first rheumatolist appointment yesterday

first rheumatolist appointment yesterday

i didn't know what to expect, and for four months i've been dreading it but it wasn't as scary as thought it would be.

i have a thing about needles, and i was dreading him jabbing them into my joints for a sample of synovial fluid but thankfully that didn't happen yesterday.

i listed all the joints which gave me grief - shoulders, elbows, wrists, hip knees, ankles, and a couple of fingers and after taking my medical history, and the joints which are effected, i wS told that the arthritis which i most likely have, is psoriatc arthritis - which is similar to rheumatoid as it is also an autoimmune inflamatory condition.

after a quick examination, he dissapeared out of the room and came back with an ultra sound machine.

i cant even remember which joint he looked at first - the knuckle on my index finger i think, not a joint thats bothered me much so i wasn't too surprised when nothing sinister showed up but i was shocked when the ultra sound didn't show any inflamation in my joints which are agony.

i don't even think there was that much inflamation in my achilles heels even though i now find it hard to walk because of pain!

i was frustrated! why the pain when there is no inflamation? i swear down that i'm not lying - the pain is horrible - it feels like something is trying to cut me up at my joints with a blunt knife!

he asked if i was having a good day, and i answered yes, it was a good day, because the day before i was really struggling, i nearly wet the bed in the morning because my joints refused to let me move - i crawled to the toilet on all fours that day!

i have another apointment for three months time, during my blood test (i can't remember what this one was for) asked the nurse if not finding inflamation was common in an inflamatory arthritis, as i have a lot of pain, but no inflamation showed up! and she said 'oh yes' i guess this is something she's used too.

so now it feels like my journey with this awful disease has 'officially' began.

i don't know what to expect, ive already hobbled down stoney roads and tripped a few times, i guess it's going to be a road where i won't see where i'm going so i'm going to take one step at a time, sometimes walking, sometimes crawling.

12 Replies

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  • Hi there,

    just want to say 'hello' to you as I've also been provisionally diagnosed with Psoriatic Arthritis (back in May this year). I did't think I had Psoriasis but the Rheumatologist thought that a nearly healed little rash on my elbow and two slightly manky toenails (I thought it was a fungal infection, if anything) were Psoriasis. The next step in the diagnostic process is an appointment with a Dermatologist but that's months away.

    Meanwhile the new Rheumatologist (the first one I saw was a Locum) seems to think I have RA and I'm inclined to agree.

    You know, I wasn't aware that ultrasound shows up inflammation .... I may well be wrong, though. I thought that raised ESR etc. are better indicators.

    Hope all goes well for you and that things get clearer, I'll be interested to hear what happens with your diagnosis.

    Christina xx

  • Hi, well done for surviviing the ordeal, it's horrible I know not even knowing which questions to ask, did they give you any treatment? I had ultrasound on a swollen joint sometime last year never heard anything more about it, it seem they do tests, check this and that and say good bye. Even with RA some rashes, spots or insect bites don't heal well, a miggy of some kind bit the inside of my hand early in the week, within a day from finger tips to wrists the pain was awful, and still the spots remain. I start MTX again monday so will follow you with interest. If they do stick a needle into a joint make sure its for painrelief, because it b****y hurts at the time but really works after the swelling goes down. I have RA and Fibromyalgia.

  • hi Feather, the rash with psoriasis is usually itchy and red with scaley bits which flake off. that. type is called plauqe psoriasis and it usually effects the scalp, elbows and knees, thats where i've got mine, i've also got patches on my ankles too.

    my left thumb nail has vertical ridges and the middle finger on my right hand has ridges.

    both of my little toe nails are grotesque! they are thick, ridged yellowy and seem to grow out of the middle of my toes but they don't have a fungal infection. one of my toe nails (the second toe) stopped growing and just fell out at the nail bed at around the same time that my joint pains started it grew back though! i also had an awful horizonal lump on my left thumb around that time too, i didn't think it was conected but when i think about it thats when my thumb nail started to grow with ridges.

    pitted nails and ridges are a sign of psoriatc arthrits.

    caggy, my own doctor has given me tramadol for the pain - i sometimes top it up with paracetamol. i can't take codiene or asprin because it effects my breathing. i tried ibrobrofen years ago for something else and it did the same but i could also taste blood so i've got to be careful with those. i'm really scared to take them!

    i told my rheumatoligist about the problem with my left shoulder - i have weakness and limited movement in it and he offered me a steroid injection into the joint, and a muscle injection on my bum for my other joint pains.

    i was a tremblimg wreck at the thought of the needle - i know i'm going to have to get past this needle phobia, but there's something about having needles put into veins or joints that terrify me. musle injections don't give me that fear.

    i couldn't face it and when he went out of he room to get the ultra sound machine i'd been crying when he'd come back.

    he decided to just do the ultra sound and said something about pysiotherapy on my shoulder, i couldnt take it in. i expected a joint fluid sample so i had plenty of time to prepare but i was petrified! i'm a coward! lol.

