New to lupus: I have been diagnosed with lupus... - LUPUS UK

LUPUS UK

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New to lupus

Lottie12345
Lottie12345

I have been diagnosed with lupus Positive ANA double stranded DNA. Reading the posts on the site has scared me and I feel more anxious. Do you get better? It’s all seems so bad and frightening.

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Hi sorry you have a diagnosis of lupus but welcome.there are loads of lovely caring people here who have had lupus for many years and have good advice to share.there is no cure for lupus but it can be controlled and it is manageable if you are prepared to compromise,adjust and work with your hcps.google the spoon theory,put yourself first,be kind to yourself and learn to say no.you will learn your boundries and limits.keep stress under tight control and sleep as much as you can including naps.(yes we nap too) if you are uv sensitive take all the precautions recommended.treatment plans can be long and at time arduous as drugs take a long time to work but stay strong and keep going.many of us have been through it and have lived to tell the tale me included.dont be afraid to ask we are more then happy to support you.join in we love to share and even have a laugh along the way.there is alot to take in and process I know it all seems very daunting but stay positive it's not the end of the world. keep smiling big hug 🤗 SML xxxx

Thankyou. I will stick with this site. I have had some lovely messages and already realised I'm not alone. Take care

Lupus might be rare but you are definitely not alone 🤗 x

Hi Lottie12345 I have not been here long myself and at first it is very overwhelming on here. I tried to read posts so could interact with some of the members but at first I felt so overwhelmed. It does get easier. Remember that not everyone with Lupus is the same, everyone will have different diagnoses and symptoms. Please try to stick with it as the people on here are wonderful with so much support, tips and help.I found so much help after by reading peoples posts. As you learn more about Lupus it will help you manage yours. Knowing people are going through the same types of things as you does help.

Welcome to you to kelda74.i have tried to generalize the parts of lupus that affect us all and I hope I havent over faced both yourself and lottie.lupus is so complex that we are all affected differently but there is a basis we share and if you can get your head around that then I think it gives you the ability to deal with your own complex aspects of lupus xx

Hi Spanielmadlady, no you haven't faced me, when I first joined I was desperate for information and tried to go through everything!!! It was scary at first but I have gained so much since then. You are all wonderful people especially sharing some of your symptoms. This helped me a lot after the initial shock I came on in small doses (just reading what was familiar to me at first) and started to feel more comfortable. I'm still waiting sinceJanuary for my first Rheumy appointment. I tested positive for SLE antibodies ( doc wouldn't tell me more) in December. This sight has made me understand what is happening to me and what I can do about it and it hasmade me feel more in control andableto face the Rheumy with questions and an understanding about what I want to know. So a huge thank you to you all :) xxx

I hope you get your appointment soon kelda I know covid has had an impact on things but have you chased it up at all? I'm 7 years down the lupus journey line and wish I could spare those who are newly diagnosed some of the ups and downs and stress of it all.im pleased we have helped you prepare for your appointment. Best wishes sent with hugs 🤗🤗🤗 SML xx

Thank you Spanielmadlady, yes I have been chasing it but found out from the hospital that my GP didn't send the referral until March and they had to send it back because of the lockdown, it was resent in May. I have been asking for help for about 7 yrs and nagging about Lupus, i found out they did tests in 2015 (which were positive antibody tests) but they were missed at the surgery. Since then my kidney function has not been great and I have been having seizures. It has definitely felt like a long wait but having the chance to be on here has helped. I have two autoimmune illness' I just hope the appointment sheds more light and hopefully some help. I hope you are doingok xxx

Jeez you could be telling my story...i tested positive in 2016 but the hospital either didnt pick it up or failed to act on it.i was diagnosed with class v lupus nephritis in 2018.i also have other AI illness inc b12 deficiency anaemia and hashimoto's thyroiditis and the lupus has also damaged my lungs and inflamed my heart.

I'm ok thank you. I'm winter ready and happy to hibernate now. Xx

I'm so ready to hibernate Spanielmadlady =D xx

So am I. I was looking at my summer coat this morning thinking it's time to wash it and put it away along with the sandles etc and curl up for a strange winter xx

I had the same thought yesterday about getting the coats washed and getting the big winter ones out. I usually hate the winter but this year I'll be glad of it as I have had a couple of bad flares due i think to the sun xxx

I hope you have a better winter.I suffer with the sun too but my chest can be worse in winter 🤷‍♀️ my big waterproof coat never got put away as we had some really wet spells so still needed it. Dont think it will be long before the stove is lit.A winter lockdown wouldnt bother me Xx

Lottie12345
Lottie12345 in reply to Kelda74

Thankyou. I will stick with this site. I have had some lovely messages and already realised I'm not alone. Take care

Lottie12345
Lottie12345 in reply to Kelda74

Thankyou. I will stick with this site. I have had some lovely messages and already realised I'm not alone. Take care

Lottie12345
Lottie12345 in reply to Kelda74

Thankyou for your response to my message. I’m going to stick with the site. Take care

If you go to Lupus UK main website there is lots of accurate information and leaflets etc that can be downloaded. Also an information pack for newly diagnosed.

lupusuk.org.uk

Thankyou. I will stick with this site. I have had some lovely messages and already realised I'm not alone. Take care

Hi,

I can so relate to how scary it seems at first. I was diagnosed at the age of 15 nearly 5 years ago now. I honestly thought my life was over before it even started. I was so wrong. I have been able to achieve and do so much in the last 5 years that I never thought possible.

