Rheumy appointment from hell
theresa4
Member Posts: 696
Yesterday was my biologic clinic day and I sat there for 4 hours again. Everyone who came in an hour after me went in and there I was still waiting for a doc to call my name. The nurses kept going down and checking and said yes my notes were on top but still others were being called before me and the nurses had to keep going down before finally getting a doc to see me I think they stalked her. I made jokes about me being an awkward case and they probably all kept shoving my notes out of the way but the truth is I really did feel that way but was scared of sounding paranoid (it isnt the first time I have been there first and seen last!!!). When I finally saw the doc she barely asked me anything, walked out mid sentence to talk to someone else didnt follow up on the previous comment when she came back and gave me no opportunity to ask anything. They scanned my hands said no major active inflamation oh the drugs must be working despite my joints being stiff and painful most of the day. Prescribed Lyrica for neuropathy pain which has made me feel drugged and dopey with a possibility of RAPID weight gain (joy ). And staying on the biologic infusion for now and MTX. Back in 4 weeks for another review so another sit and wait while I get ignored probably! for another 4 hours, to be told all is working and fine. BUt how can it be fine when I cannot funtion like I used to. I cant work for pain and now feeling so drugged up my head keeps spinning and i have to re focusa regularly. I took this lyrica last night a t 9pm and the effects are worse now than when I took it. Is anyoineelse having these problems that nothing works and you feel like you are becomming a hindrance to the rheumy docs. I have always had a good experience with them but I feel like I am being shocved aside now. apologies for any spelling misakes but my head wont stop spinnning, and I am so upset maybe I am paranoids.
Theresa x
Theresa x
There are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx
Theresa xxx
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Comments
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Hi Theresa,
First a ((( ))) and a hope it will be a better appointment next time. Its not nice to feel your the one nobody wants to see or help and they shouldn't do it to you. I think next time you go could you’ joke' about having to wait 4 hrs again so they know from the beginning you must been seen?
I have been on the lycra ages now but they did take some getting used to with me. Instead of going up over 3 weeks I had to go up over months and even now very rarely take the 600...... I don't go sleepy I get wired, float and play with the fairies....... My Rumo for a while said to take 75 3times a day and then 150 also 3times a day....... There would seem to be some range in them.
I also worked my way through the side effects. Didn't mind the euphoria (still don't) but the anxiety and hallucinations I couldn't handle too well so that’s how we ended up doing the dosage slightly differently. For me they work s well I would not give them up but had they not been so good at taking out the pain there is no way I would have stayed on them back then. I now find they don't mess with my head so much but I have been on em for 2 years.
I really hope you can find some better and kinder treatment and sending you another ((( ))) Cris x0 -
Hi
I have recently been put on lyrica and also feel exactly how you are describing.
I used to play so much sports and keep fit and all of a usddne the past 2 years i have gradually got to a point where i cant walk my dog for more than 20-30 minutes. I ahve been out on lyrica and just this morning dr put them up to 150mg. They have eased the pain but like you feel a bit dopey and drugged up although i am sleeping much better too.
I also take sulphasalazine, prednisalone .. and vrious others but also feel like everytime i go to the dr I come out feeling a bit stupid. They often say that my inflammation markers are normal so to continue as they seen to be working so feel like shouting WHY AM I HURTING???? Icant do what i use to do, surely this cant be all they can do for me. which is how i feel most of the time. I often feel like they cant do no more nad that i should just deal with it. But why should I? I've kept myself fit and healthy all my life, no smoke only drink occasionally and dont do drugs yet I have this crappy arthritis thing and in my mind nothing is working.
There we go rant over with. I sympathise with you and know exactly what you are going through.0 -
Personally, I've had very bad experiences of rude rheumaologists who don't talk to you properly, or completely ignore you. This is my advice; COMPLAIN.
In the end I asked to be referred to a different consultant and now I'm a much happier bunny. YOU are the one in pain. YOU are the ultimate expert on your own body. Don't ever feel bad for deserving respect.0 -
Sorry to read about your experience with rheummy.That cant be very nice for you and wont be helping you at all.It is bad enough to feel so awful without extra worries.
Do you think you could change consultant?I am not sure how easy it will be but some others on the forum have done so.
At least ask your GP.Good luck.
All the best
ElizabethNever be bullied into silence.
Never allow yourself to be made a victim.
Accept no ones definition of your life
Define yourself........
Harvey Fierstein0 -
I changed consultant after putting up with a crap rhemy for many years, the final straw was his refusal to see me whilst I was pregnant as ' there was nothing he could do whilst I was pregnant' (btw this is complete and utter crap, its just more difficult) ...now wonder why i waited so long, love my new rhemy who treats me with respect and dignity, listens to what I say, and has finally given me good advice and not relied on me to tell her what to do, she offers support even if I don't think I need it which still astounds me after 10 yrs of the opposite.
Talk to your GP they can assist in changing consultant0 -
Hi Theresa
I am so sorry to hear how your appointment went, or more to the point, did not go. You say, up to know you have got on well with them - I suppose at the next appointment, if it happens again, it is time to get more forceful and say how you feel about your treatment lately and tell them like you have told us, how you are feeling at moment so, excuse me, but you do not think everything is alright at all.
You are not paranoid, you are not imagining any of it. You are somebody, not a nobody. They are paid to do their job and you are one of their patients, you should be treated with respect and your treatment etc discussed with both sides taking part.
I would try not to leave until there is some understanding between you and the team and you feel more happy with the outcome
I know it is easy for me to say, but enough is enough. The other option is to find someone else to see.
