Confused and looking for advice

Good morning! I am new on here and finding it a wonderful resource. Just been referred to rheumy for first time and looking for advice and tips to help my appointment be a positive one. I have taken photos of photosensitive rash on legs to take with me as well as rash on face which comes and goes.

As well as a few mouth ulcers I also had some in a rather delicate/intimate place which I found painful and upsetting. Should I mention those at my appointment.

I am feeling a bit overwhelmed as all symptoms have arrived in one big flare up. I think I've spent years feeling like a big nuisance to the gp with sore this and that, tiredness, etc etc etc. At least I feel I am now getting some answers. New gp listened, did bloods which show low vit d, ferritin and raised inflammatory markers etc

I do feel very tearful nearly all the time. So many questions in my head....allergies? Joints in feet so sore can hardly walk. Weight gain, stiffness, sore wrists so can't drive as too painful to change gear and use clutch. Loss of libido? Terrible paIn in coccyx?

Please, lovely people, any comment or advice would be so useful.

Big thanks in advance

23 Replies

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  • Hi Saintsmad, my advice is to write everything down. All your symptoms, especially any on the diagnostic criteria, so you won't forget. Also write down any questions you have. Don't forget being tearful which is also a symptom.

    As Lupus is not a common condition the Rhemy may have little experience so you might like to ask how many Lupus patients they have. I do this with all Drs now, most say they have no or little experience. It levels the playing field.

    Also you might find this consultation unusual in that you will have to do all the work. Quite often the Rhemy will be looking for evidence to point away from Lupus. I can only think this is because they think it is rare & they have been told to expect to see few cases.

    Hope thishelps.

    Sarah x

  • I entirely concur with Sarah - go armed with lists. In my experience, unless your Rheumatologist actually did some training in a Lupus clinic, they will be as unfamiliar with the disease as GPs seem to be. Even worse, GPs seem unwilling to familiarise themselves with it and habitually respond to complaints with "well, what does your Rheumatologist think?" Educating yourself re. SLE is also key as making informed decisions about your treatment/managing your condition will be crucial to your sense of well-being. You might also consider taking an Expert Patient's Course if your local health authority runs one. Hugs and good luck!

  • Thank you Tigerlily. Lists are building nicely! I have done loads of reading around and thought I might even print off some info to take with me. Or is that too patronising? Thanks for the hugs xx

  • You're welcome :))) My Rheumatologist (and most other consultants I've had to see) has always been OK with lists plus other stuff I print out - mostly about alternative treatment or drugs I've not yet tried - but commenting on yours would be pure speculation. Depends whether he's what I refer to as an "old school demi-god" - IME, those approaching retirement don't like to be challenged. Most younger consultants seem relieved you're on the ball and want to learn how to manage your condition. Do let us know how you get on x

  • Hi saintsmad

    I wouldn't take in printed off info....been mulling over whether to say this, you are instinctively correct..

    😷😷 don't like it

    ( insider knowledge 😁 )

    hugs

    PM

    🌿

  • In my experience...πŸ€”

    πŸ’­πŸ’­πŸ’­πŸ’­πŸ’­πŸ’­πŸ’­πŸ’­

    PM

    πŸ˜›

  • Thank you so much Sarah. It does indeed help xx

  • Hi Saintsmad,

    I would definitely mention all the ulcers. Have you ever had a look at Behcets syndrome? It can present in a Lupus type way, causes lot of ulcers and rashes as well. I will find a link.

  • Thanks. There is such a lot to look at and absorb!

  • I would keep your expectations quite realistic and your mind as open as possible where getting a Lupus diagnosis is concerned - because there are a whole host of other connective tissue diseases that could account for symptoms and signs. It's great to write things down but I now try and put my symptoms down in bullet points on one sheet of paper and hand it it to them at the end.

    Of course you're a bit weepy and low - pain and uncertainty are very difficult to cope with as is systemic inflammation. I found it much easier to bear once I was diagnosed with and treated for RA - but I am in limbo again just now with possible misdiagnosis.

    Best of luck - let us know how it goes.

