First rheumatologist app on Tuesday and I'm panicking!

Rach101

Hi all, I'm sorry to make a fuss but I've got my first appointment with the rheumatologist on Tuesday and I'm seriously freaking out. I've been so ill and in so much pain for the past 3 months that I've been off work the whole time. I'm pleased I've got an appointment and really hope s/he will be able to help me but I'm so worried that they'll send me away without answers or treatment. I know I've got to wait and see what they say but how do I make sure they take me seriously? Ive got swelling in all my joints, esp hands and feet, wrists and ankles but my dr has largely dismissed it saying it's only minor. Although I'm scared of being diagnosed with a long term condition I'm equally scared they'll send me away saying it's nothing to worry about but without help I'll still be suffering and I desperately need to get back to work before they dismiss me. Are my fears unfounded or if not how can I make sure they help me? Thanks Rachel

[Deleted User]

Hi Rach 101,

Welcome to the forum! Everyone who uses the forum have, or know someone in their family who has arthritis. All those people were once like you, a bit bewildered and waiting for a diagnosis.

You probably know there are many types of arthritis and there are broadly two types of medication, for pain management and disease control. Seeing a rheumatoid consultant is what you need so it's great that has been arranged.

You will get advice on how to manage that appt from members soon. There is also the helpline here at AC. Phone number is at the top of each page, they are friendly, welcoming and very knowledgeable too

Any problems with using the forum please let us mods know and we will help you

Take care
Mod Yvonne x

Megrose2

Hi Rachel.

I can quite understand how you feel about your appointment when you've been poorly and off work for so long.

Before any appointment, I always sit down and think about my symptoms, how long I have had them - with dates, if possible - and how they have affected me. Then I write it down, sometimes on the back of a postcard, so it doesn't look too daunting to the consultant, rather than taking out wads of A4! Next, I write down any questions I want to ask the consultant. I take this with me to the appointment, so that I'm clear about my symptoms and can refer to it when the consultant asks questions. I can then ask my questions and not be worried about forgetting anything. It's time well spent in putting it together.

It's also a good idea, if possible, to have a partner or friend go with you, as they can often remember things you may forget.

Another thing I do is to repeat back to the consultant what he is going to do before I leave, so that it's clear in my own mind what the outcome of the appointment has been.

I hope this has helped somewhat and your appointment goes well. Take care and do let us know how you get on.

Meg

Rach101

Thanks Meg, thats really helpful. Ill spend some time preparing today.

I'm worried about not being taken seriously as i imagine many people are much worse off than me but it's having such a bad effect on my life. I like the postcard idea, i will write down the things i definitely want answers to before leaving and hopefully that will make me feel more confident that i wont be fobbed off. I was hoping my husband would come with me but he cant get the time off work. My parents are giving me a lift though so I'll have some support.

My appointment is only 30 mins long, is that usual? I had read that they usually do x rays at the first appointment at this particular clinic/hospital but cant see how there'd be time?

Thanks again for your help

Rachel x

dreamdaisy

I can understand the nerves, that is entirely usual if you are coming at this from a healthy background (good health prepares you not one jot for when things take a wrong turn). That sounds like a pretty good length of time for your appointment, what they do at my hospital, if an Xray is deemed necessary, is give me the forms during the appointment and I trot off to that department after I'm done. Have you had some bloods done already? They may want others doing after they have seen you so again you may be given the forms there and then.

The positive is that you are seeing someone in the early days - I know from reading on here (and seeing people in the waiting room when I'm going to rheumatology which I've done since 2002) that the sooner one begins the meds the better the outcome may be. Take your notes and someone with you to act as a second pair of ears (in case yours don't work too well due to stress). Diagnosing an auto-immune process can take some time if you don't present with the right symptoms in the right places (there are around 300 kinds of auto-immune inflammatory troubles) but, if they feel that something is not as it should be, you should be started on medication sooner rather than later. Please let us know how you get on. DD

stickywicket

I can 'hear' the panic in your post. You have an appointment which you very much hope will 'sort out' your problems, or at least establish the cause and enable you to get back to something like normal.

I think the chances of you being 'fobbed off' are minimal. It would be in no-one's interests. But the chances of you coming away with no definite diagnosis are quite high. The different forms of auto-immune arthritis can be very difficult to differentiate until / unless something happens to make things clear. That doesn't really matter. Many live for years with a broad heading of 'inflammatory arthritis'. The meds are the same.

If you do the things that Megrose suggested you will have done all you can. Don't worry about the length of the appointment time. That's probably just for your time in rheumatology and won't take count of time spent in x-ray, haemotology etc. In any case, you can't alter it.

