First rheumatology appointment tomorrow

I have my first rheumatology appointment tomorrow after years of complaining about joint pain, fatigue and a list as long as my arm of other symptoms.

I have to say I'm pretty nervous. Nervous mainly that nothing will be diagnosed, I'll leave feeling like I'm still hitting a brick wall .

I have recently separated from my children's father, in part because he has no understanding of how awful I feel. He actually said he thought I was lazy and putting it on so he would pick up the slack! I'm at home all day with a baby and a toddler. I think this is putting more pressure on me getting a diagnosis. I know I shouldn't have to prove myself to anyone.

I've written down all the things I think could be related, going all the way back to my teens. My appointment letter states to allow up to 2 hrs and calls it an interview!

I suppose I'm just on here looking for some reassurance, any advice and to find out what I should expect tomorrow.

Any and all replies appreciated!

X

12 Replies

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  • My Rheumi had a sheet for background yes no answers about my health historically & present in addition to basic height, weight, blood pressure, she did examine me for joint issues and in my case skin due to past rashes. It getting them to say what they think is my challenge, see if you can get their opinion, they may need further tests to make a diagnosis. Try to get key points, I gave her my A4 sheet of history of symptoms, meds & concern's. So she could focus on our discussion it goes quick. Good luck with the appt.

  • Stay calm, try to be clear and leave time to think and listen if you can. Personally I've a tendency to gabble when really nervous but I've learnt the hard way that listening and leaving spaces to show them that I value their input, is pretty important. If you are going on your own then it can be a good thing to leave your mobile on record so you can listen later to what was said. You can ask or not depending on how you feel at the time.

    Best of luck - looking forward to reading how it goes. Hopefully you will get some answers at last. Twitchy x

  • Hello Isitlupus,

    Sounds like you've had a rough time getting to this point. I hope this will be part of a turn for the better.

    Maggielee and Twitchytoes have already made good points. I'd only add that, as you know, it's unlikely that you will get a settled diagnosis tomorrow; all these auto-immune type problems take ages to characterise and they will probably want to order tests and perhaps see how you respond to certain medications before feeling clearer about a diagnosis.

    In describing your symptoms, I would try to be very concrete about how much they affect your everyday functioning - if you can quantify the level of fatigue etc that will help (eg "I can manage to walk to the shops 500 yards away, but no further. A year ago, I could walk 5 miles with no trouble" - that sort of thing). Secondly, the rheumy might focus on things he/she is most interested in - try to make sure you get answers to the questions that bother *you* the most. Twitchytoes' suggestion of recording the consultation is a great idea!

    Hope it goes well

    Mx

  • Hi,

    I hear what you are saying and I understand how important a diagnosis is for you.

    While it is very important to get a diagnosis, in reality it wont help you much unless you get the correct treatment for your symptoms, if you get some help with them you will start to feel better and you will be able to manage the care of you family with less pain.

    Don't worry too much about proving anything to your children's father, he doesn't sound as if he's worth it.

    I wish you the very best of luck 🍀

  • Thanks everyone for your replies... I've come home with a diagnosis of fibromyalgia... no follow up unless x rays of hips and knees show anything. I told him I had a list of symptoms bothering me that I wanted to discuss. He said that my GP had already run tests for RA and lupus which were negative and he seemed to have made up his mind without talking to me in any detail. I had to ask him to look at my list, he quickly skimmed over it and said 'a lot of those things are connected to fibromyalgia. I'll give you a leaflet.'

    I'm annoyed at myself for allowing it to happen and although I do feel I fit the criteria for fibromyalgia I have a tonne of unanswered questions.

    I'm very disappointed and don't really know what to do now!

    He seems to be a very well respected specialist but I'm frustrated nonetheless!

    I went in fully prepared and just didn't feel I could interject or speak up.

  • Sorry to probably not usefully but take photos of joints To prove resistance of . I am in the same boat as you I went without photos and was given Fibromyalgia.and I started off with 2 illnesses glaucoma and Rey nationwide . Had those for 30 years. Now they have added another two. So supposedly 5 in total. I just don,t go to doctor again. No help whatsoever in helping in the way of what to do whatsoever I am supposed to do.

  • I am sorry, Isitlupus, it is very disappointing when this happens. It is not the fact that they don't say, "you have Lupus", nobody wants to hear that. We just want some kind of acknowledgement that we are suffering, some advice, a little understanding and suggestions for carrying on. Not, here's a flyer, goodbye.

