Being tested for Lupus help

[Selwin2000]

Hi everybody I’m extremely new to this sight and truthfully I hadn’t ever heard of Lupus before I don’t really still fully understand it if I’m honest so any help would be so greatfully received.

I’m 45 married two children which I adore, I had my Thyroid gland removed when I was 30 due to having multinodular thyroid disease it was safer to remove the whole lot as the tumour was quite big.

Jumping in 15yr my immune system seems non existent I get everything going - but my main frustration is I am literally exhausted all of the time sometimes due to the pain in my knees and hands now the top of my neck too my hands have swollen so bad the pain keeps me awake my GP can only give me co codamol and amitriptaline for pain relief at the moment until I’m fully diagnosed.

My GP advised me that because I already have an autoimmune disease (Thyroid) it puts me at a greater risk of getting another and her thoughts are gearing towards Lupus (I prefer the truth and she respects that)

I also have coronary artery spasm which is similar to Angina but comes on at rest rather than exercise.

So my question is what is Lupus? What were your symptoms? What is the treatment?

Thank you so so much in advance x

[whisperit]

Hello Selwin2000

If you go to the LupusUK "home" page at the top of the page here, you will see that there is a range of leaflets you can download. They cover various aspects of lupus and related conditions.

Here's a general introduction

lupusuk.org.uk/wp-content/u...

And here's the one on symptoms and diagnosis lupusuk.org.uk/wp-content/u...

Lupus is only one of a whole range of rather complex and hard-to-diagnose disorders, so you may find that it takes a long time before it is clear what the most appropriate diagnosis is for you. Many people on the forum have had lengthy journeys to reach this point, and many are still on that journey. But you are very welcome anyway! Do let us know how you get on, and if you have any questions. x

[Selwin2000 in reply to whisperit]

Bless you thank you for your super speedy response that is so very kind of you x

[whisperit in reply to Selwin2000]

You're welcome

[chrisj]

Hi Selwin. I'd never heard of Lupus either and when the doctor told me the results of blood tests done in 2005 were SLE, I asked "whats that?" I hadnt a clue. She gave me a very helpful leaflet that was in the hospital dep where I saw her for results and I read it when I got home. It listed most of the problems I'd been struggling with and things fell into place. Seems my immune system was in overdrive. I was tired all the time, almost sleeping round the clock at one bit, breathless, aches and pains in my arms and legs, had no energy at all. Everything had become an effort. Awful sweats in the night to the point where I was getting up and taking cool showers at 2am, hair falling out...those are the things I remember the most

I'd been unwell for a long time. Eventually the hospital bloods were done after a misdiagnosis by gps. I'm taking hydroxy, brand name plaquenil, finally on the right meds and feel such a lot better. Still get tired but I dont fall asleep every time I sit down and have more energy. I had problems staying awake at school in my early teens, I'm almost 72 now. I've also been diagnosed with asthma, sjogrens and raynauds although since taking hydroxy the raynauds is nowhere near as bad as it was. I just have to make sure I'm wearing gloves and socks when I go out in winter. I have osteoarthritis as well and when my joints are more painful than usual I'm convinced some of it must be down to Lupus but the doctor says not....I'm told my SLE is mild, that was a comfort. Lots of reading about it on the net if you search and maybe your doctor could supply some as well. My gp knew next to nothing about the illness when I asked her, no comment on that, just an eye roll xxx

[Selwin2000 in reply to chrisj]

Hi Chris

Thank you so much for taking the time to reply to me.

I’m so sorry to hear you have suffered for so long bless you. But it’s good to hear that the meds are helping with the tiredness which is awesome as I feel for you there I’m constantly tired too and night sweats are terrible like you havingbto get up in the night to change my bed and pj’s even during the day everybody else is in jumpers and I can be sat there with a vest top on pouring with sweat so embarrassing- my gp checked my hormone levels and I’m not going through the change (I’m 45) the top of my spine is worst at the moment my hands are terribly swollen and my knees so I’m not sleeping due to that too - it’s just awful and my gp can’t prescribe stronger analgesia until Ive a firm diagnosis 🙄.

Like you too if I’m out in the cold my hands go red and blotchy like bubbles (looks like an allergic reaction) that’s happened for years but I’d never associated it with anything us women just kind of put up with things don’t we. But iveva pretty good gp and she advuyme that’s part of it too so my puzzle is slowly slotting into place.

Again Thank you so much x

[Paul_Howard Partner LUPUS UK]

Hi Selwin2000 ,

Welcome to the LUPUS UK Community Forum. I'm really glad to see that you've had some supportive and helpful responses from other members already.

We have a wide range of publications that are free to read and download on our website at lupusuk.org.uk/publications/. If you would like a more condensed information pack to learn about lupus and LUPUS UK, we have one that you can request or download from our website at lupusuk.org.uk/request-info...

If you would like to learn more about what is involved in the diagnosis of lupus and get some advice, I would also recommend taking a look at our article here - lupusuk.org.uk/getting-diag...

If you need anything else, please let me know and I will do my best to be of assistance.

[Selwin2000 in reply to Paul_Howard]

Thank you very much for your message Paul.

I will take a look at the information that you have provided me with.

Best Wishes

[Krazykat26]

Hi Selwin

U have made the first positive step..u will definitely find help and advise on this forum..lots of lupus warriors here!! I had never heard of it until I was diagnosed with cutaneous lupus..what's lupus was my first question..and I find that loads of people have it!!! There are lots of questions that drs don't know the answer to but u can guarantee that someone on here will have experienced the same or similar symptoms..we all share and support each other when we can. So big warm welcome to u fellow warrior x

[Selwin2000]

Thank you KrazyKat it’s so nice to have people to talk to.

My first blood tests have come back today Vitamin D low & Folate levels low (didn’t ask ranges as it was the receptionist that phoned me advising me that the GP wants to discuss this with me.

It’s 00:38and I’m still wide awake - another night sweat, the back of my neck is sooo painful I can’t roll over as my knees are in agonie and my fingers are burning with pain. Taken all my painkillers but nothing works. Is low folate & Vit D difficiancey a sign of lupus?

Thank you for your help 🙏x

[Krazykat26 in reply to Selwin2000]

When I was first diagnosed I was told to take vitamin d because I'm light sensitive..and I think that most of us probably take it. I'm not aware that I've been tested for vitamin d deficiency but I'm now prescribed a large dose with calcium because I've been on steroids most of this year and I haven't been outside for most of the year. Your doctor will be able to advise u what is the best course of action. Maybe talk to your GP about some stronger pain relief..pain is always more intense in the night time I think! Take care xx

[Selwin2000 in reply to Krazykat26]

Thank you so much for taking the time to reply to me I sincerely appreciate it. xx