  • Hi I new here to,I had my rheumy appointment in April,since then I have had blood test on what seems like every part of my body,scans on my hands,where the cocky man said no-inflammation showing and like you my hands were hurting he made me feel a fake!!! Went to my dr this week about something else and she gave me all my results. Saying I still had high inflammation levels,and if I was not told this week that I had ra. Then she would eat her hat,I have found this website. Very useful. And friendly and we are able to ask lots and someone is always keen to give advice,sending you gentle hugs xxx

  • i'm glad that i found this website too sheenerweener!

    inflamatory diseases can make us feel very isolated.

    i'm sorry to hear that your rheumatoligst was cocky - i've had a few appointments with arogant doctors too who think that know my body better than i do.

    i really hate going to any doctor so when i show up, and especially when i ask for painkillers, then there is deffinatly something wrong!

    luckily for me my rheumatolist seemed to be listening and believed me when i said i was in pain.

  • Hi there, One of (the many!) weird things about this disease is how many of us find that our blood tests results, pain and inflammation just don't match up. And that seems to be the same for PA and RA. I'm the opposite to you as my blood levels are relatively stable, but often on ultrasound I have inflammation. Just last week i was having lots of problems and pain, and phoned the nurse who happily said that I was fine because my last blood test was fine. Huh!

    Ultrasound is actually the best thing for seeing whether you have active inflammation. And rather than feeling bad that it's not showing up anything even tho' you feel rubbish you should feel good as it means that it may hurt but your joints aren't being damaged.

    But as for the needles, you do need to try to find a way to be brave about it as they are part of our lives. I hate them too and have developed a tapping technique that distracts me for long enough. But they don't often take samples of synovial fluid, no matter what the books say, so don't worry too much about that being sprung on you.

    Interesting about your nails tho'. I've been diagnosed with RA, but have a very scabby toenail that I've always thought was a fungal infection. Maybe it isn't? But then the rheumy often prods my feet but has never mentioned it - and it's pretty obvious.

    Hope they've started you on some meds tho'. Good luck, Polly

  • thank you helixhelix,

    i am really glad that i haven't had any joint damage through inflamation, the only thing which worries me, is when they get normal results some doctors won't accept that we have pain.

    i was feeling lousy, out of sorts and i went to a gp and because i wasn't anemic i was told something along the line of it being because i wasn't getting any mental stimulation and my brain was like an unused muscle which wasting away!

    complete and utter BS and very offensive! i wouldnt call typing the same word twice or cutting off mid sentance when i was talking 'being mentally lazy'

    most of the doctors at my gp's practice want solid lab proof or they don't believe me. or at least, that's how they've made me feel.

    i even appoligised to the rheumatolist and blamed the tramadol for making me feel out of it and woozy - it wasn't the tramadol, i felt like that before i'd started taking it.

    for years, i've suffered from another auto imunne disorder - chronic idiopathic urticaria, it makes me feel ill but the doctors just down play it and think it's an itchy rash - mine isn't itchy - it's sore, and i feel like i've been hit by a truck!

    i googled 'urticatia and rheumatoid arthritis' last week and it can be an early sign. whatever it is i've got, it's obvious that there's something wrong for my skin to be inflamed and my joints to hurt.

    my doctor suggested that the urticaria could have raised my esr levels but it never did that before.

    every day is a struggle in one way or the other.

  • It is hellish this feeling of not being believed isn't it? When I went for my telemedicine consultation the physio examined my joints and watched for my reaction. She only found inflammation in two of my hand joints and one wrist - but plenty of tenderness.

    I always think of this - when 2 out of 3 of my sons broke their wrists it took ages for them to be diagnosed because of lack of inflammation and because they were able to do something with crossing their arms to shoulders. The middle one went un-x-rayed for 3 days and the youngest son went un-xrayed for a month by which time it had mostly healed by itself. In both cases they broke their wrists at school and in both cases their class teachers were absolutely sure they had broken them - as was I. The locum GP mocked me for going back 3 times to see her with him - ask for an x-ray - but a month later he screamed with pain when he pulled something and my GP sent him straight for an x-ray and lo and behold it had been a full break all along and I'd been made to feel a fool by this GP and also by a hospital doctor using the same method to diagnose him.