    I was lucky that I was diagnosed very quickly by first Rheumi I saw, so I was confident that I was not crazy. We had to move to new city and I tried two different Rheumies in a year and they were both like the one you saw. I told them I had been diagnosed already but needed new doctor. They basically said they do their own diagnosing and I should go home and be glad I was healthy. Thank goodness we moved again (work) and the next one was wonderful. He spent the time with me but also asked me to come back every 3 months so he could understand my symptoms better. After 3 years we had a very good relationship - he would challenge me to ask more difficult questions, as a test for him - but unfortunately with another move I had to leave him behind.

    We have to be stronger and expect, or gently' demand, more from appointments and not be made to feel like we are in the way of their day. They except the appointments, they should really try to be a little more helpful to their patients (customers). I find that as I get older and smarter I am not so easily influenced by someone's job title.

    Sorry for going on, this is just something I get riled about!

    Take care of yourself and keep pictures and notes for next appointment. Dr Donald Thomas says, don't go to appointment with diary of everything that has happened to you (they won't read it), take a list of half a dozen of the most obvious complaints and three questions you want answered.

    Chapter

  • Thank you Chapter. This is exactly it...no one wants to have lupus but after finally getting a referral I hoped a diagnosis would be made on the basis of discussion and a thorough examination of my medical history. At least that way I would have been confident in it.

    I spent a lot of time worrying and preparing for the consultation and he was only interested in the letter my GP had written..basically saying I had joint pain and fatigue. Unfortunately that's not the half of it.

    I really hoped today would put my mind at rest at least but now I feel even worse.

    I'm so annoyed at myself for not being more articulate but I really feel like I just didn't have any opportunity.

  • Your experience mirrors mine. I was so pleased to be seeing a rheumatologist after years of pain and being told I was lazy! I was seen by a registrar who was totally uninterested with my list of symptoms and sent me away with a 'diagnosis' of Fibromyalgia and Hypermobility Syndrome. I had already been diagnosed with this by my GP but felt I needed to see the Rheumatologist to rule out anything else (??). I persisted and was eventually referred to a geneticist who told me I have Ehlers Danlos Syndrome, Classical type and PoTs.

    I'm telling you all this because you must persist if you feel there is more going on than they think. I am considering going to the London Lupus Hospital to find out one way or another whether I have Lupus or any of the related conditions as I feel a lot of my symptoms don't fit in with Fibro or EDS though I am not doubting I have these. GP won't do any more blood tests even though some of my results were raised previously! I need to have my mind put at rest and so do you.

  • Hi Isitlupus,

    I am sorry to hear you were not satisfied with your rheumatologist appointment, have you considered requesting a referral for a second opinion?

    The FMA UK website provides information on fibromyalgia and its symptoms as well as useful links for local support networks, advice and over-lapping conditions which I hope will give you some clarity. fmauk.org/

    Remember to stay positive and to perhaps prepare notes on topics you wish to discuss with another rheumatologist if you are able to get a second opinion. You may find our blogpost on ‘Getting the Most from your Medical Appointments’ helpful: lupusuk.org.uk/getting-the-...

    If you would like some information on lupus and lupus specialist contacts in your area you can email me directly at chanpreet@lupusuk.org.uk

    Wishing you the best of luck, let us know how you get on.

  • Thank you Chanpreet

    I have a GP appointment booked for Tuesday to discuss my diagnosis. I plan to ask for a copy of my recent blood work to see exactly what tests have been done. I asked for an ANA test previously but my GP told me that was part of the RA test, although I didn't think that was the case. I wonder if you might be able to advise me on exactly what blood tests should have been done to definitively rule out Lupus?

    I feel I am in rather an awkward situation now as the info on FM suggests that it can mimic RA and Lupus. It's really not that I disbelieve the specialist but more that the lack of dialogue has left me rather disconcerted and I just want to be confident in my diagnosis

    Thank you x

  • Hi Isitlupus,

    Chanpreet isn't back in the office until Monday, so I'll help with your questions. There are a few different blood tests which are used for lupus. You can read about them in our factsheet here - lupusuk.org.uk/wp-content/u...

    I believe ANA is usually tested for when RA is considered because it can be positive in a number of different autoimmune conditions. They may not have tested for more specific lupus autoantibodies like anti-dsDNA.

    Part of the difficulty of diagnosing conditions like lupus and fibromyalgia is that they share a lot of symptoms with various other conditions and can effectively 'mimic' them. It then important to look for criteria that distinguish them from one another, such as sets of particular symptoms or certain blood test results.

    I hope your appointment on Tuesday goes well. Let us know how you get on.

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