New to group, I'm currently awaiting my blood res... - LUPUS UK


30,393 members26,968 posts

New to group, I'm currently awaiting my blood results but of all the things I've been tested for this seems to be the most relatable.

Rensee123 profile image
16 Replies

I've been having chronic fatigue for so long I can't even remember when it started or what it is to feel like normal or even close to feeling like myself. I've been to the GP about it before in addition to my hair loss for past year and they say im sure it will grow back or its hard being a mum. I've had one seizure and one episode where it felt like I was going to pass out and not come back around again. I've had tingling in my fingers and sharp shooting pains in my elbows and hand for three years plus, every night its worse when I'm sleeping but I get it in the day time as well. Mouth ulcers swollen eyes and more recently when I went to the GP (different one from before) about my exhaustion she asked me about the rash across my face and said I have butterfly rash. I just thought it was allergies. She's sent my bloods for testing I've previously been for MRI to rule our MS all seems normal except some damage in my T3 &T4 and a cyst on my sinus. I'm finding the exhaustion overwhelming I struggle to stay awake past 8pm sometimes even 6. I've had to leave work to go home to sleep because I can't stay awake not to mention almost falling asleep when driving or when out in public places. Day to day things r just too exhausting to achieve sometimes. No matter how much sleep I get my eyes burn with tiredness i permanently look a wreck. How long does it take to get results back usually and are they always accurate? If it is lupus will it always feel like this?

16 Replies
sabine profile image

Hi sorry you have been having a hard time of it health wise lately. you could have a few signs of early lupus. but lupus is very difficult to initialy diagnose, as it can mimick other conditions and diseases, so bear with your gp. if it does turn out to be lupus once you are on medications symptoms will subside and you can learn to manage the fatigue better. i have suffered for nearly 20 years and its at best its managed, everyone is different how you go about this, but forums like this are a good place to start. all the best. S

Rensee123 profile image
Rensee123 in reply to sabine

Thank you for your reply. I'm relieved to hear there is some help with medication. If it's not lupus I don't even know what's wrong with me! Went to bed 8pm I'm at work struggling at moment I feel like I haven't slept. This is pretty much me everyday. 20yrs is a long time gosh. X

StriatedCaracara profile image

Sorry, to hear your story. It is similar in ways to mine re GP Journey.

Blood tests hopefully have now included Anti-nuclear antibody (ANA) test and ENA screen. (If they don't go back to your GP.)

If they come back positive, then they will know straight away.That is the first hurdle.

Second is being seen by heloful specialist. If local appointment very delayed or unsuccesful some folk decide to go private for diagnosis eg London Lupus Centre.

Hope this helps. Sounds to me as if it could be. Read up more on Lupus UK and Lupus Foundation of America websites to help you as you wait.

There are some good videos if you Google (eg Dr Donald Thomas and Dr Arvind Kaul).

Rensee123 profile image
Rensee123 in reply to StriatedCaracara

They've asked for an ANA test FBC and double stranded DNA test no ENA these are all very new and confusing terms for me 🙈 thank you will take a look the information you provided. U either get one amazing GP or just told you'll be OK everytime 🙈

StriatedCaracara profile image
StriatedCaracara in reply to Rensee123

I have had a terrible flare for the last month after reacting badly to a contrast used in an MRI scan, and then to an antibiotic, and have been going to GP and 111 , then in the end, this week, to A&E.

Agree it can be very, very, very, very hard - particularly at the moment with hardly any face to face.

As I think you say 'Sometimes you speak to someone good and sometimes not so good'.

This week a 111 doctor took my call - he was a brilliant one who spent half an hour looking through different parts of my medical record, as I lay in agony in bed. It ended by him telling me to go to A&E straight away for examination, bloods and possibly a scan.

I could not immediately as I'm a carer and needed to take someone to their GP. I got a bag ready though and planned to go in very early the next day. My symptoms happen in the early hours 1 - 4 am (like now, that is why I'm writing this 3 am) so I needed to get there as close as possible to this time.

