How my first appointment went.....

[ellybw]

Well that's it.

I haven't written this straight after my appointment as I needed to get my head around it and what it all means.

My appointment was last week, the 23rd.

I went in with a relatively open mind. Not expecting a lot.

I had written every thing down as so many people have said too.

When I first got there I was sent down to a little room to have my height, weight, BMI and urine tested. (I knew the results of two of these before they did them - yes I know I need to loose a bit!)

Then I went in to see the consultant.

His first question (words) to me were What can I do to help you? Which if I am honest annoyed me a bit. Surely he should know, he should have some knowledge of why I was there. Never the less, I started to explain, using the notes I had made, what has been happening and my immediate reaction as I spoke was that he couldn't care less. I was liking him less and less. He listened, kind of, his eyes all over the place, and then when I had finished he asked to examine me. I was told to undress, taking off my jeans, boots and socks.

He then started to push and prod all of my joints in turn. Moving my shoulder to it's limit, which isn't far at the moment and then working his way all over my body, pushing here and there, seeing what hurts and what didn't. Some places didn't hurt at first but after he had moved them and manipulated them they did the second time he touched them.

I really hadn't expected to get any sort of diagnosis, but really just expected him to examine me, do more tests and some x-rays etc, which he did do.

Before I went and had more blood taken and went for x-rays, he sat me down and told me what he thought.

Inflammatory arthritis /possibly rheumatoid and /or Fibromyalgia. Not what I expected at all.

He has put me on amitriptyline, 10mg for the first week and then increasing the dose by 10mg each week up to 50mg if needed. I upped the dose to 20mg last night as for the last few nights I haven't slept well, but the shoulder pain has decreased and isn't waking me at night as much as it was. I am still experiencing pain elsewhere, mainly in my right foot lately but the NSAID's do seem to help get me through my day at work at least. Though on Friday I struggled to drive home, as it was killing and having my foot on the accelerator was so painful. As for the fatigue, it's still bad, I still nap everyday and still then feel knackered and hubby has had to wake me to tell me to go to bed, after falling asleep on the sofa for the last few nights!

I have to return in 12 weeks, so I guess really I am only a little further ahead.....we will wait and see.

[Hidden]

It is start? not much of diagnosis.. sounds bit like mine!, you need some painkillers prescribed?! eg paracetamol/ codeine. nsaids as you probably know are anti inflamatory pain killers and can be used with ordinary pain killers and steroids

. Amitripyline helps with mainly nerve pain it is used for both inflammatory arthritis and fibromyalgia x

Tiredness goes with ra and fibromylagia

Welcome to the site xx

[ellybw]

Thanks for the comment, I was thinking of returning to the doctor to get some painkillers and to get signed off from work as I am really struggling to do the job at the moment (teacher). Have spent most of the day today asleep on the sofa!!

[earthwitch]

If the NSAIDs have made any kind of difference, then do make sure you tell him that when you see him again - thats a really good indication that it is some kind of inflammatory arthritis. Just bear in mind that there are two main types of inflammatory arthritis - rheumatoid, and spondyloarthritis (which is seronegative, which means that you don't normally show positive for the things you would if it was RA). You can also have seronegative RA if your xrays show the kind of damage expected but blood tests are negative. So don't let him dismiss you if you do end up with nothing showing on your blood tests.

The amitryptylline will be contributing to making you sleepy as well as the possible fibromyalgia, but the good news with the amitryp. is that you do get used to it quite quickly. It should have an effect on pain at anything from 10 to 25 mg a day, so don't be in a hurry to increase it too fast right up to the 50 mg - you may find that only 20 or 30 is plenty. I do know folk who just take 10 mg a day and that is enough. It won't get rid of all pain though - you need other meds to control the disease properly for that to happen.

[ellybw in reply to earthwitch]

I knew from my G that my RF factor was borderline positive and also found out when seeing the consultant that so are my CRP results. He did my bloods again so I am guessing that he will wait and see what they come back as. Have upped to 20mg of amitriptyline as the 10mg wasn't doing anything after the first couple of nights, but am not intending to rush up to 50mg as I think I may struggle to get up at all in the morning!! Find that the NSAID's (Ecotodlac (Lodine) SR 600mg) are good but I take them at 7am before I go to work, but by the time I get home they are wearing off and then I'm in pain all evening! Will have to get GP appointment.

