First Appointment with Rheumy

Good afternoon my dear friends,

I have been quiet for a couple of weeks as I've been a bit preoccupied on top of feeling like I've been done over with a Base ball bat. My darling mom-in-law had a bad fall and has broken a bone in her neck. Sounds worse than it could have been - apparently very common in the elderly if they fall but it it has really shook her up. We've been doing the 2oo mile round trip everyday (lousy M6) and I'm exhausted. I pretend to be fine and keep on going but today I've hit the wall. I look like uncle Fester. On a good note, I have my first appointment with the rheumatologist on Thursday morning and this where I need your help and advice my friends. (I have had to go private because on NHS, I had to wait to be put on the list and then it's approx 19 weeks) I don't know where to start. I'm afraid of getting a diagnosis and more afraid of not getting one! I know this is only the beginning but I've been down so many blind alleys - CFS, depression, hypercondriac...what do I say? Should I take a list or does that look a bit odd? Honest to god, I have a head like a sieve. Thank God B can come with me, I can clam up when I'm stressed.

I do read all of your posts when travelling - thank you for keeping me strong enough to keep going 😘 Attempting to cook a roast, so far: put oven on 😁 at this rate we'll be eating at midnight πŸ˜†πŸ˜†πŸ˜†

If you're reading this twitchy - glad the dinner party went well and lmao at expanding belt!!

Thank you all - you have no idea how much you mean to me.

C xxx

36 Replies

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  • Sorry Charliebear I really can't help you as I'm absolutely rubbish when it comes to GP and Rhumy appointments, but its a good question and I look forward to reading the replies. As it's a private consultation, I really hope the consultant is very thorough and listens carefully to your concerns and treats you with respect. Xxx

  • Hi Flossy - thank you for reply. I'm relieved it isn't just me 😘😘😘 I'm sure I'll get some sound advice - this forum keeps with going.

    I wish you a pain free night chick 😘😘😘

    C xx

  • How are you doing that round trip? Oh my goodness. That alone would wear me out. But I guess another everyday life situation that you just have to get on with, somehow. As for Rheumy appt. I love a list! I would say for first appointment list your symptoms. With my lupus brain fog I can even forget that simple list. So symptoms. When did this start? Anything specific kick this off? (For me birth of 3rd child). Any relevant family history? RA or lupus? Any specific questions you have about potential diagnosis? I have been known to take a list and forget to check it when in there, then come out, look at it and think oh no! I forgot....... So take two copies and hand one to the Rheumy. That way he has an accurate note of your current symptoms etc and it doesn't matter if you don't cover it all, because s/ he can read it afterwards. I think Lupus UK do an information leaflet on first appts / appointments in general. Have a look at their website. And as for should you be honest. I always am. I think you need to be. They need a full picture. It might be relevant, it might not but let them decide. It's not always easy to say you've been down or teary for example but they need to know. Let me know if you think of anything else. Where are you going for your appt, out of interest? Best wishes, Wendy

  • Aw bless you Wendy. This is fab πŸ‘

    Im on my knees tbh...B does all the driving and I think I'm feeling a bit guilty too - why do we do it to ourselves? I wouldn't trust myself driving to the end of the drive at the minute πŸ˜‘

    I'm off to Cheshire Spire so if anyone has been there...

    You take care and thank you 😘😘

    C xx

  • I have a first appt with a new Rheumy on 21st April, at the private London Bridge Lupus Centre. I'm at the end of my tether with local care, or rather the lack of it. So I'm trying to condense 3.5 years since diagnosis and 5 years pre diagnosis into a short, coherent form!!! It's impossible! So I know how stressful preparing for such appointments can be. I wish you well. (PS I had a hip operation in the Spire Cambridge Lea in 2013 and was so well looked after, my operation and recovery were faultless. I hope they give you such a great service).

  • Good luck to you too Wendy. I hope that apt goes well too.

  • Hi. I also paid to see a private Consultant as the waiting list was so long. It turns out to the same one that I see in the NHS! I went with a timeline going back 5years as that is when my symptoms started. Looking back now the appointments and blood tests with the Doctor all helped the Consultant to diagnose me right on the spot and start me on meds. Also write a list of symptoms even if they sound trivial because it helps them to piece it all together! Good Luck and let us know how it goes.

  • Thank you - I really think my symptoms became worse after I had my tonsils out - 10 years ago...I'll have to get my thinking cap on! Can't really remember what I did this morning...😁

    Bless you!

    C xx

  • Yes, lists are good! These appointments are so precious that it is worth putting some time into planning how best to use the time.

    As a health professional, I used to like it when my clients started off with a (short!) list of the questions they most wanted answered in the appointment. And the more specific they could be, the better. An ideal list might be something like,

    "Number 1 - My biggest problem is that I am getting severe headaches every day. I want to know what might be causing them and what I can do about it"

    "Number 2 - I have been given lots of different diagnoses in the last 2 years, and I am really confused. I'd like you to clarify what all this means"

    "Number 3 - I am worried that I might have an undiagnosed auto-immune disorder. I'd like your opinion"

    That helped me to make sure that I was addressing the things that were most worrying for the person, and avoid burning up the time with a long, rambling history (me *and* them!)