    I use story this now to tell myself that these extremely well paid people can be stupid and inflexible and many don't trust their patient's instincts nearly enough. Surely it's better to rely on what we say than to risk getting it wrong and having to see a patient suffer terribly for their mistake?

    My consultant said it's important to treat the patient not to just treat the blood when we spoke about my consistently high ESR recently. I fully agree but if a patient doesn't show inflammation in their joints but is still in pain then there are other ways that inflammation can show up so these shouldn't be ignored either! I wish mine used ultrasound as it would be interesting to know. Also tendons can be inflamed with RA but the physio only checked the joint rather than surrounding areas? Tilda xx

  • Your last sentence Tilda, is the answer to this inflammation of joints discussiion. It is often tendonitis, very common in RA and PA, that rears its raunchy head. Good that the joint is free of inflamation at the moment, but the tendonitis hurts like he--! And needs to be treated! Lxxx

  • the rheumatoligst actually scanned my heels, well he took me into another room with another ultra sound with a bigger sceen and a radiographer(?) scanned my knees and ankles

    i thought i heard them saying something about mild inflamation in my acchilles tendons but then i think they changed their minds.

    i don't understand because when i've felt the back of my heels their is a knotty lump on the tendon and it *explicit removed* painful.

    i'll hopefully find out more with my gp appointment on tuesday, at least i've managed to get an appointment with one of the better doctors on her day in

  • Hi Ratturattus - I'm not sure whether you feel satisfied by the diagnosis of PA or not? It is just as serious as RA I believe and you should now be offered the same DMARDs as RA patients so in a sense does it matter which type of inflammatory arthritis it actually is? My rheumy said that it's not that important the main thing is how it's treated and you don't mention if you are going straight on MTX or a different DMARD now or whether you have to wait a further 3 months before they can start you on appropriate medication? I think you should ask your GP to push for you because the sooner you start the disease modifying drugs the better. Are your ESR and CRPs raised when taken because that would be a good indication that there is hidden inflammation? I do really believe that for some people inflammation shows much more than for others. Apart from my hands and ankle tendon recently I've had very little visible inflammation since all this started but my ESR has been consistently elevated at between 30 and 70 so they know something is going on with me. Also I do have a positive rheumatoid factor where I believe that with PA it is invariably sero-negative. Tilda x

  • i'm not satisfied at any 'arthritis' diagnosis TildaT - i just want anwers and reasons for my joint pains and problems.

    i'm finding it very hard coming to terms with not being able to do simple things anymore.

    i can't go for walks anymore :( i can't even pour the kettle unless i hold it with two hands!

    im bored out of my mind and i'd love to go for a walk to feed the horses in the field a few carrots or squirell spotting by the riverside - its too painful to walk and it doesn't ease up if i keep walking - it gets worse.

    my last esr was 30 and that was the one that got me the referal to a rheumatoligist.

    i don't know what crp is or if it was taken :(

    i expected to be tested for the rheumatoid factor but they didn't say if they did or not.

    this is all new to me - i haven't even 'officially' been diagnosed, the rheumatoligst just said that it's more likely to be pa rather than ra.

    for months i've alternated between the two of them in my head. knowing deep down it had to be one of them.

    i really expected something to show up on the ultrasound - i'm reading on the internet that it's an excellent diagnostic tool but the rheumatoigist also said sometimes the scans can be a bit crude.

    he wants to try the scan again in three months, i am frustrated to hell with it because i'm finding it hard to cope on just the tramadol but i think he wants too see some deffinite joint inflamation first.

    i haven't been offered any meds to stop the disease getting worse. the only thing i was offered was the steroid jabs.

    i feel like a total coward being unable to handle the joint jab, i've even looked on youtube so that i can lose some of that fear but watching an elderly man screaming in pain when then tried to give him an injection into his joint on some real life casualty programme on tv has made my fear worse :(

    i think the needle phobia started at school when the nurse used the same blunt needle on all of us for a ruebella inocculation.. some of us got jabbed more than once because the needle just would not pierce our skins :(

    i'll ask my doctor whats going io on tuesday,hopefully the rheumatolist will have given her some more information..

    i really appriciate all the support and advice i've been given so far. i find it hard to ask for help and support but i'm so defeated by this afwul disease. i'm really overwhelmed by your kindness and support :)

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