Hi all feel I need to say something as when I visit my rheumy he makes me feel like why the hell am I there as my bloods are quite stable and he tells me I am fine when I am going through terrible pain with wrists and hands and feel terrible all over, I feel at a loss as you cannot compare with others who see him and it makes me wonder if others are going through the same as it does not seem very well monitored also I happened to go to Guys and saw a lovely Professor there for osteoporosis and he noticed my hands and said they needed treating before the Osteoporosis, which confirmed my suspicions, can't change to any other as they are a much longer journey so it's great to come on here as everyone is so helpfull and makes you feel you are not alone. Sorry for the long moan.
RHEUMATOLOGIST: Hi all feel I need to say something as... - NRAS
RHEUMATOLOGIST
No I am the same I saw the rheumatoid consultant I felt awlful ache fingers swollen nausea fatigue and he says I am good bloods are good see you in 6 months 10 min if that I am with him 😫😫do feel like time waster just give me another prescription and that’s it where as the nurses are great 👏👏
Yep nurses are great but they all seem a little in awe of the consultant as he is very offish even my husband who can usually get people to open up failed to get any response after he said come and see me in 6 months when my husband said oh thats fine that she has to live with the pain till she sees you again - what can you say as you can't question them too much as that counts for rudeness so maybe I will have to look around for another consultant Good Luck for the future
I’m having the same problem, and I’ve decided to change Rheumy doc and hospital trust. I’ve put up with him for 10yrs but putting my care first now as I feel he’s given up on me. I posted Dilema Please Help and these wonderful people on this forum gave me the answer I needed. Good Luck in your search 🤗X
I’m sorry to hear this 14penny. Are you prescribed painkillers? I have a lot of joint destruction and that is what causes me pain the majority of the time for which I take painkillers. Could that be what is causing your pain or do you have visible inflammation ? You could name your consultant and the hospital to see if others here are under the same one and get their personal experiences of him or if that’s no allowed ask people to message you. You can also request to change rheumy, you don’t have to stay with him. I hope you get something sorted.
Hi Kitty, The Proffesor I saw was at Guys Hospital Tim Spector a Rheumatologist and I would ask if I could go there but on the journey home I had to stand all the way on the train and hold on to pullys to stop falling over so maybe it would not be a good idea but it did give me an insight the type of treatment might be hugely better I have a tendon torn away from my shoulder and the other one is hanging on so it all makes it a bit awkward for doing things both knee replacements are really good though Take care and thanks for reply
Hi 14penny. Try to see or speak to your GP and ask him/her to refer you to someone else as I really don't think that's acceptable. Tell the GP what your Professor said too. Good luck, you need help and it doesn't sound as if you're getting it.
Thanks for reply and I actually had the courage to tell my rheumatologist what the Professor said and he said well we tried you on Enbrel but that didn't agree so he was not very concerned about that I will give it a bit longer as I am not in fighting mood at the moment Take Care
I can understand that. x
Agree with this. Get a referral for a second opinion. 👍🏻
It isn't acceptable to just look at the results of blood tests. We are people with pain, not just lab results.
If it isn't possible to discuss having an ultrasound to look for inflamed joints or ask for help with managing the pain, then a change of consultant would have to be considered.
Even if it is a longer journey to another consultant, it would be worth it if you succeed in getting things under control.
14penny remember if you are in pain it is not normal though many of us are deemed 'normal' for living with it every day. So do what is right for you and change, call, email whatever to get the treatment you deserve.
I agree with KittyJ that sometimes pain is because of damage, not inflammation. But it still needs to be treated!!
Writing a letter/email might help? If you wrote very politely to say that you didn’t feel that you were able to express you concerns during the appointment. And were disappointed that he didn’t seem to acknowledge the degree of pain you are in. You would like to ask for this to be investigated more thoroughly in case a different treatment plan would help?
