Just totally confused

Had an appointment with the rheumy today. Thought to myself I'm gonna try to get some answers.

I have been taking MTX for 12 or so years, sulphazalazine before that. Going along for appointmens once or twice a year - getting blood tests as requested. Going to ages with no probs. then knee flares up, painful, stiff, swollen hot etc. then after a while all ok again. Then about 2 years ago the hip decides to join in - sometimes hip and knee, sometimes just one or the other.

Since last september I have been in a word 'lousy'. Knee won't settle down, neith will the hip. Hands joining in as well now. Had steriod injection late last year, and been to see the nurse 3 times since October. Now waiting for a consult for Ittrium injection to the knee.

So - what does the rheumy say. No - you do not have RA. There is no medical indications at all that my symptoms are systematic, and apparently despite the right knee being twice the size of the left - no physical evidence of swelling of the joints. There is some evidence of minor wear and tear to the knee on xray. Neg for RF all blood results are normal. So his original diagnosis of 'some kind of mono arthritis of the right knee' still stands and he doesn't see why that should change. Told him about the fatigue - especially the three month long spell that drove me to the GP earlier this year that he (the GP ) guessed could be possibly ME or Post Viral. Not sure the rheumy was listening any more at that point. Rhuemy suggest adding a painkiller to my prescription - rather than relying on paracetemol. He has given me Amytriptyline - apparently they will help the pain and help me sleep better (the hip and knee disturb my sleep). What are they I asked, as my GP tried to insist that I needed anti depressants and I was adament that I don't want to go down that route as I don't feel I am depressed - just pee'd off with the pain and the fatigue. Well they are used as anti depressants he said - but in higher doses.

The rheumy could give me no guidance of what is wrong with me if it's not RA. Just treat the symptoms he says. That's all well and good for some perhaps.

I just felt like I was being shuffled out of the door. He had written up my notes and signed them while I was till trying to ask questions.

Has anyone else had this experience? I know I am not making it up - I am in pain, my joints get hot and inflammed and stiff and hurt. It comes and goes, even within a couple of hours. as in waxes and wanes. Sometimes the hands can be fine for days - then for no apparent reason rings are tight, too tight to move, but at other times they rattle around to the point I am frightened I might loose them. Knee and hip are just so painful at times I could cry. When I get cold all my joints hurt - like when you get flu. Some days I just do not have any engergy. Is there any way I can find out what is wrong with me?

11 Replies

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  • I had this as my last appointment too so you are not alone. My rheumy tells me it's Fibro causing all of it, but she will see me again in 6 months to be sure. This is despite having millions of tests and being confirmed as sero-negative inflammatory arthritis. It shows as wear and tear on all my MRI and X-rays. I'm confused too. I take Amitriptyline and it send me off to sleep no problems, but I'm still in pain. You didn't say if they have stopped your meds? I also take Pregabalin for it having had all my RA meds stopped. I'm in so much pain it's untrue. I took photos is my swollen hands and emailed her but she said I have to wait to let these new meds start working properly. My symptoms match yours but I have the added bonus of Pernicious Anaemia which causes fatigue, body pain and brain fog too. I don't know what to suggest other than go see your GP to update them on the review you had and see what they come up with. Amitriptyline is an anti depressant but also a nerve blocker and it helps you to sleep. I'm not depressed but they do help me sleep. Angie.

  • Spuddie that is so bad - why would you have been on sulpha and then metx if you do not have ra. Did the consultant read your notes at all. I just cannot understand why they would say that when you have obviously swollen joints and the metx has probably been keeping your ra markers low.

    Spuddie i have only been diagnosed about 19/20 months but before that for quite a number of years i was running to the gp with exhaustion, joint pain and inflammation, i was diagnosed neurotic and depressed. i never had a blood test. I completely believed them and Over those years i spent a small fortune on private therapy, i really wanted to talk my way out of my misery, private physios, chiropractitioners, anyone who could help me to stop being neurotic. Then a locum saw me one day and sent me for blood tests and then i was referred to the rheummy and that was the start of my ra journey.

    That was a long winded way of saying i know where you are coming from, it is so demeaning and frustrating not to be seriously treated. And it is not good enough to just treat the symptons.

    Your last paragraph just sums up to me what it is like when you have a flare. Do you have the energy to look for another consultant or seek further advice from gp.

    Sending you all the support i can muster, hope you feel a bit better soon.