    (just to avoid confusion, I wasn't a rheumatologist - I'd have been really worried if people were asking me about autoimmune disorders in real life!!!)

    Good luck anyway x

  • This really helps sooo much 😘 I honestly don't know what I'd do without this support and advice.

    Thank you

    Charliebear xx

  • For my rheumatologist I wrote a brief history of the immediate problems that were making me feel ill and that I associated as being related, with a time scale, dates, duration of symptoms and any associated triggers.

    I avoided vague comments like 'I ache a lot' but used specifics like 'the muscles in my forearms feel weak and burn with pain as I go through the day'. The better you can describe symptoms and avoid generalisations the better. I wrote down just a few specific questions, not a great long list!

    On the other side i wrote a time line of all my significant health issues, ops, hospitalisations or diagnoses since childhood, so that if there were things that the consultant didn't have access to in my current hospital notes that might be relevant, they could mull it over later. I left them with this, so that they could go through it again before any follow-up.

    I was told that had been helpful, and I felt I had been heard and had had the opportunity to really express how my symptoms were affecting me.

    Hope this helps and good luck.

    I do hope your mum-in-law recovers well and that you get some rest soon.

  • Hi Rowan,

    This is very helpful - thank you.

    C xx

    Sorry for short reply but I am shattered 😴😴😴😴

  • That's ok. You rest. Just relaying what I did , rather than offering advice. Look after yourself too. Sleep well. 😴x

  • You did good getting the oven on - how'd the rest go? Lord knows I've gone to put stuff in lately, suddenly realizing I'd forgotten to turn it on first. The off has been no dramas for me, but the on has been a bit of a thing...πŸ˜’

    The other day had an old friend drop around. Boiled the kettle, put the coffee and sugar in the cup, waited until the kettle had boiled, then picked up the cups and went to the fridge, got the milk out, went to pour the milk in... And realized our coffee had no water in it. The cups were about 6 inches away from the kettle.

    Luckily my friend didn't give me too much greif....

  • Great advise, I went private too, juggling it with NHS... Just wanted to add list of any medications and ask secretary to doc or nurse if you should email background info before your appt. and if you have any recent tests provide those or bring a spare copy... Sorry to hear about your mother-in-law hope she is not in to much pain, broken bones are not good at any age...hope you get some rest...ml

  • Great question, Charliebear. I'm seeing a new consultant early next month and was thinking of posting a similar question on how best to present a coherent history. I know, that sounds bizarre, coming from (yet another) medical professional, retired now, thankfully but I have only recently begun to notice the effects of the lupus brain fog I had heard about. It has great up on me. Getting to where I am currently on this auto-immune spectrum has been a roundabout and haphazard journey and I'd like to make the most of the appointment. The replies you've received so far have been helpful to me, too. Thanks, everyone.

    I hope your MIL makes an uneventful recovery. The round trip to visit her sounds exhausting.

    BTW, when you say you look like Uncle Fester, is that with or without the bread sticks up his nose?

    Tess

  • Good luck to you too Tess. I hope your consultant is thorough and compassionate. Take care. R

  • Thanks, Rowan.

    I'm going to the RNHRD in Bath (known locally as "The Min"), my nearest centre of excellence for lupus. I've heard some good reports on the care offered there.

    Tess

  • Wow, I really hope they get to the bottom of things and come up with some suggestions for moving you towards being more well again.

    Keep us posted. X

  • I wanted a referral there, from Pembrokeshire, as it's my nearest Lupus Centre of Excellence but I was refused. Please let us know how you get on, I'd be very interested to know. Good luck.

  • Hi, Wendy. A friend of mine eventually managed to get her adult son, who has ankylosing spondylosis, seen there, from mid Cornwall but it was a long and difficult battle.

    Your replies to Rowan, about two copies of The List etc, are really helpful. I wish you luck for your London Bridge appointment and will let you know how I get on at the Min. So called, as you may know, because it is a very old establishment, when the warm, heavily mineralised waters of Bath were the only treatments for musculoskeletal disorders. The Min's history is fascinating but I'm not clever enough to copy and paste the link, using my mobile, sorry.

    Tess

  • Apart the medical side of things, I grew up in Bristol so have loved Bath from a young age, then my husband was at uni there and we go back whenever we get a chance. What a city.

  • Blooming typos! Or more likely, predictive texting. I meant the brain fog has crept up on me!

