow, hideous recovery. I ended up discharging myself early because they kept offering paracetamol and ibruprofen, despite being told that I was in an RA flare and that even my usual meds of naproxen and co-codamol (30/500mg) weren't easing my 'normal' pain, let alone the surgical pain. I've been in 3 different hospitals, under 3 different consultants and still, I've had the same outcome. I don't expect the general public to know that it's not "just arthritis" but I do expect more of the medical community. Am I hoping for too much?

I don't know if it's just me but I've seen quite a few throwaway comments about RA 'only' being synovitis and joint problems. Perhaps I'm feeling super sensitive but it is quite hurtful to have it brushed off in this way especially as it's not even correct. I'm not trying to 'one up' anyone and I shan't list what RA can do to a body and what it has done to mine but I wish people would consider others' feelings.

I hate what RA has done to my physical health and I hate what it's doing to my emotional health. I thought it would get easier after 6 years but as it turns out, it's still really hard. :(

22 Replies

  • Hiya, try not to take things to heart, these people who throw these comments are just ignorant and they don't have RA, we know how we hurt so very much and 99% of doctors understand us too. Sod the rest of them lol.

    Please take care and remember there's lots and lots on here that understand.


  • It doesn't get any better after 13 years darling. I have been lucky when i have been in hospital,they have taken care of me.I haven't surgery like you have on your jaw.You need to complain to your hospital about your care.Hugs from me.xxxx

  • Hope you are feeling a bit stronger today xx

  • That's crazy - giving someone less pain relief after surgery than before. Next time (and I hope for your sake there isn't a next time) I'd ask to see the prescription chart for pain relief written up at the pre-op check.

  • It sounds to me that you need a meeting with rheumy. Pain suggests (sorry this is obvious) that ra isn't under control. What have you been given in shape of dmards or biologics? Pain is such a terrible thing and no one else can really know how you feel xx

  • I'm really sorry to hear that you have had such poor pain control. I have been much more fortunate - each time i have had an operation, the anaesthetist has taken the time to discuss my current management and has been able to assure me that I will be pain free afterwards - and it has been excellent pain control (although making me feel very spaced out and emotional!). It can be done and should be.

    I feel that you should write to the surgeon and ask him/her to take it up with the anaesthetic team, and perhaps his junior staff. If you do so, be as factual as you can, so that he/she has something concrete to examine.

  • Poor you. I am lucky, my RA is under control. However I was thrown from a horse last year and broke several bones, I was given 4 different types of pain relief, the strongest being morphine and it was kept more or less under control. You need to complain to someone high up in the organisation about this. This type of treatment is inexcusable.

  • Hang in there Crashdoll!


    What in particular got your RA under control? Thanks.

  • This is awful I hope things work out for you soon xx

  • I know just what you mean. I had a dislocated ankle and broken leg that needed pins, screws and plates. My hubby was told 2 hours for op. It took 4 hours as the other 2 hours were taken up getting my pain under control in recovery. They did a better job of pain relief on my second op. Hope you are ok now.


  • I am so sorry you are in so much pain, I've had lots of operations (joint replacements etc) and the pain has been very well managed after each of them. My sister, who is a nurse, says that there is no need for anyone to be in so much pain after an op and that there is a specialist pain management team who should be dealing. Hope things improve soon XX

  • I also think that medical staff, nurses etc, aren't fully aware of what RA is and just how badly it affects us.

  • Perhaps we should include in our hospital overnight bag a wad of RD leaflets to dish out to the ill informed. As a nurse it really saddens me to hear about such ignorance. Health professionals cannot know about every condition in the world but they should at least try to learn from the patient who is a knowledgeable expert.

  • It's an unfortunate fact of life that most professionals don't appreciate that non-profs. or patients can know something better than they can. Some do and are willing to listen and learn. Others don't and aren't. I hope you find yours will listen and learn and help you.

  • I have only had Ra for a matter of months and it has been nasty. I can only imagine what it must be like for you. My thoughts are with you.


  • I am so sorry that you had to cope with such dreadful treatment, it's unforgivable. I have had 4 operations in the last 8 years, and on the whole have been very fortunate, th pain relief has been good.

    When you are feeling a bit better and settled, I do think it is worth a formal complaint, because this shouldn't happen to anyone, and especially not to someone who suffers from a longterm, painful condition.

