My RA consultant is a bully.

RadarsBear · 30. Jun 2020, 19:45

Hello. I'm new here so please forgive any mistakes. I need some advice. I have been stuck in my bedroom since February as I can't manage the stairs. My consultant has DEMANDED that I attend an appointment at the hospital or "i will no longer treat you" even though I explained the situation. My GP is no help and regularly reduces me to tears. I am in CONSTANT pain. I have a morphine patch that is useless. I take tramadol which might as well be Smarties. They stopped my Oramorph which was the only thing that helped. I am on so much medication i must rattle! I take Amitriptyline, Baricitinib, tramadol, iron, folic acid, vitamin c and prednisalone. I cant cope with the pain. No one listens and they all bully me into doing what they want. I am so fed up. My RA is ruining my life. How do I get my consultant to understand that I have pain everywhere. I also have fibromyalgia and he blames that for everything. I tell him I get symptoms A,B and C and he says thats not a side effect of the medications. But if I'm getting them what do I Do? I always feel like a naughty school pupil when I've seen him.

Ellen · 30. Jun 2020, 19:51

Hi @RadarsBear

I know you are wishing to speak to the Helpline Team, but after seeing your post felt I wanted to at least welcome you to the Online Community tonight.

You sound as though you are having such a rough time and it's possible that one of our members will see your post this evening and have some experience to share with you.

I also thought you might want to have a look at this information about PALS:

https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

I am sure you will get some excellent support tomorrow from the Helpline Team.

Best wishes

Ellen.

RadarsBear · 30. Jun 2020, 20:29

Thank you so much for the lovely welcome Ellen. I felt a bit better just being able to "unload". Thank you too for the PALS link. I shall check it out. :)

Mike1 · 1. Jul 2020, 03:51

You need to speak to PALS like suggested but I would also recommend that you contact Adult Social Care at your Council as they may be able to send an OT out to you to see what help they can offer, they mat also be able to help get a stair lift put in for you. I sympathise with your pain issue, I am on MST and Oramorph myself yet am still in constant pain throughout. I would, however, recommend that you find something to do to help take your mind off things. Do you have a hobby that you enjoy? Can you get down stairs by "bum-shuffling" from one step to another then sit outside? I know it isn't easy but one has to make a bit of an effort, even if it increases pain in the short-term, to reap some benefit. I hope things improve for you soon.

helpline_team · 1. Jul 2020, 15:55

Dear RadarsBear

I'm so sorry to hear of your situation. When you have a complicated pain problem you may start to feel as though the specialists are frustrated with you as much as the problems you are bringing. But sometimes you may find it helpful to see a specialist pain management clinic - as their approach can be a holistic one, and might be of benefit.

The doctors are all very concerned about some of the long-term implications of the opioid medications and they are under pressure to reduce the use of these drugs. I'm attaching a link to a BBC story about this later.

If you'd like some support on the phone, you'd be most welcome to ring us at the Helpline on our freephone 0800 5200 520 (9am - 8pm Mon-Fri)

https://www.bbc.co.uk/news/uk-england-43304375#:~:text=Opioid%20painkillers%20include%20tramadol%2C%20codeine%20and%20morphine%20Doctors,2017%20-%20equivalent%20to%202%2C700%20packs%20an%20hour.

Best wishes

Guy Helpline Team

frogmorton · 2. Jul 2020, 06:36

@RadarsBear

I am so sorry to read your post. Bless you it sounds pretty awful😕 if offloading helped why not come and join in with the rest of us I'm sure it will help you to chat to people who understand and won't judge.

Sending some ((()))

Take care

RadarsBear · 2. Jul 2020, 22:00

Hi Mike1 and frogmorton,
Thank you both for your messages.
Yes it helped a LOT to unload and nice to realise I'm not alone or going crazy!
I was diagnosed with RA late 2018 and Fibro late 2019. To say the diagnosis changed my life is an understatement. It's changed my whole families lives as well as mine.
I can cope with everything except the on going and cosistant pain.
To answer your question, yes, I challenge myself every single day. I'm always pushing myself. I've not given up yet 😁
Thanks again for your kind thoughts and words. RadarsBear 🐻

stickywicket · 5. Jul 2020, 13:19

Radarsbear, I hope you've managed to action some of the really useful suggestions which people have made.

Just a heads up. Very many years of RA and OA, new joints etc have made me realise that the job of a rheumatologist is, essentially, to get our disease under control. If our blood tests show that our DMARDS (in your case baricitinib) is doing this then the rest is, for better or worse, up to us and our GPs. GPs can only, really, prescribe physio, pain relief and a Pain Clinic. The ball's in our court for the rest.

I think most of us acknowledge that physio and distraction are our main weapons. Even when flaring we need to take our joints, very gently, through their paces daily. If we don't then muscles weaken and pain increases. Distraction is a more personal thing. One man's meat is another's poison. It's a matter of what absorbs us and helps us to forget about pain albeit briefly. Focusing on it only – literally – makes it worse. Or, at least, FEEL worse. And, as you've discovered, pain relief is not a solution because we simply become tolerant of the meds and require more and more to achieve less and less. To physio and distraction I would add at least one good belly laugh per day. Can't beat 'em.

As Mike suggested, getting in touch with your local Adult Social Care Dept. (Look them up on your council's website) might set a few things in progress to make your life easier and your options greater. I do hope so.