[Hidden]

I don't quite know what you were expecting but that appointment sounds quite good to me really. It sounds as if he was thorough and was doing what all rheumatologists do - trying to piece together the jigsaw in order to make a diagnosis but not wanting to get you onto disease modifying drugs without being more certain. I too had a low positive rheumatoid factor and a negative anti-CCP so the first appointment was quite like yours and he just said "inconclusive - but something's certainly going on". He told me that a low positive rheumatoid factor, high inflammatory markers and polyarthritis that had lessened after a steroid injection weren't enough to warrant putting me on Methotrexate just yet. Four months later, despite my anti-ccp being negative, he diagnosed RA, based on what he saw and felt on examination and my high inflammatory markers.

It's a very complex area of medicine. Good luck with the amitriptyline - I take 10mg some nights, occasionally 20mg and once 3 tablets but it does make me very woozy next day so I take it early if at all. It's a balancing act between sleeping well but feeling tired the next day and sleeping badly and feeling tired the next day. Hope everything settles down for you soon and if it doesn't I hope you get a diagnosis soon (12 weeks is soon in my experience of rheumatology!). Tilda x

[ellybw in reply to Hidden]

Thanks Tilda, I wasn't expecting a diagnosis at all, so I guess, now looking back that it was quite a positive experience.

[Hidden]

Well its positive not to have inflammatory arthritis for certain yet and not to be on cytotoxic drugs yet. On the other hand you do want to be on them soon if you definitely have inflammatory arthritis so I suggest you keep a diary of symptoms and read as much as you can about it all. Its an emotional rollercoaster whichever way it goes but you really do want to feel as confident in the diagnosis you receive as possible - otherwise you end up like me - much better, almost pain free but always wondering if you actually have RA and really need to be taking these drugs. Good luck and stay around! Tilda x

[cathie]

I worked as a teacher and its not easy to cope with RA. It depends on what/where you work, and whether you can get support from other members of staff. My students were quite old (university) and one group really related strongly to me and gave me a lot of support so there was never any criticism. But it was hard at times and limiting. I wish I'd taken time off work initially to get treatment sorted but that's not easy to do us it.

[Hidden]

for my first appointment, no nurse, no tests, no examination, just 10 mins with a doctor who plainly just wanted to get rid of me!

I hope when you go back you get a better understanding, and hopefully a more human Doctor!

Good luck, Cazx

[nottsexsportfanatic]

Each consultant, doctor and rheumy nurse I have seen have been so different. Some nicer than others. My gp diagnosed my ra based on blood results and family history so when I saw my consultant for my referral appountment I, like u was confused by their reluctance to diagnose immediately. But like tilda said above its a difficult complex disease with scary implications ie meds. I am therefore now glad they were sure of my diagnosis b4 prescribing.

I teach at my local college so understand how tiring the job is. Combined with amitryp and ra it inititially felt impossible to cope. I did take 3 months off to allow meds to start to kick but then started back on a phased return basis so that might b worth looking into.

Hope u get diagnosis clarified soon so u can start to feel better.

[Neonkitty]

Sounds like the consultant has been very thorough. I had exactly the same, seeing how far my joints would move. Even had a consultant tap them with a little hammer (grrr!). Don't know if hey would do that now!!!. That was was eighteen years ago! I suffered from stiffness immobility and pain for nine months and just on basic painkillers before they found a positive Rheumatoid Factor. I was going mad and my husband said he was coming in with me next appointment to tell them I definitely had RA! I dreaded this naturally. He didn't have to as suddenly my blood tested Positive. My knees and joints were all of a sudden red and angry. Consultant said that before, they couldn't give me a DMARD until I had a positive Rheumatoid factor. I think communicating with the doc and Consultant how you feel is vital, and if it gets worse phone them and let them know. I sat there and hoped it would go away.

What I am saying is that initial confusing and worrying part is something they cannot always remedy quickly for us if there aren't enough factors or evidence pointing to RA etc. I hope you are soon not in pain and whatever is making your joints so troublesome Is found, and a plan to help and manage it soon made. I think the fact you are working and driving whilst all this is happening is remarkable. No wonder you are tired though. Try rest too Good luck.

Neon Kitty x