I understand your desire to get back to work but one thing at a time. Stress just makes everything worse. If your parents are giving you a lift then maybe one of them could go in with you as an extra pair of ears? Let's know how you get on.

Rach101

Thanks everyone for your replies, I am feeling slightly calmer now!

I have got a couple of postcards and written key points on one and key questions on the other to help me.

I've had 3 sets of blood tests, will the rheumatologist have access to these? I know my CRP levels were 10, 1 and 42 and that I was slightly anaemic in the second ones but no other details.

I've been so worried as I've had an absence review meeting with work and have another one coming up. Apparently we've got to repeat the first meeting as my area manager didn't follow correct procedure. She sent me a flowchart which was scary as it shows I should have two absence review meetings and then there'll be an absence hearing where they could dismiss me. Apparently I could appeal a decision to dismiss me if they haven't followed correct procedure so I guess that's why she's repeating the first meeting. I've been trying to return to work even for just a couple hours a week but they want me fully fit before returning. I have another GP app on Thursday and an OH meeting on Monday so I'm hoping to get a plan in place then. I have my absence review meeting after that. Do you think I should contact my Union? Do any of you manage to work? I'm on my feet at work all day which makes it difficult

Thanks again, I'll let you know how I get on tomorrow

Rachel x

dreamdaisy

You are more than welcome and thank you for the thank you, all of us on here are struggling and it's lovely to receive an acknowledgement of our efforts. I am positive the rheumatologist will have access to your blood results and well done on sorting out the postcards: that can be daunting in itself because it focuses thoughts on the bad things but has to be done.

I cannot help on the work front because my troubles started a few months after I set up my own little business. Initially I was a mobile tutor for dyslexics but, within three years, the dyslexics had to come to me: they did and, luckily, my boss was very reasonable and understood what was going on.

A CRP of 42 is a little high but the variety of your results on this measure reflects the variable nature of our conditions - rheumatologists are aware of this and will take it into account. Tomorrow is a very big deal but may not end in a big result: I will be thinking of you. DD

dreamdaisy

Hello, how did you get on? I've been thinking of you. DD

Rach101

Hi DD and all

I felt that the appointment went well, the Dr was interested and gave me time to answer his questions, they had a questionnaire to fill in about the effects on my life and he did a very thorough physical examination. One strange thing is that the swelling I have is actually just above all the affected joints, I didn't realise until yesterday that this is unusual, IE I have swelling between my finger joints, above my wrists and ankles, knees etc, has anybody else heard of this before? Guess I always have to be different!

The dr said my arthritis could be post viral in which case it'll improve on its own or it could be early rheumatoid in which case they can treat it successfully. They did more accurate blood tests to check for inflammation and x rays and they're going to send me another appointment for ultrasound to check the joints more thoroughly for inflammation (as he couldn't feel inflammation manually). I've also got better anti-inflammatories/painkillers to help me get back to work which is good.

So in some ways I'm not really much further on but I was very reassured by the dr and all the staff there that they're taking me seriously and I'm in good hands.

I'm seeing my GP tomorrow and hoping to return to work on short shifts/light duties so I'll see what he says. My area manager said yesterday that they would do all they can to facilitate this, just hope I'm up to it as I've had good days before but they've been short lived! Trying to sort out support from my Union for the sickness absence meeting but no luck so far. (Have downloaded the booklets though thanks Sharon)

Thanks again for your support

Rachel xx

dreamdaisy

That does indeed sound like a good appointment, it was good you were given so much time. I found your comment about swelling being above the affected joints interesting - it always was with me. My troubles began just above my left knee, that area grew and grew and grew but all above the kneecap, it became so large I could only wear skirts or leggings: if the latter it looked as though I had crammed a cauliflower down my left leg! I don't have any swelling now thanks to my medications but, should something have a go, it's always above the joint that hurts. I must learn some anatomy to find out why!

Arthritis triggered by an infection is known as Reactive Arthritis and yes, it can clear up but may well come back if another infection is incurred: were you ill before this started? Overall I think you are further forward than you were - you have been listened to and taken seriously so that must be a relief in itself. The next steps being taken are essential and I hope the stronger medication helps. I cannot help on the work front as I was self-employed (I had a lovely boss ) but I hope you are soon able to return: arthritis can upset our lives but we have to forge on regardless and not reward it by ceding to its outrageous demands. DD

stickywicket

I, too, think that was good and I'm very pleased for you. I hope all goes well both with the GP and work.

Megrose2

That all sounds very positive and I'm pleased that it went so well. I hope that you get things sorted out at work and that your GP is helpful. Take care.

