Diagnosed and confused 😐

[xSarahx]

Hi I'm 32 years old and have had years of pain and health issues. After beeen diagnosed with fibromyalgia. I was then diagnosed with livedo reticularis and raynauds syndrome. I took second test for lupus and it also come back positive. This was nearly four weeks ago. I had to call my gp to ask if she could see what my results were as I hadn't heard anything. So I called rheumatology yesterday and my doctor wasn't available so this other doctor Explained to me that Yes it come back positive but no more testing needs doing now and to go to my gp. I thought I would need test run on my organs etc. I am banging head of brick wall and the stress is making me more ill. I thought if lupus is untreated it's life threatening? I have a lot well majority of all the symptoms of SLE yet no health professional is explained even what lupus is or what next steps are this surely can't be right?? Can someone help shine some light on this for me please I have a young family and I struggle daily always in pain yet no medication or nothing has been prescribed to me Thank you for taking the time to read thank you

[Penguintaz]

Dear Sarah,

They should not leave you hanging especially if the test has come back positive! They should have you on treatment straight away. I know it is a nuisance but nag your doctor and your rheumatologist until they sort you out. LupusUK is really good and you can phone them up on Monday for more advice! We will be here for support.

[xSarahx in reply to Penguintaz]

Thank you for your response. I will be at my local GP first thing Monday morning. I've not been allowed any pain relief for my fibro or my raynauds as my GP told me it could cause a stroke as they didn't know if I had lupus or not. Yet the other rheumotologist that called me said that's rubbish and I should start some medication. So don't know what I'm to do. I will try call my own rheumatologist Tuesday when he is back at work. I feel sick with frustration. Will keep you updated with how they decide to deal with me on Monday. Don't feel very positive about it. I feel rather annoyed I'm just left hanging with no explanations or treatment plan or anything. Thanks again for your reply. 👍

[Penguintaz in reply to xSarahx]

Hate that the left you hanging >:/ I know it's not exciting but at least you will know what it is going on! Do update us

[Barnclown]

Hello Sarah: you & penguintaz are right. This all sounds sloppy. Your gp & hospital clinic deserve a kick up the proverbial....but 😉 maybe their letters are in the post to you?

these are the protocols my NHS Rheumatology Lupus clinic follows at the outset of the diagnostic & treatment process:

- we undergo FBC + baseline immunologic blood tests done and receive copies of all results

- we are physically examined & our vital signs recorded + urine dip-stick testsed

- we discuss our signs & symptoms (history of occurrence (persistence, recurrence, severity etc)) and look at any photos we bring along

- our medical history is noted, along with relevant immediate family medical history

- usually daily hydroxychlorquine sulphate is the first line treatment...+ any other meds as appropriate

- we get a postal appt notice of our next consultation in clinic, which can be anything up to 6 months away

- meanwhile appt letters come for baseline heart & lung function tests + nerve conduction tests. These appts come in the post during the first few months, and, after each test, we get a report in the post

Otherwise, baseline tests, diagnosis & treatment re the involvement of specific body systems are carried out by relevant NHS clinics, e.g. ENT, Eye clinic etc etc...with care etc supposedly coordinated by our GPs, but they tend to leave this to us because our complexity is more than most gp surgeries can handle

This is about getting to know the characteristics of your personal version of immune dysfunction & connective tissue disorder...this is really the beginning of what's often referred to the diagnosis & treatment process...often the above protocols are a sort of initiation into life under NHS care for Lupus & any overlapping conditions affecting you (fibromyalgia, sjogrens & co). In my case, 6 years passed before a really effective daily therapeutic Treatment Plan was in place and we (my lupus clinic & I) began to feel we'd a fairly clear idea of how my version of immune dysfunction & connective tissue disorder ticks. Having attended this forum for many years, I get the feeling my case is fairly representative

So hang on in there, be your own best health advocate, and take care. If you feel anxious or concerned make your voice heard. The name of this game is communication

Maybe this link can help you: it's to the recently reissued British Society of Rheumatology Care for SLE patients

rheumatology.org.uk/include...