It saddens me to hear this 14penny as we are all individuals with are own unique set of symptoms, pain, needs and treatments with this disease and are not just robots who come from a text book and should be compared to each other. It's good that you have the Professor who sees that you need your hands treating before the osteoporosis. I tire of saying why do some consultants not see people as a whole person and 'join the dots' in respect of this. I think some are so lucky and have consultants or health care professionals from whom they get a positive experience and they are to be praised and treasured. Then there are others who have to battle to be heard, or feel the 'one size fits all' approach is happening each time they attend an appointment and feel they are not getting anywhere and remain in this cycle, rut or feel up against a brick wall of frustration and 'come and see me in 6 or 12 months time( Or 'when you are feeling better' in my case), only to go through the same again despite all our efforts to explain. I hope you can get to see someone else and get the treatment you so deserve. Good luck and take care x
No its good you can tell us.!! It's a horrid feeling like you are being dismissed. They have maybe been in the job too long and forgotten the patient is a real person.
I'm lucky mine is very good and feeling but I had a horrid orthopaedic doctor who I cried every time I saw him. So I asked to change docs and the second must have talked to the first as he was just as nasty!! That was a horrible period and I was glad to get the op finished with !
Oh I am so glad you have finished with the horrible docs, and your one you have is nice it makes such a difference not only in treatment but how you are feeling as know one knows the pain inside as I know mine does not show on the outside well at the moment anyway Good Luck and Thanks
I absolutely understand how you feel. My original rheumatologist used to look at my bloods and ignore my symptoms, and because the meds led to me having repeated chest infections I now have long term lung damage. Eventually I went via PALS at the hospital to complain and request a change of consultant. They advised me to go via the GP who supported my request. I later discovered I wasn't the first to complain and the rheumatology nurses understood and sympathised. My new consultant is wonderful, thoughtful and a great listener. He arranged lots of blood tests to get to the bottom of the chest problems and got me the right help for that whilst changing my RA meds. Changing was the best thing I did to help myself.
Thanks for reply and I was happy you had such a good outcome I am due to see Rheumy next Tuesday face to face and if I feel the same I think I will try to find another one which is so annoying as the one I have is very near to where I live So glad you got sorted and Good Luck
long story short over 20yrs ago I waited 2yrs to see a Rheumy , I got treated awful came out crying, my then GP then said I had fibro so had no treatment for over 20yrs, if I ever rang doctors or say doctors they said there was nothing they could do for me.
my pain and suffering would come and go over the years sometimes I was in so much pain couldn't even wear a bra sometimes.
I gave up over the years to even bother anyone about how I felt at times
20 yrs later I started not to be able to walk on my foot-toes -the pain and burning and my fingers were going all lumps on the joints so back I trotted to the doctors thinking it was going to be a waste of time again
but this time saw a locom GP, I told him I suffer in silence, he said but yes but sometimes you need a bit of help, he sent me for blood tests which showed a very very high RA factor, and from that within less than 2 weeks was seeing a Rheumy ,I went there expected to be treated as I did over 20yrs ago but no this time this Rheumy he done scans, xrays, blood tests everything and now I am being treated for RA and they can;t do enough for me.
so don't put up with it, go back ,don't be like me, don't put up with it,tell them your not happy with how your being treated/
My doctors the same as long as the blood tests are all ok he takes no interest in any other aches or pains.
Thanks for reply I have had loads of replies advising not to put up with this sort of treatment so I am going to give my Rheumy one last visit and be more blunt with him and if this dont work I will ask to be moved to another one and I think you should do the same Good Luck
I really feel for those whose Rheumatologists are unsympathetic. I don't want to sound smug but I must defend mine. She is the loveliest person you could wish to meet. She never rushes you, she listens to everything you have to say and acts on it. It is like meeting a friend. Even last week during my telephone appointment she was so thorough and a pleasure to talk too. I feel so lucky after some of your experiences. x
I agree with the all the comments here. Contact your GP (not easy at the moment) and ask to see another Rheumatology Consultant. State you wish to see the top Person (most qualified). If you can pay for the first appointment and then ask to transfer back to the NHS with the same Consultant. You should see them within a few days/weeks.