  • Hi charliebear

    Just want to say sorry your having a tough time with mum in law's fall!. Sorry about all the travelling and hope she's better soon. You've had some great replies re Rheumy appt that I can't add to but just want to wish you lots of luck for Thursday!. Hope you get good info and help from it!. Hope you don't have to travel far for it!. Let us know how you get on. Fingers crossed. X

  • Hi Misty,

    There have been some amazing replies! The responses and good wishes are keeping me going! I'm so emotional at the minute i could cry at the drop of a hat. Think it's because I'm soooo tired..

    Thank you for your lovely message - cue tears!! 😘

    Charlie xx

  • You just take care charliebear and do the best you can tomorrow!. Just think it's something for you and fingers crossed you get a good outcome. X

  • 😘

  • You know that depression & anxiety are all part of lupus too? I hadn't connected the two. But I am a strong, fiercely independent person and if I'm tearful and down, it's now a big sign for me that my lupus is flaring. Unfortunately the doctors I see tend to think I'm just a hysterical, blubbering, mad woman and don't seem to recognise this as a sign I'm not well. 😬 It's a lot to take on board when you are diagnosed. Be kind to yourself. And don't feel guilty for taking a step back and dealing with it all in whatever way you need to. X

  • Hi Wendy,

    I'm all over the place today. One minute I'm ok and the next...

    Thanks chick - I do think sometimes a good cry is ok, a release valve of sorts. Depression is a sneaky sod and catches you off guard but GP's seems to focus on that rather than it being a symptom of something else. I'm glad it's not just me who can become a blubbering mad woman πŸ˜†

    C 😘😘 xx

  • I was a mess when diagnosed. I'd also lost 2 family members 6 months apart in 2013, then my dad passed away just 8 weeks after his cancer diagnosis. So 3 lost in 12 months. I was a mess. I worked in a school and I could not hide my emotions. I would find myself crying and not be able to pull it together. It was terrible. School couldn't have me crying in front of the children, obviously not right for them to see. Eventually got signed off for 3 weeks to get on top of it all. I can totally sympathise. I'd never suffered depression before lupus. Plus with headaches and brain fog, lack of concentration etc, you feel like a zombie and I worried about not being myself again. Like I said, our lupus journeys are all different. It's a roller coaster ride of emotions and symptoms. But you will find your way. Be kind to yourself. Be patient with yourself. And use this site, use us for experience and info and a shoulder to lean on. This forum has been my life line. X

  • Bless your heart - I honestly don't know what I'd do without this forum.

    You have been through it, to lose family on top of being diagnosed. You are one strong lady 😘

    Thank you for being my shoulder today - I'm here if you ever need one in return.

    Charlie xx

  • So sorry you're having a tough time of it Charliebear, it pushes us to our very limits and beyond at times like this doesn't it 😞.

    You have some great advice on here, I took wendy39's advice before my second opinion appointment in December, previously I would take scraps of paper with odd questions scrawled and then would sit there with it in my hand and forget to look at it! So I took the time to type it all out, I won't lie it took me a while!! I sectioned it off with symptoms, past history, family history, medications and ongoing treatments with whatever specialism I was under etc and bullet points to make it easier for them to see, I update it now as time goes by and hand a copy to whatever specialist I see, then a separate one pertinent to that specialisms ie Neurology then I would set out all my neuro symptoms and hand a copy of this to him too, and when I go in I just say to them ' I hope you don't mind but I've done this for you because I don't want to miss anything out, I also have some questions I'd like to ask you too' my rheumy was really grateful, he even said if I had any new symptoms or any changes could I write them down on the list. Mine did read through it while I was there and asked questions as he did but others may not, but at least they have it to refer to later if they need to.

    Then I'd have a separate sheet for my all questions.

    It did take me a while to do and I kept going back to add things to it as I thought of them or experienced them, but it was well worth it, there was no way I would remember everything with my brain fog!😫

    I know you're short of time and energy so just do what you're able to in preparation for your appt, it'll all help and if you have a good dr they should be pleased you've done it as they should view it as a good tool to help them.

    Hope this helps a little and hope things settle down with your MIL soon.

    All the very best for your appointment, hope you get some answers, keep us posted.

    Take care

    Diane🌺Xx

  • Bless you Diane,

    I am feeling a bit overwhelmed and as silly as it sounds, I'm really finding it hard to string a sentence together! I am going to start my prep for appt this afternoon - brain fog permitting 😐

    It sounds like you've been through the mill too. It's amazing how we keep going. It's very true that man cannot make anything as strong as the human spirit.

    Thank you for your lovely message.

    Charlie xx

  • It's not silly at all Charlie and when you're exhausted everything is even more overwhelming and being/ feeling that way is all part of it....😞

    and you're so right about the human spirit!

    Stay strong and just do what you can.

    Big hugs and all the best🌈 🌺Xx

  • Hi Charliebear68,

    Good luck with your rheumatology appointment on Thursday. For advice on preparing for it, you may want to read our blog article here - lupusuk.org.uk/getting-the-...

    Let us know how you get on.

  • Thanks Paul - will do

    C

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