I would not of been able to do it without the support of this lupus family. You are definitely in the right place for support and advice.

My biggest tip i could give you is listen to your body. Take time to rest allow yourselves breaks and don't beat yourself up if you can't do everything. ( I'm still learning everyday )

Hi and welcome to the group - you are not alone and just to say I think everyone when first diagnosed finds it scary, every body’s lupus affects them in different ways but once your on medication you will start to feel better - just try and rest when you can and don’t go over doing things xx

Lupus, can be scary as it encompasses so many symptoms and is so different for each person. The different disease overlaps all make it a maze.

My suggestion is read posts here that link to symptoms you have rather than every one.

It’s about learning to manage as best you can, the positive of lupus for me is I am now more determined. I try to live a full life even if it means a big nap afterwards. I have learnt to be kinder to myself and more patient with the world.,

This site is a place that you can be you and not that person with lupus, people here understand the weirdness of symptoms and how you will feel. It’s a place where you don’t have to explain yourself.

My advice is ask many questions, avoid reading things you don’t need to know, become self aware what leads to what and when, ( you will soon learn patterns) and know you can rant, cry and laugh with this group. We have got you.

Lottie12345
Lottie12345 in reply to Hamptons

Thankyou for this. I’m still getting my head around it. My hips have been dreadful. Although meds have helps. Having problems with my eyes , Sjögrens. Terrible sting feeling in legs and arms. and been unable to sleep whilst everyone says you feel tired I’ve felt hyper. Hay ho! Take care and thanks

Hamptons
Hamptons in reply to Lottie12345

Ahh, we didn’t say when we sleep. Normally, when it’s least helpful. I often have hyper stages normally before a crash as my colleagues will tell you. Hip pain is terrible, I feel for you. There are good rooms out there for eyes, I just use the optrex sensitive twice daily but there are others. It’s just about maintenance, do any physio exercises, moisturise everything, do just enough rather than too much and find a pain regime. I try to take painkillers only as a last resort. I use compression gloves for hands and wrists, hot water bottles for everywhere and tens machines. Experiment, I did acupuncture which was great for fatigue useless for pain. Take magnesium, try Epsom salt baths for stinging.

Find your path, takes a while but you get to know yourself and your triggers. You may choose to ignore a few every now and again and it’s fine. To use an over used phrase find your new normal but keep the bits of you that you value, don’t lose yourself to lupus.

Lottie12345
Lottie12345 in reply to Hamptons

Thank you. Appreciated. Take care

I have been diagnosed with lupus since 2004. But I could not say it’s been continuously troublesome. There have been times when my joints have hurt horribly and I did Have cataracts in 2010 but Ihave had long periods when my medication gave me a normal life. So Lupus has ups and downs. And I suggest if you have a problem, share it. The good sense of others will help. This forum will demonstrate that.

Thanks appreciate your comments. I’m obviously not alone.

Hi Lottie, this is a site where everyone totally understands the fear and distress caused by illness. Here you will find support, advice and humour which will make life better.

Hi Lottie,

As there are a lot of posts like yours here, I've been a bit lazy in my replies and have copied and pasted my first ever post on this forum as it gives some general perspective of Lupus.

Since my first ever post here (below), there has been some significant and positive changes to my condition over the last few months. My symptoms seem to have subsided considerably. This has led to a reduction in my prednisolone.

I still get mild aches and pains, but nothing like what I had before. I've also been able to exercise a lot more without getting fatigued or having to wake up with stiff joints. To give you and others on here some hope, recently me and some friends went on a 10 mile walk around Ashridge Estate. The day before, my family and I walked around Brighton. We amassed nearly 9 miles. A couple of days before this, we walked around and climbed each of the 4 hills in Northala fields TWICE! Unfortunately, all the healthy aspects of this exercising were wiped clean by having ice creams, milkshakes, and various other very naughty treats before and after each of the walks!

Now, before I ramble on, here's my initial post on this forum:

"Firstly, I hope everyone is keep well at this difficult time for all – and more so for folk like us with serious underlying conditions – and I hope we all have managed so far to steer clear of this dreaded large.