  • Sounds much like my ex-rheumatologist. I am two weeks away from my appointment with a new one, as when my GP and I read his last report,we agreed that a second opinion was in order. Definitely ask your GP to re-refer you. It's not difficult, there are no forms to fill in, s/he just does a new Choose and Book.

  • That sounds like a horror story,I really feel for you. I'm just at the beginning of my journey, my symptoms are just the same as yours,I even had to have a ring cut off once. This week it's a swollen neck knee & hip so very painful. My consultant said I don't have RA but OA, my gp says I don't have OA but won't discuss RA with me coz I'm under the hospital. The consultant has prescribed meds for RA,which I haven't taken as I'm confused. It sounds like good advice for you to seek a second opinion,I wish you luck x

  • Kentishlady - thank you for the suggestion about fibromyalgia, I have looked it up and see that a couple of other niggling things I have seen my GP about are symptoms for this. For about 18 months I have been getting a noise in my left ear - went to see the GP 3 times about it last year - 1st said inflammed middle ear, 2nd said no it's not, 3rd said yes it is. I was given a steriod spray and told that I need to 'pop' my ear to stop it. No matter how hard I try I can't make it go pop. It comes and goes, just like the other pains, swelling, stiffness etc. Sometimes there is a small sensation of pain around the ear, but nothing like earache.

    Mads, Dotty and Caza - I am going to go back to my GP. RA, OA, Fibromyalgia - whatever, I don't care what I have - I just want someone to sort out what is happening to me and how to treat or manage it properly.

    It's just so damned frustating. Health professionals just don't seem to be willing to use diagnosic skills anymore - are they so demoralised that they just go through the motions trying to get to the end of the day so they can just go home?

  • That's funny I get a crackling noise in my left ear,have had it for awhile,I spent ages looking to see what was making the sound before realizing it was coming from within. I've never mentioned it to my gp as it doesn't really bother me & didn't think it could be connected to everything else that's been going on. You sound very positive & determined let's us know how you get on & good luck x

  • Appointment made for next week - I would say fingers crossed, but......it hurts.

  • good luck for appt......really hope GP listens and uses his/her skills to try to work out what's wrong. and like Mads I wonder why they prescribed MTX and Sulpha if hey didn't think you had inflammatory arthritis? I really feel for you as it's bad enough being diagnosed with RA, but having all the pain and problems and no diagnosis must be even worse. it's also crazy that there's such a variation, both in the way our bodies react but more about the attitudes of the doctors. I think you might be right that the pressure on the NHS has knocked the stuffing out of some. of them. hope goes well next week. polly

  • I've choosen to wait until next thurs when I can see the GP that I felt did take the time to listen when I went there last.

    The crazy thing that I don't understand is the rheumy says 'NO, NO, NO....you are not rheumatic.....there is no medical evidence of inflamitory disease in you system.....you have mono arthritis of the right knee.....no not osteo.....arthritis which means inflamation of the joint.' But doesn't offer any explanation of what inflamatory joint problems you can have that don't show in your blood results......and if there is no inflamatory disease why oh why is he referring me for an Ittrium injection?

    He just does not seem interested in anything else, though the nurse did say there was evidence of 'bursitus' of the hip joint. I have been telling them for years that I get problems with my hands and feet - in fact the hands started first, easily 15 years ago. But this last 9 months or so have been so draining and difficult.

  • well if he believes that the knee is he main source of problems then Yttrium makes sense....maybe he thinks that hip and hands are separate problems?

    I found the attached about Yttrium.... make sure your rest after

    chsft.nhs.uk/WorkArea/Downl...

    polly

  • Hi Polly

    Thank you for the link - it is interesting to read some more info about the Yttrium injection. I have an appt for a consult about this in a couple of weeks.

    I get that he thinks the hands etc are a seperate problem, and get that he thinks the knee is the only joint affected by arthritis. If, indeed, all my other aches and pains and fatigue and not RA, well that could be a blessing. It just makes me really, really mad that all too often healthcare professionals - doctors, nurses and others - just won't take the time to explain things and insist on talking in medical jargon. I was a qualified nurse many years ago - I understand a lot of it, but not all, and things have changed over the years.

    I have tried googling inflamatory arthitis - and keep getting referred back to RA or psoratic arthitis and references to systemic indicators etc.

    I think I am just going to make a list of all my niggles, pains, swellings etc, - heat to toe - and give it to the gp, along with a list of questions.

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