I'm glad you found us...we're right beside you: Courage

Hope you'll let us know how things go

🍀🍀🍀🍀 coco

[xSarahx in reply to Barnclown]

Thank you for your advice and kind words. I'll be at my local gp tomorrow morning and will be asking about the regular tests and check ups. So glad I found this site. I was going mad since I spoke to rheumatologist on Friday morning I don't know anyone around me suffering from any of the same as myself so I feel a bit isolated and frustrated with it all will defo let you know how I get on with my gp and when I call my own rheumatologist on Tuesday. its just really worrying as I have young kids and I feel I need to know what stage I am at I suffer dizzy spells and urinating constantly every five minutes, I'm sick a lot and migraines are bad and the pain is just excruciating throughout my body I used to be so fit and healthy now I do what's expected of me and that's it because my body can't take anymore my mother works in the surgery and she is really concerned as she feels honestly there's damange to my insides already with all my symptoms

my parents and partner are great support for myself My father suffers RA and is my inspiration. I know they diff illnesses but he can relate to the tiredness and constant pain with the joints. It's good to have support but as I say I don't know anyone with same illnesses that can relate to how I feel

This site is already helping me build a confident attitude towards this. I feel I have more strength with the words and advice from yourselves already

Thank you kindly it's truly appreciated you all taking the time to message me thanks again 😄

[Barnclown in reply to xSarahx]

👍👌 Your nearest & dearest + your experience of your father's RA + your mother's work at the GP surgery + your sensible self awareness are helping you greatly! These are BIG pluses...I think you're well placed to "encourage" 😉 the health system to give you the care & attention you need & deserve. And I ❤ your fighting spirit! no matter how ultra poorly we're feeling, essentially, we remain our own "best health advocate"...so I vvvv much admire your determination to be proactive!

🍀😘🍀😘🍀

[xSarahx in reply to Barnclown]

Aww thank you so much for your kind words 😄 I need to keep fighting as no one can do it for me. I want to try live a normal life again. I have landed myself a part time job in the care industry so I feel I need health professionals on bored so I can get medication for my lupus, fibro and raynauds and start feeling more myself again. thnaks again for your words. They really have lifted me today 😄 I hope you are well

[Fennella02 in reply to Barnclown]

That's a really comprehensive answer BC but I must add that I wasn't offered baseline tests for heart/lung/nerve function etc as part of my diagnostic process. It was only after many years when I commented on specific symptoms that these tests were suggested as and when. My dx consisted simply of clinical evaluation, blood tests and X-rays of my hands. Xx

[Barnclown in reply to Fennella02]

🤷‍♀️ That's the thing...these are the protocols my lupus clinic follows: I think the BSR would approve. This is why I do my darndest to post the link to the BSR guidelines: when we know what this professional org recommends, we have a better chance of succeeding in our "negotiations" 😉 with GPs & less than conscientious lupus clinics.

My lupus clinic is working towards official Lupus UK Centre of Excellence status...Paul at LUK head office recently posted the criteria for achieving that status...I thought: YIKES, can't wait for us to get there!

Here's a link to LUKCofE info:

sle.dk/article/lupus-uk-cen...

And another to the forum thread 20 days ago where paul gives the LUKCofE criteria (these blow me away)

healthunlocked.com/lupusuk/...

Baseline tests before treatment commences are key to monitoring our response to our meds and to identifying issues with internal organs. "Simples".

😆🍀😘

[Fennella02 in reply to Barnclown]

I agree totally that awareness of these protocols is important and probably the larger lupus centres do adhere to them but my local rheumatology dept certainly doesn't. I'm not sure if this is caused by basic sloppiness or budgetary concerns. Xx

[Barnclown in reply to Fennella02]

😏 A bit of both....main thing is that you've got the knowledge you have about your health & health system protocols: this gives you a BIG edge 👍🍀😘

[misty14]

Hi Sarah

So sorry to read of your treatment difficulties. It's easy to fall thru the net so your right to phone your Rheumy on Tuesday when he's back. With positive results you need to start on treatment so he should tell you he's sending you a clinic appt for as soon as possible. As barn clown has said , there will be other tests needed as well. Good luck for your GP tomorrow, hope he can shed some light on all this for you. Keep us posted. X

[xSarahx in reply to misty14]

Defenetly will do 👍🏻 Thanks again

[Paul_Howard Partner LUPUS UK]

Hi xSarahx ,

I'm glad to see that you've received some really great responses from members of the community and that you will be going to your GP soon to discuss the results and what your next steps will be. Please let us know how you get on.

If you need more information about lupus, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[xSarahx in reply to Paul_Howard]

I spoke to gp last week and she said it's down to my rheumatologist to get back to me as that's what he stated in letter to herself. Yet I've heard nothing from no one. My test was 4 weeks ago and I had to call my doctors surgery and get them to sign into hosp files to get results and she never even explained what lupus was. Nothing. As I say been left hanging. 😔 No one wants to help orpoint me in right direction apart from the support on this site 👍

[Paul_Howard Partner LUPUS UK in reply to xSarahx]

Hi xSarahx ,

Are you able to phone your rheumatologist or perhaps a specialist nurse on the clinic and see about arranging an appointment to discuss the results? If you are unhappy with the service you have been receiving, it may be worth contacting the hospital's PALS team to see if they can help resolve the issue. You can find them at nhs.uk/Service-Search/Patie...