I’m a 44 years old male from the UK. I was diagnosed with Lupus in July 2008. Like most, to say I was distraught and scared witless is an understatement. I was worried for myself, but more than this, I was worried for my wife and mum. If it was just me alone, I would’ve been absolutely fine with it and would have just gone with the flow.

Prior to diagnosis, I was an absolutely fit and healthy guy. Very rarely sick. I was playing football twice a week – sometimes twice on the same day, afternoon with my work colleagues, then evening with my friends. I went to the gym twice a week. Ran twice a week. Surfed a couple of times a year (wasn’t very good at it… and still not very good at it now). And a few other sports thrown in in between.

But all of this ground to a halt soon after returning from a ski trip. After returning I felt a mild pain in my left knee. At first I thought it might have been a mild strain from football, but couldn’t think how I could have got it. Then I got the morning pains and fatigue. Couldn’t bend my knees or fingers, walking up and down the stairs became difficult etc.

I was sent to a rheumatologist who at first diagnosed it as arthritis. After initially being distraught, I thought “OK! I can live with this”. But soon after I received a letter telling me it was SLE. I’d never heard of this so done a Google search. And that was it! I was scared witless. Distraught.

I was put on the usual base line drug of Hydroxychloroquine. Then a couple of years later I was on prednisolone.

I had no organ involvement until 2017 when all of a sudden my kidneys were attacked. I was put on a high dose of steroids and mycophenolate. I was also asked if I wanted to participate in a trial for Belimumab (Benlysta). I’d read of this drug and the feedback seemed very positive, so I jumped at this chance. As with most trials, the only downside was that I could be trialling the REAL thing OR just a PLACEBO! But I was up for it. Here’s a link from a UK forum I’m part of of my journey on this trial. Warning! It’s a lengthy read! thelupussite.com/forum/inde...

I’m currently feeling a lot better than I was a few years ago, but then I’m also on very high doses of all my medication!"

Thank you for replying to my first message on the site. You have given me hope and I realise I’m not alone with this lupus. I too thought it was arthritis... replace and fix to be told I have lupus and shocked when I have released what it means or may mean.. I’mDistraught but realise I’m not alone now I’m on this site. I was always in the gym and swim keeping fit and healthy both physically and mentally. My hips are feeling better I am on steroids and Hydroxychloroquine. I have Sjögrens and my eyes are blurry which is worrying me. I’ve had dreadful stinging and burning sensation in legs and arms and whilst everyone seems tired, I seem hyper and can’t sleep which is not helping me. I’ve only been on the drugs 7weeks or so and believe they take time to get into your body. I wish you the very best with the drug trail and will obviously be interested in the outcome. Again thanks for the post and maybe in time I may be able to do a positive and reassuring post for a newly diagnosed

You're welcome. We're all here to help and support one another the best we can - advice, guidance, provision of laughs :)

The drugs do take time to kick in. If the pain is very bad, you can always ask your consultant for a steroid jab. Gets to work a lot quicker.

Blurry eyes can be one of a kerzillion things. I have blurry eyes but have a sneaky suspicion that's because I spend far far far too much time in front of the computer. Need to work less!!!

My trial is now over and I'm just waiting for the results, which will come once the ENTIRE trial is over. I believe that'll be in October 2021. But the way I felt after the infusions, I'm certain I was on the real thing. Either that or the power of the placebo is immensely immense!

Look after yourself, and from experience, as hard as it may be, try to keep your mind off the Lupus. It is blooming hard, I know, but it really does help. Again, the mind is spectacularly powerful, and if you can kid it every once in a while, it can help for a little while ;-) Put on a film. Listen to music. A stroll in the park with some friends (not on your own as you'll start thinking!!!). Anything to keep the mind away from horrible thoughts :-D

Thanks for the good advise . I’m not helping myself thinking too much about the what’s ifs and feeling so out of control. Thanks reply

No you're not, so STOP IT PLEASE ;-) It'll only make you and the Lupus feel worse.

Hello lottie I'm vince and only joined here today,but feel at home already,so many nice people to help with your concerns,so like me if in doubt just ask and youl be surprised how much support youl receive x

Lottie12345
Lottie12345 in reply to Vsully

Well we are not alone. I’m pleased I’ve joined now. Lots of lovely comments and support just getting my head around it all. Take care

Hey I just got diagnosed this year as well! Personally I already am feeling eons better on medications then I was just two months ago. I am scared too of what might be in store in the future, but we aren't alone, and lupus is already much more manageable compared to just a few decades ago. Whenever I post on here, even if it seems dumb to me, I always get helpful information! Don't be afraid to post and ask for tips!!!

Good to hear your granddaughter is doing well.

Forgot2mention
Forgot2mention in reply to baba

Thank you

Hi,

This link may well help?

All the downloadable

Factsheets are here:

lupusuk.org.uk/publications/

It does take time and effort to understand this very difficult and complicated disease.

Best wishes.

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