Unfortunately buses only start running here at 5am but I headed off . The A&E visit was five and hour hours, but bloods were done early on.

They offered codeine but I turned this down. I learnt from the visit that my lymphocytes are rollercoasting, which is helping me learn patterns that I can use in the future.

It is a hard journey but it is wonderful as steps are made to improve things. One good appointment can works wonders. Other times I end up telling the medics I think they are wrong and explain why. I have joined my surgery's patient group recently because learnt so much over this time.

Rensee123 profile image
Rensee123 in reply to StriatedCaracara

Oh gosh it's exhausting i feel your pain it's hard to get yourself sorted when your caring for others as well

StriatedCaracara profile image

Think ENA may automatically be done if ANA gives strong positive. Anti ds DNA is a main specific antibody test for lupus,

not sure if it part of the ENA screen or done by itself.

I'm still learning🤔

Krazykat26 profile image

Hi Renee 🤗Welcome to the forum!! 💐You're in the right place and you'll find out all about lupus and many other autoimmune conditions's a great place to be when your feeling pants! Your GP has sent u for the right blood tests. As I understand it if the ANA is positive the sample is automatically sent for further testing..the dsDNA which if positive too indicates a diagnosis of Lupus. This takes a little bit longer so try to be patient if you can. The FBC is full blood count to check your general health..check for anaemia n stuff. Lupus UK is a fabulous resource with lots of info on all things Lupie so check out the website n you can even become a member of you's £10 per year n we get quarterly magazines.

Once your blood tests are back you'll be contacted by your GP n if they're positive you'll probably be referred to a rheumatologist. Waiting times are extremely lengthy at the moment so some people are going private to get seen quicker.

Getting a diagnosis and then getting onto the right treatment is a very lengthy process and unfortunately there's no magic wand that will make it all like it was is life changing but with groups like this one we can learn to adapt.

One thing I'll say at this stage is that more u try n fight fatigue the worse it gets..trying to push through is damaging in the long term. You're clearly unwell and your body is trying to rest..the best thing you can do right now is listen to it and rest whenever you can. Do u have support within your family? You're a mum so I'm guessing your busy most of the time..and you're working too?! It sounds like you've got a lot in your plate and you may be overdoing it. Is there anyone who can help take some of the work off your shoulders? You don't have to answer these questions..I'm pretty whacked myself today but I'm just giving u some ideas on trying to manage fatigue.

Hope some of this helps. Ask questions here and we will get you through the're not alone!! 🤗💜🌈😽😽Xx

Rensee123 profile image
Rensee123 in reply to Krazykat26

I keep having to put myself to bed like a bay by about 7pm I'm not managing at work at all. No help with the kids I'm afraid and my son is autistic so it's very challenging. Thank u for your reply. I was in so much pain last night all my hands wrists and shoulders hurt all night long plus the numbness.

StriatedCaracara profile image
StriatedCaracara in reply to Rensee123

Whilst I was waiting I was having awful issues with joints particularly at night. Each week I produced a 24/7 colouring in chart so I could monitor sleep and what was happening.

The picture I have attached can be enlarged using the magnifying glass icon.

I included upward pointing red arrow heads for times of stress and downward pointing green arrow heads for times when I relaxed.

Alongside the bars I would record symptoms, like joint pain and where it was. These sheets I keep in a ring binder. I now have been producing them for a year and a half. I got the squared paper from a supermarket.

As I had also become photosensitive, I also put a sun symbol against times I had to go out and it was sunny. I had to start using sun screen even in winter and bought more hoodies and wore them with a sunhat or baseball cap under the hood to protect my face as much as possible.

I changed my diet to include more anti-inflammatory foods - oily fish all from tins and nuts like walnuts that I snacked on.

I got 2 litre bottles filled them with water and added a 300mg dispersible aspirin and used this as my drinking water over the night, keeping in the fridge over the day. I had to make sure my stomach gave me no trouble as I did not want an ulcer. In the end I had to also take omeprazole.