Meg

Rach101

Hi DD, thanks for your reply, I've only just seen it for some reason! It's interesting that your swelling was above the affected joints too! I have swelling above both knees and my knees look huge! I Definitely get the cauliflower analogy. It's nice to know it's not just me. I guess that's why this forum is so helpful as we can share experiences with one another. I've got my next app through now in 2 weeks time. It doesn't say it's for ultrasound but I assume it is as that's what the first rheumatologist said. It says it's a rheumatology RA clinic and rapid access but I assume that doesn't necessarily mean they think it is RA? I'm so paranoid atm I worry about everything!

No, I felt very well before my joint pain started. I'm a keen runner (usually) and had run a local half marathon 10 days prior. I found it harder than usual and felt more tired after but that was it. That's why I've found it hard to believe it's post viral but I did have a swollen lymph node on my neck when I was first ill which may indicate a virus? It's a worry if it is reactive arthritis as it makes the future seem very uncertain. How can I make plans if I could be struck down without warning at any time? Mind you, RA isn't a better alternative

Thanks again for your reply

Rach xx

dreamdaisy

I was 'lucky' in that I was born (1959) with an auto-immune trouble (eczema), then went on to develop more in the form of asthma when I was seven, so this nonsense is just more of the same. The drugs that are now routine to treat asthma etc. hadn't been invented so that was not fun. My body has never liked the world it's in and punishes me, it always has and always will, I have not experienced a life where nothing was wrong health-wise so this must be very difficult for you to get to grips with what is currently happening. I remember reading a quote that ran along the lines of 'Good health is the crown on a well man's head but only an ill man can see it.'

Nobody, be they king or pauper, has a certain and defined future but us humans like to make plans - to see those plans being apparently dashed due to health concerns is an affront. This shouldn't be happening to you should it? Like wise it shouldn't be happening to anyone else on here but it is. It is shocking to find that you may be in the process of joining a club that nobody voluntarily signed up for. We cannot choose to be well, we do not choose to be ill but stuff happens regardless of our wishes. :roll:

Because I'm now in my twentieth year of arthritis I know exactly what my future is and it's up to me to make the best of it. I've had some rough times but I've also had better times, we all do. It's a steep learning curve but we've all experienced that so, hopefully, we will be able to help you with yours. DD

Rach101

I can't imagine a lifetime of ill health but I was ill for 5 years in my 20s with M.E. I was severely affected for the first two years and was house bound, giving up a very hard won first career in law and missing out on being an active mum with my children who were young at the time. I then had 3 years where I was able to have a better life though still not able to work before making a full recovery.

That was 8 years ago now and I can honestly say those last 8 years have been a total blast! I valued my good health so much, every day I felt lucky to be alive and well and I couldn't believe I was able to run! I started a second career in the library service which I absolutely loved and my life seemed perfect! I knew how lucky I was and with that knowledge I really made the most of every day.

You've reminded me that I'm still lucky, that I had that time, that I had the experience of sheer vibrant health and thank goodness I made the most of it so I have no regrets now. I didn't expect those times to end and it's been a shock to say the least, but I have a lot to be thankful for, so many people have dealt with lifetime ill health and I thank you for reminding me DD. I was really feeling sorry for myself but you've made me feel grateful xx

dreamdaisy

There's absolutely nothing wrong with feeling sorry for oneself as long as it does not become a habit - that is the quickest way to lose interest and support from friends and family.

I might be wrong on this but I think I recall some debate some time ago about whether ME had an auto-immune root, I know it divided medical opinion as to its validity (and maybe still does). The human body is a weird and wonderful thing, in my experience mostly weird. After eight lovely healthy and active years to find yourself plunging back into the murky waters of not being well, possibly on a long-term basis, must be horrid. One of the 'joys' of RctA is that is does clear and keeping oneself clear of further infections is not impossible. I maintain a reasonably stringent routine of hand washing, anti-bac wiping surfaces and liberally dousing visitors with hand gel and rarely fall properly ill.

At its most rotund my left knee achieved the mighty girth of 27" in circumference, I first saw orthopaedics when it was a mere 24", they referred me to rheumatology who referred me back so that lost another year of potential treatment; the swelling was all inflammation, both liquid and solidified. I wish I had taken a picture but I do know that my surgeon took many through the first synovectomy operation and it's now in orthopaedic textbooks - fame at last!

I know I have a long-term condition which has caused joint damage, causes constant pain and tiredness but in myself I actually feel reasonably well, which is why when people ask me how I am I usually reply 'I'm OK, I could be better and I'm pleased I'm not worse.' because that is true. I am also fortunate in that I only have me and The Spouse to look after which makes things a little easier! DD