Feeling comforted : This is my first post and I don... - LUPUS UK


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Feeling comforted


This is my first post and I don’t even know if I have SLE but after 20 years of going to Doctors and complaining about pain and fatigue I finally got a new doctor to listen. I explained my life’s medical symptoms, beginning with vitiligo in my twenties to dizziness, pain, fatigue, breathlessness, neck swelling etc in my 50’s. I stamped my feet and demanded he took me seriously and give me a diagnosis (which is completely unlike me as I have always put my faith in the medical professionals and accepted that I am a medical mystery - until now 😠) He said he would do some blood tests, I said I have had every blood test known to man and according to them there is nothing wrong with me. He looked back my records and said, no you haven’t (why not?!) to cut a long story short, I tested positive for Anti double stranded DNA (which meant nothing to me) He said that I might have SLE (which also meant nothing to me) That was 8 months ago and I have now got an appointment to see Rheumatologist in August (hallelujah - it’s only taken 9 months) I am desperate to have this appointment and finally get to the bottom of this, although reading about the treatment I am thinking it’s almost as bad as the disease. Please tell me I am wrong? I am almost tempted to refuse treatment if diagnosed, but I know this is what I have been seek for so long and would feel like I am throwing everything back in the faces of the people who know best. This website gives me reassurance that I am not alone. I already feel better for getting that off my chest.

6 Replies

I very much relate to your story - although in my case I never considered that I might have an underlying condition responsible for stuff like dizziness, dry eyes, poor teeth, IBS etc. It took 9 months from onset of joint pain to get diagnosis of RA. That was 7 years ago.

Now I’m rediagnosed with Sjögren’s, already diagnosed with Hypothyroidism which I knew nothing about - just took the pills for ten years without questioning what for!

What this journey has made me do is want copies of everything relating to my health. And I refuse to be fobbed off these days - often know more about my problems than my doctors. And the ones who don’t acknowledge or respect this are those I avoid.

Regarding the drugs - I’ve been on five of them over a seven year period. I’m very drug intolerant and they aren’t presently offering me more for this reason. The most common one used for Lupus and Sjögren’s is Hydroxichloraquine and most people don’t get side effects and do find it effective for for symptoms. I was just very unlucky with it all with the rest. Please don’t fret about this - the main thing is to get a diagnosis you can trust.

Rhod in reply to Hidden

Thank you twitchytoes for giving me an insight into someone else’s journey on the scary Autoimmune roller coaster - I too will try to be more assertive when dealing with the disinterested doctors at my local surgery (I am certain they think I am just a neurotic female) and will try not to fret, just feel unnerved about what the future holds for me. However I will take it on the chin and be my usual stoic self 😉

Hello Rhod,

I guess no-one knows where their journey is going to take them. And there's not going to be a single right answer that works for everyone. But having as much information as you can at least puts you in a position to make informed decisions and take some control - that's got to be better than trying to live with maximum uncertainty all the time. Please do keep in touch and keep sharing how things are going for you x

Rhod in reply to whisperit

Thank you whisperit for the sound advice. I am very quickly becoming an expert in all things Autoimmune and, as has been stated in other posts, I feel I possibly know as much about this subject as my doctor! I will definitely keep in touch and let all you good people know I get on at Rheumatologist. 🤞x


Hi Rhod,

Welcome to the LUPUS UK Community Forum. I'm really glad to hear that you are (finally) getting some progress towards finding the cause of your symptoms and hopefully some treatment to help alleviate them. As Hidden said, the first treatment that is prescribed to most people with lupus is the antimalarial, hydroxychloroquine. It is the safest treatment for lupus and for many helps them manage their symptoms well with few or no side effects. It does take a while to kick-in (around 3-6 months), so you will have to be patient with it. If, after that time, it isn't controlling your symptoms effectively you can discuss additional treatments with your doctor.

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

Good luck with your rheumatology consultation. Please let us know how you get on. If you need any tips on preparing for it, please take a look at our article here - lupusuk.org.uk/getting-the-...

Hidden in reply to Paul_Howard

Hi Paul

Thank you so much for this, I will definitely download the suggested website articles and will do my utmost to be as prepared and informed as possible for my Rheumatology appointment (30th July) I will let you all know how I get on and let’s hope that the light I am seeing at the end of this very long tunnel doesn’t turn out to be a freight train heading straight for me 🙈 😉

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