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Really upset after Rheumatologist appointment

Hi everyone

Had consultant appointment today, second time with this doctor who is new to area so did not see me at my worst when first diagnosed so I feel doesn’t have a point of reference about where I am coming from (although he can read notes, not same as visual memory of patient not being able to stand up straight, unbend fingers etc).

Both times I have seen him I feel he really dismisses my symptoms and both times I have been in tears in the appointment as I don’t feel believed. I have seronegative RA with some non typical symptoms and main ongoing problem now that MTX has reduced swelling and stiffness is constant pain in hands and feet which really affects my quality of life and limits what I can do. I can’t take many of the standard painkillers due to another medical condition and just feel I am being left to struggle without effective help.

Basically he thinks I ‘look’ fine so I have to argue my own case for needing help with pain and what is causing it. It is really depressing and lonely making and is making me totally dread appointments as I go expecting a battle and to have my concerns belittled. Then I am more likely to get upset as I am so wound up already, and then feel he just sees me as a woman who cries easily. He does it politely but sort of flippantly and I feel like a child with no power to affect what happens to me. He doesn’t even look at some joints that I say are giving me pain.

Sorry to go on, I just feel really despairing. I told him it sounds like you don’t believe me, but I am young (40s) and this is really affecting my life including limiting where I can travel for work as can’t stand on trains due to pain. I feel anxious that this is the doctor whose list I am on if this is how it has been for both appointments, as I don’t see myself trusting him or feeling an equal partner in my own health care.

17 Replies
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Morning BlightyFiveStar, it saddened me to read your post; didn't seem right to put a thumbs up to confirm reading it 😔. It's so hard for us all to convey the pain on the inside and to feel that your consultant isn't listening- properly listening, is devastating! What your relationship like with your GP? Is it possible to follow up your hospital visit with a visit to the doc's to get it recorded how you are actually feeling? Youbeere at liberty to read your consultants notes- I would ask to see the reports. What is it that you needed from your consultant? Are you receiving the correct medication, do you feel, to allow you to lead a 'normal' life: living with RA? These are things to discuss with your GP as you are under their shared care.

Keep your chin up - sending a gentle virtual hug🤷

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Hi BlightyFiveStar, I can totally empathise with you. I was diagnosed with RA early last year and was seen by a rheumatologist who came across completely emotionally detached and unhelpful on the few occasions I saw him. I was given a combination of 4 different dmards ( total of 7 tablets) which made my stomach turn and didn't help the joint pain and inflammation at all. I felt like a guinea pig rather than a patient. You have every right to request to see another rheumatologist via your GP. That is what I did and although now in the early stages of biologics medication, I feel I can comfortably express my feelings and concerns to the female rheumatologist I now have. She is very understanding and caring. That in itself promotes better health. All the best!

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Hi there,

Completely understand where you’re coming from. When I got the aches and pains 6 1/2 years ago, I was seen by a registrar who looked after me well. 2 years in I finally got to see the consultant I was under who started talking about taking me off my medication and discharging me. I complained about severe shoulder pain and crepitus so he agreed to an x-ray before discharge. I was then fortunate again to see registrars who agreed I was probably only as well as I was because of the meds (again, nothing shows up in my blood results but ultrasounds always show inflammation). Last November, saw the consultant who took me off everything and discharged me.

By February I was back at the GP because of the pain and reduced movement. Thankfully the GP started me on everything again and hasn’t even bothered re-referring me to rheumatology as I was badly treated (his words) and he managed to get my symptoms back under control.

I know how frustrating it is to feel you’re not being properly heard by someone when others do seem to listen. Whilst I can’t suggest anything to actually help you, you’re not alone as so many of us experience this level of “treatment”. Remain strong and it may be worth speaking to your GP about how you feel the hospital appointments go - my GP said if they did need to refer me back at any point they’d insist I don’t go on the list of the consultant I’ve had trouble with.

Keep strong and good luck.

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I put the thumbs up sign as you know i have read your post. I would speak to PALS at your hospital and ask to be transferred to another dr who is more sympathetic.xxxx

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I can sympathise x

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Hi Blightyfivestar

I'm sorry that rheumy doctor are not listening to you

I had a similar appointment as you last time round. I was in and out in 5 minutes. It was lunch time!

They didn't listen to me at all or check my joints thoroughly as they should and didn't notice my wrists and right elbow were swollen and painful.

I had had a steroid into my right elbow a few weeks before which had not worked as well as the previous time.

They just talked about OA and weight.

Apparently according to them I wouldn't have RA if my wrists hadn't had signs synovitis at the time of diagnosis.