I wish you well,
Luv
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
First thank you all for your kind words xxx
I really dont want to change my rheumy as he is the best in my area and is head of the department and I know from other people who have complained they were moved to another who isnt as good. To be honest it wasnt him it was his registrar (or under maybe I just promoted her) she kept going off to sort out something else. The woman who scanned my hands was lovely and took her time over it but of course she couldnt answer my questions. I need to be more assertive but after sitting there for 3 hours I was in such pain and so stiff I wasnt quick enough. At this clinic you see the rheumy consultants registrar then the consultant pops his head in to double check and confirm or deny his registrar but as it was nearing end of clinic he literally popped his head in whereas usually he sits down and asks a few questions.
I hope I get used to this lyrica as I still feel really dopey and its half one over 16hrs since I took it. (and she said double the dose after a week taking one morning and night ) maybe they are trying to shut me up as I wont feel anything if I am doped :roll: :shock: all day and night!!
I am at the hospital next wed for my next biologic infusion so I suppose I could chat to the nurse specialist about how I am feeling. I am feeling very down at the minute my Gram is in hospital and is very ill but I cant visit due to my immuno suppressants as they have a stomach bug on the wardx which they belive is airbourne. Everything is so messed up because I have arthur I cant work , I cant function, I am in constant pain and now Im dopey.
Sorry you dont need me to maon on :oops: I just cant talk to anyione at home
thankyou all for being there for me
Theresa xThere are many things in life that will catch your eye, but only a few will catch your heart...pursue those. --Michael Nolan
Theresa xxx0 -
Hi,
I know how hard it is but, could you perhaps, speak, phone through the consultants secretary, or write a letter to the consultant, explaining the problems you have with their registrar, this might bring his attention to the problem and make him do something to sort out the problem. If you tell him how you feel, he won't have the old excuse, that he didn't know. :?
If you feel that talking to the hospital is too hard or awkward, how about telling your GP, and making it clear you are upset and distatisfied. You could throw in the fact that you don't want to change consultants, as you find him very good, a compliment is always welcome, and lets him see that you are not just complaning for the sake of it! :shock: A good GP will not want his patients to feel like this, as it will effect the treatment and he may well be able to mention it to the consultant without involving you too much at all. You may also feel better because, you will be taking control of the situation and not just feeling as if you are left sitting, waiting like a lemon!
I hope that you can sort something out that will improve the situation quickly.
Good luck, love Sue0 -
Oh, Theresa, how I can relate to everything you've said! I DO feel for you. I have experienced it all and am ashamed to say that a few appointments back, when I got shunted to a registrar and thought the lady I had changed to couldn't be bother to see me ... I sat in the clinic and just sobbed. I felt so stupid.
I dread going to my appointments now ... all of them ... at all the clinics. I am tired of bolshi medics and some of the nurses who treat me as though I'm a nuisance (though I am always pleasant with them) and I find myself being ushered out with the vacuum cleaner. I seem always to get the last appointment of the day when nobody can be bothered to talk to me.
I went for my bilogics assessment the other day and reported the rash to the nurse, who went in search of a dermy to determine whether it is psoriasis. He returned to tell me 'nop! everyone's gone home - I felt great then, I must say.
Hope your next appointment will be better - if not, contact PALS ... they'll listen and help
((((( )))))s
Dolittle0 -
Oh I really feel for you and understand how you must of felt being sat there watching everyone go in b4 you.
As for the Consultant how rude. Could you write a letter with what happened and how it made you feel and send it to the hospital so they can see what people are going though, maybe the person does it to everyone and this isnt right at all.
I do hope that everything works out and you feel a lot better the next time.
Keep on posting as this site is amazing with such wonderful people.
Love Claire
xxxxxxxx0 -
theresa4 wrote:I am at the hospital next wed for my next biologic infusion so I suppose I could chat to the nurse specialist about how I am feeling. I am feeling very down at the minute my Gram is in hospital and is very ill but I cant visit due to my immuno suppressants as they have a stomach bug on the wardx which they belive is airbourne. Everything is so messed up because I have arthur I cant work , I cant function, I am in constant pain and now Im dopey.
I just cant talk to anyione at home
Theresa x
Dear Theresa
Everything does seem very bleak for you at the moment and I am sorry. One thing you can do is talk to the nurse specialist next Wednesday. Talk to her as you are talking to us. Tell her the truth of how you are really feeling at this time. It does help to share. If you get on with her, please do that, she will understand. These people are there to help us but can only begin to do that if we explain what is going on.
Chin up,
Luv
Elna xThe happiest people don't have the best of everything. They just make the best of everything.
If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.0 -
elnafinn wrote:theresa4 wrote:I am at the hospital next wed for my next biologic infusion so I suppose I could chat to the nurse specialist about how I am feeling. I am feeling very down at the minute my Gram is in hospital and is very ill but I cant visit due to my immuno suppressants as they have a stomach bug on the wardx which they belive is airbourne. Everything is so messed up because I have arthur I cant work , I cant function, I am in constant pain and now Im dopey.
I just cant talk to anyione at home
Theresa x
You are having a tough time just now Theresa and I'm so sorry that rheummy are so insensitive.
We are here for you though and care about what is happening to you and how you are feeling x.
Perhaps with all that is going on you could phone the helpline for support? especially when you don't feel you can talk to family it might be good to be able to talk things through?
as Elna said....keep your chin up Theresa.
hope you have a better day today.
Iris x0
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