  • I agree with Keyes, sounds very much as Behcets. And yes tell everything.

    If this rheumy is not listening, he/she never will, change your rheumy.

    Good luck.

  • Thanks Patricia. Looks like I will good luck!

  • You've got wonderful replies, saintsmad! πŸ‘πŸ‘πŸ‘πŸ‘πŸ‘

    Nothing I can add, except maybe to suggest you read this recent forum discussion...both the comments & the links to appt prep check lists may be helpful:

    healthunlocked.com/lupusuk/...

    Also: I have been managing intimate area early onset dryness with lesions etc + a gyn-dermatology autoimmune condition for many years...am now 62. All my probs down there are responding v well to both my lupus meds & the Gyn treatment plans I've been prescribed. It is important to mention all this...I tell myself that my medics have proven they really do need & want to know about probs with ALL my holes: ears, eyes, nose, mouth, + the 3 in my undercarriage etc etc πŸ˜‰πŸ€—

    Hope you'll let us know how you get on

    πŸ€πŸ€πŸ€πŸ€ coco

  • Hi

    I agree with Barnclown you have some good advice here.

    As far as your doctor's visit, yes take your photos with you. I/we ( my wife and I) have created a file/folder, she takes any and all photos of my Lupus rashes/blisters. Even the rashes/blisters in the intimate areas as well. (I get the rashes/blisters in intimate areas also).

    I have had a rash on my right foot that will not go away. I have been barefoot for 2 years (thus Barnclown has give the name "The Barefoot Gardener"). I am a guy so Having to go barefoot in public, and everywhere I go and everything I do, I have to be barefoot, it took a little getting use to, but now I think nothing of it.

    If you would like to, you can go to my home page and see some photos of the rashes I have had, and or currently have.

    I live in the southeastern U.S. In the state of Alabama, I am in a lupus study, and they take photos as well. If I can help someone down the line it is worth it.

    Hope you get better, and find your answers soon

    Tiras

    "The Barefoot Gardener"

  • Thank you do much for your positive advice. Its very welcome x

  • Hi Saintsmad, it looks like you've received some great advice from the community.

    We have a booklet called, 'A Short Guide to Lupus and Visiting Your Doctor' which you may find helpful to read before your appointment. You can download or view it on our website at lupusuk.org.uk/wp-content/u...

    If you would like more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website here - lupusuk.org.uk/request-info...

  • Hi Saintsmad, are you a fellow Southampton supporter?

    Agree with everyone who answered your post.

    I recently saw my Rheumatoligist and took a picture of pain points. It was just a body outline I got from the Internet and printed it off and with a red marker pen wrote on the body all my pain points, along with a list of questions and issues it made the appointment go much more smoothly.

    Worth thinking about doing.

    Best of luck with everything and you have some very experienced fellow sufferers on this site, they have been a great help to me since I joined.

    Take care,

    Love Nicola X COYR

  • Ooh thats a great idea. I shall do that myself. No..not Southampton....St Helens Rugby League!! 😊

  • Well at least it's a decent rugby club, GO St Helens.

    Try that body picture, it did help him almost immediately seeing pain points he said you also have Fibromyalgia, in a way it was a kick in the teeth, just add one more to the list. But at least he didn't have to ask as many questions and the examination was a lot easier.

    They say it takes around 7 years to diagnose this disease but if you look at others on the fourm you will see it's taken years for them to get a diagnoses and some are still waiting and wondering. New day seems to bring new issues but hey ho, that's life but not as we would like it.

    Take care,

    Love Nicola X ⚽️😎

  • Just a suggestion...I am keeping a diary of everything on a daily level for my next appointment just so the doctor can see exactly how much is happening. I think it might be very helpful so I don't have to try and remember everything and also that it's not a list so the doctor can see that I don't have everything I describe all the time but that I have 'something' every day. I will be taking a list as well.

    Just thought this might be of help to you as well.

  • Sounds a great idea. I am so grateful for all the suggestions from everyone x

  • Hi Saintsmad. Knew immediately who you meant! I have private messaged you

    X

    ⚽️

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