RadarsBear · 6. Jul 2020, 12:17

Update;

I want to thank you all for messaging me and for all the kindness, good advice and most of all a listening ear and a shoulder to cry/moan on.

I made it to the hospital, and I saw a different consultant. They told me that the Baricitinib IS working, and that all this pain is more likely to be the Fibromyalgia. We spoke about the opioid pain killers, and although the consultant sympathised with me, they reassured me that it was better for me to be off them. We spoke about so many things and I felt so much better. The message was the same, but I felt the consultant LISTENED to me, and that alone made me feel better. I was asked (rather than told) was it ok to change my medication slightly, and would it be ok for me to have some more blood tests and x-rays. What a difference! I felt that, at long last, my illness and subsequent medication and treatment, was MY choice and I was not bullied into it regardless of what I thought. I came away feeling a thousand times better and full of hope for the future and resolve to try harder.

Since my appointment, sadly, I've had a flare up...I'm saying no more because I know you all know exactly what I'm feeling.

Inspite of the glare up, for the first time in what seems like forever, I've started to plan things, I've written a list of things that need attention in and around the home, and we are starting to do them together. My help is very limited, but I'm trying, and that makes me feel 100 times better than just vegging. I've started the chair based exercises again and I've even planned and arranged a birthday party. I feel alive, worthwhile and useful again.

I want to thank everyone again for the time, and for the effort, in replying to my post. In answer to some suggestions, I did check out the PALS link, thank you for suggesting it. I have already been in touch with the council about aids/adaptations for the house about 18 months ago, but maybe it's time to call again as my physical needs have changed. I have started the exercising again, and I've cut down on the Tramadol. I've started writting again and although it hurts it's a "good hurt" if that makes sense, as I know it's loosening and strengthening muscles. And someone,(stickywicket?) suggested a "good belly laugh" every day. Well you'll be pleased to know that belly laughs are a great medicine and I take it multiple times a day 😁
Thanks again
Radars Bear 🐻

Mike1 · 6. Jul 2020, 13:46

I am so pleased that your appointment was so positive and that you were listened to for a change. It is well worth getting hold of the Council again, so .............!

frogmorton · 6. Jul 2020, 14:40

WHAT FABULOUS news @RadarsBear !!

I am sorry about the flare, but everything else - wow wow wow! You really are amazing turned it around pretty much yourself due to a listening ear here, a listening ear from the different consultant (keep that one!!) and your own will-power 🙂

I hope you decide to stay on the forum we do need people like yourself to help other new people when they are in distress. ((()))

stickywicket · 7. Jul 2020, 10:23

It's very good news that you managed to get to your appointment and had a good one which has enabled you to move on. Well done you and thanks for sharing it with us. Good news is always welcome here.

Do take things slowly and gradually. It's all too easy for us to have a rush of enthusiasm and so thwart our own plans for exercising. (Yup, that has been me on more than one occasion!) Little and often is much more likely to bring success than a big burst followed by painful and disheartening days off. Mind you, there's nothing wrong with an occasional day off to re-charge the batteries as long as it stays at a day and doesn't become two or three.

I do hope you'll keep us informed of your progress. The Living With Arthritis forum is best for this but such things are always a good read and encouraging for others.

helpline_team · 9. Jul 2020, 14:53

Hi @RadarsBear

Thanks for updating us. I hope your flare up is beginning to settle down.

I’m so pleased to hear that you managed to get to the hospital and that you came away from the consultation feeling better and full of hope for the future.

It’s so good to know you are feeling more understood and empowered because of the support you have received from other forum users. I hope you will continue to reach out for emotional support and practical advice.

If you haven’t already reached out to us on our freephone helpline: 0800 5200 520 (weekdays 9am – 8pm), please consider giving us a call. There are other things we can suggest that may help with improving your quality of life and with future consultations.

Best wishes

Mags

Helpline team

RadarsBear · 9. Jul 2020, 15:04

Hi Mags, thank you so much for your kind reply. Yes, I shall certainly stick around, and hopefully not only be able to continue to recieve support from the forum but be able to offer some to others as well.
RadarsBear 🐻♥️

Lilymary · 9. Jul 2020, 17:03

Although I didn’t contribute to this thread as I didn’t feel I have experience of the issues you we’re dealing with, I’m so pleased you have found the support and advice from others have been so helpful to you. And a huge WELL DONE for making a start on a different approach to the things that had seemed so overwhelming or out of reach for you. And I’m pleased you saw a consultant with a more patient-focussed manner. What a huge difference they can make,

As others have said, take it one day at a time and don’t feel too down hearted if you have days when things feel like they’re going backwards. It happens, and don’t feel you can’t come on here and have another moan. No one will judge you for it. We all have horrible days, and this is a great place to come to when you feel rubbish. Let’s hope you don’t have too many days like that.

RadarsBear · 9. Jul 2020, 18:17

Hello Lilymary,
Thank you for your message. I think a Good Moan should be available on the NHS as it's done me the world of good. 😁 Seriously it does so much good to be able to talk to others who know EXACTLY how you are feeling. Family and friends try to understand, and I'm sure we have all had people who say "oh I have arthritis too, I'm a bit stiff in the mornings" ... try as they might, and all with good intensions, but they don't have a clue what we go through. I am more than happy to offer a listening ear and help to others. The more we help one another and raise awareness of Arthritis the better. Thanks again.
RadarsBear 🐻♥️

My RA consultant is a bully.

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