What should I expect at the rheumatologists and is there any specific questions I should ask?

Hi, I am new on here and was just wondering what to expect when I go to the rheumatologist. I went to the doctors a month or so ago with unexplained bruising and really itchy sores on my feet. I came away, a week or so and blood tests later, with Raynaud's and scleroderma. I now have an appointment with a rheumatologist at the end of the month. The Raynaud's I had guessed but I had never heard of scleroderma and although I am not a worrying kind of person I now fear the unknown, especially as I have two young children one of whom has health issues of their own. Having done some research I realise I've had symptoms for some time now but thought they were normal or put them down to other things. All makes sense now. I have, amongst others, muscle aching and stiffness, painful joints (although not too bad), tiredness, shortness of breath and my little fingers seem to almost lock sometimes.....strange feeling. I really don't know what to expect when I see the rheumatologist. What further tests will be done, how long does it take, are there any specific questions I should ask? Sorry for all the questions. I guess I'm just feeling a little uncertain as I know this disease can get quite complex.

11 Replies

  • Hi I am really sorry you are not feeling well. I am not sure if you have had a diagnosis of Scleroderma from your Rheumatologist or whether this is your first visit and consultation. It is very frightening to be confronted by such a disease especially with young children. Mine were 3, 2 and under 1 when I was diagnosed and that first week my husband and I just cried. That was 13 years ago and I am still here. I have lung involvement and see the wonderful team at the Royal Brompton in London for expert care. I have the usual gastro and liver involvement and my teams for that and scleroderma are based at The Royal Free in London. I am well informed and am my own advocate. This site is full of wonderful people who are all part of a club in which no one wants membership. There is also The Raynauds and Scleroderma Association and The Scleroderma Society that provide wonderful support, specialist nurses and fundraising for essential research. Both groups have web sites and are having a joint AGM in Manchester in June which is focused at patients and have an expert panel and a Q and A session after.

    Please however, if you have specific questions here and you will get a reply. i wish you and your family all the best. Please keep positive as it really does help. Best wishes.


  • Hi

    Helen has given you a very good run down on what is available as support and guidance and if you are in the UK and close enough to London then the Royal Free and the Brompton are the pinnacle of good care. If you live somewhere else, like I do, then things may be different for you. No matter where you are the emphasis is the same however, education, education and the services of the best medical team you can get. Having a good GP is important too. A GP who is already au fait with Sclero is best but failing that, one who is prepared to learn. We are such rare birds that it is not easy to find a GP who has had other patients with Sclero. On top of all that almost every Scleroderma Patient is different from the next one. Some things we share and others we don't,there are as many variations as there are sufferers.

    On the bright side I am now 71 and still living independently with my husband as my main support. I need help with the shopping and in fact hardly ever do any!! Housework is off my jobs list too but I can drive the car as long as I know where I am going to park and don't have to walk far. I make the dinner each day, do the laundry, fill my days with crafty hobbies and reading and spend a fair bit of time on the computer. We have 2 grown children and 3 grandies and earlier in life my husband had his own business and I ran the household - not very different from others of my friends, with the exception that I couldn't go back to work once the children were at school.

    On line support groups are wonderful because no matter how hard it is to get out of bed you can be in touch with others who will 'talk' with you and help you get through the day.

    Best of luck, be strong and know you are not alone.


  • I suggest you write all your questions down on paper and take it to the rheumatologist who is the right person to give you answers. By the way I am 85.

  • My first appointment was straightforward, questions and questions, then a brief examination. Depends on the severity of your Raynauds. After the chat - it was quite beneficial as I was able to pinpoint when it all started.

    I go about every six months, last time was January and now in need of Hand Therapy - that appointment is the 13th April.

    I have no experience of Scleroderma.

  • Hi

    Thanks for all the info and advice, I think this site is going to be very helpful. This will be my first visit and consultation with the rheumatologist Helen but I have had a positive blood test for sclero. Having spoken to my Dr (Who only knows the basics but is very nice and willing to help) and researching on the appropriate sites I feel everything that has been going on with my body now falls into place. Thankfully I am currently very much independent but I am increasingly noticing that I cannot do the physical things quite like I used to. Its great to hear that you are all still here to tell the tale, it gives me hope. Judyt, I live in the north of the UK so unfortunately not near London which sounds like the best place to be!! So what tends to happen at/follow the initial consultation?

  • Hello, don't know exactly where in the North you are, but there are teams specialising in Scleroderma at Newcastle, Chapel Allerton (Leeds) and Salford (Manchester). I attend Chapel All and they are very good.

  • I would expect just what Amy has described, lots of questions about how you feel and what happens with you in various situations. An examination, probably just of your hands, feet, face and arms because those are the places the skin changes come first. That is if there are any skin changes. I have almost none except in the tips of my fingers and I think that was one reason why I didn't get a diagnosis, except that the first thing that happened was Raynauds and changes to my fingertips. Unfortunately I consulted a Dermatologist, admittedly a well known one here, who had no idea what he was seeing and gave me antibiotics!!!!!!!!!!!!!! Dermatologist seems to be the first port of call for skin changes but NOT for us!! You should expect to be referred for anEchocardiogram of your heart (ultrasound), lung function and possibly a Gastroenteroscopy if you have signs of reflux. I had serious reflux but was totally unaware of it until it had done damage to my Oesophagus and I had trouble swallowing. Best to make sure you have a Gastroenteroscopy just to be sure, you may be surprised.

    Take your husband if he is willing. Mine never is but he is still my rock and I would never cope without his co-operation. He will not complain at being woken at all sorts of ungodly hours of the night to take me to A&E or to take over the meal making or laundry. He does all the shopping these days but when the children were little he was too busy and that was hard. We did have somebody in to do the housework once a week and I did what I could outside in the garden. We live in NZ so it is very different from the UK grass grows fast here and so do weeds and I love a pretty garden so that was what took up my days while the children were at school. Actually I did the garden until 3 years ago, but still kept our housekeeper person!!!!!

    Anyway back to your consultation, if your husband can come it will prevent you having to try to remember everything to tell him about what lies ahead. Although even that is an unknown because everyone is so different.

    You say you are in the north of the UK and I have heard there is somebody good at Chapel Allerton and/or Leeds. We did live in the UK for a couple of years once a long time ago but long before I knew what ailed me was Sclero.

    Another worthwhile site to explore is International Scleroderma Network -sclero.org.

    Best wishes

  • Hi everyone. Thanks for the info, I feel alot more relaxed now about what is going to happen. my partner is coming with me which I'm happy about. I'm starting to make a list of symptoms to take with me which is looking scarily long. It's also scary how fast the muscles in my arms and legs are going down hill. It worries me that I won't be able to run around with the kids one day. Has anyone else experienced this at a fast rate?

  • My muscles were like that. I thought I would become crippled but the doctor gave me steroids and I forced myself to walk everywhere and there was a big improvement.

    If you have a good rheumatologist he will help you.

  • i also have the pains in my muscles- it came on about four years after my initial diagnosis. I can't lie- it IS frightening and it's also pretty frustrating as I used to love walking everywhere.

    It's the most annoying disease because all you can do is take each day as it comes- and I have no patience whatsoever!

    But I second taking someone with you - and writing a list of questions/ concerns.

  • Well thanks everyone for your advice. I have now seen rheumatology (no diagnosis yet) and am awaiting more tests. I have echocardiogram and lung function test at the end of the month and have been told to have more blood tests next week, to see if my levels have changed. I have a follow up appointment in a couple of months. Anyway, thanks again for your advice.

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