I did this several years ago now and I could not believe the difference in the Consultants at two different Hospital Trusts. I think I am correct in saying the larger the Hospital the more money they would have to spend on each department (hence each patient) and of course the more Consultants in RD they will have.
Yes, I have to make a ferry journey to see my Consultant, it is a whole day excursion but so well worth it. I have had RD for 31 years with a lot of the pain I have now due to joints being badly damaged.
I note that other Trusts are a journey away, could you ask someone to take you? I do feel for you, I have been in your situation when you feel Consultants are not listening, medication has improved so much since I was first diagnosed, it is out there but it is difficult in finding it.
Take Care
Thank you so much for your comments I have taken note of it all and may take this route I now feel I have more options open to me it is so horrible being in pain all the time and am glad you have better help now. Good Luck
I feel the same phone call from they bone nurse....didn’t even know we had one at gps. Told me she was to follow up to check on prednisone which I have been on for years at present on 25 mg I have been off balance and have a distention between stomach and breasts which affects my breathing. My Rhuemy nurse just ignores me or doesn’t know what causing this but it was lovely to talk to someone who is going to follow things up for me. 🙏🏽 I can walk for about 1/2 hour now but very sob.
I was just saying on here the other day that when i see my rheumatologist i leave feeling really annoyed. He doesnt ask how im feeling or getting on and cuts me off constantly mid sentence. He wouldn't even look at my photos of multiple swollen joints (because u can guarantee the day of your appointment all the joints will look fine lol). Im going to see if i can maybe see the other rheumy at the hospital but wouldnt want to be put on a big waiting list again. It takes 2 years here to have your 1st rheumy appointment! X
I think that our relationship with our Rheumy is a very personal thing. For instance I have been under the care of 2 Rheumys so far. The first one had a bit of a reputation for being somewhat abrupt . On my first visit I sat in the waiting room listening to other patients complaining about him. I found him a pleasure to deal with, business like and very straight forward. He was always happy to answer any questions. I couldn't work out what other patients were complaining about but, as time went on, I heard the same moans over and over and I realised that the people who were complaining seemed to expect a very busy Consultant to wrap them in cotton wool and provide a personalised service. Of course this is just my experience of one particular Consultant and his patients. I understand that there are good doctors and bad ones, patient ones and those who are impatient. Although I have to say that I wouldn't want to be in their position with fewer and fewer of them being expected to see an ever increasing number of patients. Perhaps if the NHS had the resources they need we would see fewer grumpy, worn out Consultants and more reasonable waiting times for an appointment. We can but dream.
No I would not like to be in the consultants position today but having said that that is the job they chose and most patients are very happy to get the help they need I would be sooo gratefull for some understanding and help and the Rheumy would surely get something out of helping people Thanks for reply Take Care
Mick I do not want to be wrapped in cotton wool... I just wish they would not say this is a new wonder drug just be honest and say you may never be back to Your old self the only time I’ve had a straight forward chat was at the very start.. second visit senior nurse told me my ccp bloods were huge 720 and my outlook isn’t going to be great. Consultant we are just faces in there clinic Pain is no fun so no wonder people are grumpy I try my best not to be grumpy..
Same getting no we’re fast 4 years later and still no better
Oh you need to change Rheumy as I am going to try to do just frightened I will end up with someone similar Good Luck
Penny feel like I’m pushing a snowball up a mountain.. I’m half certain they will all be the same in this department I’ve even consider changing hospital but all the rest are tiny in comparison to my own so less money and so on..I really feel this is just me now and I have to except my disease I dunno.. doubt I will ever be back to the way I was.. goodluck to you. Hope your sorted ASAP. X
Really upset after Rheumatologist appointment 
What shape os your RD?
Todays appointment with rheumatologist
OFF TO SEE THE RHUMY TOMORROW, WORRYING.