    It might be worth taking time now to jot down a few notes, to use when you come to complain. If your gp is supportive, it might be worth telling him/her about your experience, and enlisting their support, ditto with your rheumatologist.

    Now that you are home, I hope that you are in less pain, and will recover well. Do post to let us know.

    Look after yourself, best wishes. Mavis x

  • Hi there - I can completely sympathize with you regarding post-op pain management - a few years ago I had a wrist joint replacement after it was badly damaged by RA. I had a horrendous time after the op although the consultant had promised that pain management would be controlled, as soon as the pain kicked in the nurses just offered me ibuprofen and paracetamol. I had a nerve block in my arm as part of the anesthetic for the surgery, this means you can't feel anything in your arm for a few hours after you come round from the operation. Because I couldn't feel anything for a few hours after the operation the nurses just assumed that I wasn't in pain - although the consultant had told me that I should be dosed up with strong painkillers in preparation for when the nerve block wore off. It wore off in the middle of the night on a Friday (possibly one of the worst times to need help), I was screaming and crying in agony it was so painful (and I'm pretty brave and stoic usually) but the nurses just kept trying to give me paracetamol. When I asked for a doctor they told me they that the doctor was asleep and they didn't want to wake them. It was the most horrible night of my life, the following day the staff, nurses mostly, treated me like I was a hypochondriac and were very patronizing to me, apart from one male nurse who seemed to understand what I was going through. The penny didn't really drop, in terms of staff not understanding RA and associated surgical procedures, until I'd been in the hospital for a day and a night and one nurse asked me if I'd broken my hand. When I explained I'd had a wrist joint replacement she said she didn't know that they did operations like that.....I do accept that there may have been a general failure on that particular ward to read charts and brief nurses etc. but I had always put my trust in the NHS and thought that they would always give the best possible care......I know this is one incident and in other hospitals, staff are wonderful, caring and knowledgeable. I'm not the kind of person to tar everyone with the same brush but I think general awareness of RA is not at all good - and therefore the pain involved is very often under-estimated.

    But I hope you recover - be strong if you can - this chronic illness can provide you with a strength and insight into being human that can put you up there with the most enlightened souls.

  • Hi I think it is disgusting the treatment you received, or should I say NOT received when it comes to pain relief. Did they not ask you to take your own medication with you when you went into hospital for your OP?

    I am hoping after this week being "RA Awareness Week", which I shared on FB and hopefully people will read and start to understand will make a difference.

    I really do hope you have a speedy recovery and start to feel much better.

    Take care, please keep in touch, we are here if you need to share how you are feeling.

    My thoughts go out to you, look after yourself, at least we know the pain you are going through.

    Best wishes Sue

  • Thank you so much for taking the time to respond to me. I know everyone has busy lives, so I do really appreciate it. :)

    Before each GA/surgery I've had; jaw, ankle, wisdom teeth removed and fixing a broken bone - I've spent time the anaesthetist and they've made a pain management plan. What seems to happen is that the after care is poor. The message does not seem to translate to the staff on the wards and I get ignored. I get quite tearful after general anaesthetics and I am very bad at advocating for myself and feeling confident in saying that I am in pain. So, I should accept some responsibility and advocate for my own needs and ask the nursing staff to ensure they follow the plan.

    Both the max facs consultant and the anaethetist were aware of my usual pain meds, so advised that I should be prescribed oramorph, so I have no idea how this got so badly lost in translation. I know that ward staff are very busy. I'm a social worker, so not too far removed from the types of pressures on nurses but I do feel that 3 bad experiences in 3 different hospitals is telling me something!

    Thank you again. I'm slightly less sleep deprived and feeling less emotional.

  • Rant away darlin, your entitled! I think we can all recall occassions when we have felt patronised about our disease. However you have had more experience of this dehaviour than most with regard to surgury. I expect to have surgury on my left jaw within the year so I can empathise as I know what jaw pain can be like.

    I wish you all the very best. XX

    I would appreciate any information you could give me about the operation as you are the first on here that has mentioned it. However if you are not up to itat present I completely understand. Take care. XX

  • I'll drop you a message now. :)

  • I take hydrooxychloriquin, sulphasalazine and inject methotrexate.

    I started on just hydrooxychloriquin, the others have been added over the years as it developed.

    Good luck

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