My anti CCP was raised on diagnosis so not sure where they were coming from. I was very upset when I left the appointment. Felt like I had wasted time and energy in attending the appointment.

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That is so dreadful. You deserve to be taken seriously, and if this consultant won't then do ask to be referred elsewhere.

I loved my first rheumatologist, who was brilliant, and was very nervous when I had to change. Luckily she too was great. But she left the hospital I go to last year and I have just had an appointment with the chief rheumatologist as they have yet to get a replacement. I was not impressed! Didn't listen, brushed over my concerns about changing drugs, prescribed the wrong things, forgot to give me requests for blood tests, etc. So I'm also wondering what to do as a good relationship with your rheumy is so important. I think if you have had 2 appointments that have been miserable then enough is enough. Speak to your GP about referring you elsewhere. Or ask PALs if they will organise an advocate to accompany you to the next appointment as you feel so belittled - that might scare the consultant into behaving!

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Hi. Sorry to hear about your experience. I think many Doctors go into medicine with the idea of curing people, so when that isn't possible (as in RA) protect themselves from the disappointment/reality, by distancing. You would hope that the Drs who have a heart, and can look after themselves around distress, might be found in Rheumatology. I think your Rheum has chosen the wrong specialty, but hopefully you could be referred to someone else. Very best wishes.Take care. Remember it is him who is hopeless, not you!

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I have felt and been exactly where you are. write to the head of rheumatology and let them know how you feel. I think in UK they have some sort of advocacy too, so utilise them. Also if the hospital has some sort of patient advocacy go to them too. You are a consumer and have every right to be treated with empathy and respect. If you bought something you wouldn't accept faulty goods, same principle applies here.

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I to was treated like this at 1stage the rheaumtoglist said to my hubby she's bad isn't she what do u want me to do with her .as if I wasn't in the room .told my gp this she was furious and refer me to another consultant rheaumtoglist who is brill I have ra anklossing spondlittis uvittis vision loss. He always listens to me and asks my opion on meds treatment .ask to be refer to a new rheaumtoglist it's ur right .amy

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I am so sorry to hear that: think we may be same PH area having read your previous posts! Like you, unimpressed and feel treated like a child at times rather than educated adult. Total lack of info from mine, including initial appt and often met with blank stares when i ask questions. Someone else on here said totally 'self educated', yep same. I don't know what to suggest but you're not alone.

It's bad enough this often invisible disease has such a poor public profile but when experts seem to deny symptoms too, seriously upsetting for you. Could paraphrase the old joke what's the difference between God and a rheumatologist? God doesn't think he's a rheumatologist: but I'm sure there ll be loads of people who have had v different experiences 😄

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It really saddened me to read your story because I have a brilliant rheumatologist who I’ve seen at least twice a year for 14 years. He really listens and is sympathetic to my pain. I don’t know where you live, but is there only one rheumatologist, or can you be referred to a different hospital?

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In a way I'm glad my arm wrist and hands were swollen like balloons when I at last got to Rheumatology. ..st least there was no doubt and it got diagnosed quickly...I'm sero negative so the bloods didn't show much apart from raised CRP and ERS .

Once the RA started to settle I was still so tender everywhere eventually I got another diagnosis secondary fibromyalgia alongside secondary carpal tunnel. Keep at them ((hugs)) M x

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What does sero negative mean and that it didn’t show much apart from the raised crp and esr

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Hi with sero negative the rheumatoid factor isn't in the blood...yet! Sometimes it comes later or not at all so it can be harder to get a diagnosis. M x

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Shocking! You’re not alone but you deserve better treatment than this.

Try to take a photo diary ... and change your rheumatologist .... wouldn’t hurt to chat with your doctor about how you feel too.

Best of luck

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I can relate your frustration. At my first appointment with my rheumy, I was being treated the same. Nothing was given to me to reduce the pain and the young rheumy after taking some note and just sent me away.

I was in pain and frustrated. I thought she just wanted me to wait outside, I did as I expected at least some medicines for me to reduce the pain and the swelling joints. Waited for sometimes, no sight of her. I went straight in and demanded an answer.

She told me that the blood test from GP would not be enough to determine my condition, she wanted me to go for another blood test and X-Ray before she gave me any medication. I told her I was in great pain, I should be given something before I went home. She said I could go to the emergency clinic to request for some pain killer first and back to see her again in 3 weeks.

We, the RA patients are in great pain, we need a good rheumy to advise us what to do and at least the rheumy must listen to us. So my suggestion is to change the rheumy since he careless about your feeling.

Very sorry to know your encountered with him twice. He has wasted so much of your time in getting early treatment.

Amy

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