I added any medication I took to the chart.

Then one wonderful day I was eventually diagnosed. I was prescribed hydroxychloroquine. After about 6 months most of my symptoms completely disappeared and my weekly charts all looked very different.

Example of a 24 / 7 weekly colouring in log
MusicalFurbaby profile image

Hi Rensee123, welcome to the forum. This is a good place to ask questions and compare notes, even if you don’t have a diagnosis yet. Lupus and other AIs can take a very long time to diagnose (mine took 8 years) so we need support while things are in progress. Hopefully the wait is not too long for you.

Bloodwork does not take long to come back, typically a few days, but the problem with lupus bloodwork is they like to repeat the testing over a period of months or years. This is because some tests, like the ANA, can give false positives, so they don’t tend to diagnose on the basis of one positive test. But if you test positive repeatedly, over say a 6-12 month period, they are far more likely to diagnose you. The wheels of diagnosis turn very slowly indeed!

Your question about always feeling this bad is a tough one to answer. Most of us live with what is called ‘flares’, periods when symptoms worsen, followed by periods of symptoms settling or disappearing. If you are in the middle of a flare right now (which it sounds like you might be), then the flare will probably back off at some point, but it might last for days, weeks or months. My flares usually last a few days, but I recently had a 6-month flare—it was horrible, but it did resolve itself in the end.

In between flares, most of us have persisting symptoms such as pain, fatigue, brain fog etc. It will take a while for you to work out your persistent symptoms vs your flaring ones. And even then, AI disease is good at throwing us curve balls that catch us completely by surprise!

Hang in there. We understand what this process is like, and we understand the fatigue too. Look after yourself, and try to rest when you can. Your body needs it. 🌻✨

Rensee123 profile image
Rensee123 in reply to MusicalFurbaby

I wish getting rest was that easy! I feel like the pins and needles and joint pain are there daily. The fatigue seems to be constant currently for months the skin flare is a new one for me. Well on the face anyway. Oh gosh it sounds like a long road ahead! I've been going to the GP about these symptoms for almost 3yrs.

MusicalFurbaby profile image
MusicalFurbaby in reply to Rensee123

Oh dear, I feel your pain! I get tingling and numbing during the night and have terrible joint pain during the day. And you’re right, the fatigue is constant. Hang in there—if you’ve been going to the GP for 3 years, that means you’ve already covered some ground. You’ve ruled out some things, like MS. (Always good news.) Let us know how you get on, crossing fingers and toes for ya.

Poshcards profile image

hi, I have had Lupus for over 30 years and its been a long haul, as said meds can help, but I find the fatigue never goes away, you have to learn to pace yourself and manage it sadly. But it may not be Lupus xx

Rensee123 profile image
Rensee123 in reply to Poshcards

I think the fatigue is the worst bit! 🫂

KnitSewPurl profile image

are there any close friends that can help you care for your children / child from time to time to take off the stress of you. Just to allow you to sleep . Fatigue you have you need good amount of sleep . in my early stages of SLE (lupus) I used to sleep for at least 16 hours a day straight and lost loads of weight , hair loss is still constant, pain could hardly walk or lift anything heavy not even a bag small of potatoes. I have had SLE for now over 12 years but severe migraines longer which we felt were connected to my SLE. Because everytime I have a migraine it triggers a flare and a spot lesion appears after that , there is also night sweats. If you can resolve that one hurdle getting additional sleep it will help a lot. pain killers will help anti inflammatory will relieve the inflammation of your joints and muscles. whilst waiting for your results. If it is SLE /lupus , fatigue does not go away, completely and you really need to space your day . I used to find any form of stress would increase the flare up and pain.

As for me , I ended up taking out early retirement under ill heath felt that every morning is such a struggle with the joints and muscles plus with all the additional baggage of other ailments that ones along.

Hopefully blood results is not SLE . but do get some help with child care and lots of sleep as you really need it listen to your body dont fight it .

Thinking of you x

You may also like...