Im new to lupus just been diagnosed.: Sadly i have... - LUPUS UK

LUPUS UK

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Im new to lupus just been diagnosed.

Sadly i have just been told i have lupus it was such a shock as it has been well over a year since my first symptoms started.After a lot of doc visits he finally agreed to some blood tests which of course started the whole episode of more appointments and more doc visits.When my rheumy told me i have lupus i said what is that! am i going to die,he said the desease effect everyone differently and you have it mild.that was more or less it he gave me a leaflet a prescription and see you in 3 months for more blood tests.of course i went straight home and looked it up on the internet.

it was such terrifying reading, later that night i cried and cried as it sunk in that i have got a serious desease and no one to talk to about it who could really understand.

so once again went back to my docs who has been great and explained everything clearly which has helped and informed me of this web site, but no matter what all the professionals tell me i know its going to take me personally sometime to deal with it myself.

anyone got any tips on how they dealt with being told?

25 Replies

hi pinky i was diagnoised 2 years and 2 weeks ago, and i still dont think its sunk in, i was a working loan parent i have a 14 year son with asd and adhd and have felt like dot cotton for about 5 -6 years then all of a sudden i lost half my hair ( i looked like fryer tuck lol)and my whole body came out in lesions and so i had blood tests and scalp and skin test and yep i got lupus 2, sorry my hand is really killing me today cant write properley, my advise after all that is DO NOT RESEARCH TOOOO MUCH , and write everything down any rheumy/dermy/thoacic meds app ask the dr 2 copy you in on them so you know what is going on with you i hope i helped a bit :))

thankyou i will definatly not research anymore its too frightening and makes my irritable bowel flare up due to the stress.i have been keeping a daily diary which is so helpful when you do see doc as you get so many different symptoms at different times.

lupus uk have a booklet and dvd for newly diagnosed patients its very balanced they also have phone contacts so you can speak to someone who has been living with the disaese

Thank you I will contact them as I need the DVD for friends and family who bless them are trying to understand.

Hi, I get what you are saying. It took ages for me to be diagnosed (things started after I had my youngest 12 years ago). However, I found being diagnosed helped, at least I knew what I was up against. Yes, don't go over the top on the internet, but, I've found keeping a diary is useful and also make notes before and after appointments. Number one rule, look after yourself. Take care.

in reply to Jaxqueline

thankyou jaxqueline its hard knowing you have lupus, as now im always looking out for symptoms to get worse. everyday there is something else to worry about its difficult but im sure in time i will come to terms with it.

It does take a while to get your head around Lupus.

Contact Lupus U/K get that DVD it is so good, and they have a wide range of leaflets,and if you can Join Lupus U/K where we are kept up to date with all from the New & Views and also it puts us in touch with our Local Group.

Love & Sunshine

in reply to janiceray

thankyou for your reply i have just contacted lupus uk and they are going to send me everything they were brilliant and gave me lots of positive advice which has helped me so much as i have even been too scared to go out in the sun recently because of rash.

Took me a few months to accept Lupus was goingto be staying with me for good.I have good and bad days like most lupies.I think i did the same and went on the internet and really frightened myself with all the info!Lupus uk is a very good place and gave me alot or reasurance when i needed honest informative answers,I had suffered for years not ever knowing what was the matter with me,,at least when i got some answers i could then decide how to help myself too.I also love being part of a group where we love to share our daily ups and downs with Lupus,,and know others are feeling the same and we are not alone,,find us at Facebook,,,Lupus is real!! you will be made very welcome.

in reply to

im so grateful for everyone who has replied to my blog i dont feel so alone as before i was diagnosed i had never heard of lupus or new how serious it can be which is so hard to explain to friends and families.

facebook seems so complicated ive just got my 13yr old daughter to help me (god she makes me feel old) bless her she has been so good.

Hope it helps and I would reiterate Dawn's comment - go on to "Lupus is real" on Facebook, it has been a real blessing and encouragement for me.

Is that your pup in the picture? Gorgeous....

in reply to Jaxqueline

hello jaxqueline yes she is my pup(lottie)but she is now 6ys old but i love her and she keeps me going as walking her twice aday is so good for my joints. i promise i will try t give facebook ago.

Jaxqueline profile image
Jaxqueline in reply to

She is lovely. I have an 11 month old retriever Hudson and she is such a joy (most of the time - poop scooping isn't my favourite thing). Incentive to go out and exercise and fresh air is wonderful and also that undying loyalty and affection....

Hi , i was diagnosed a year and a half ago and like you was shocked and very scared. I have mild lupus and sjogrens syndrome . at first i read about it online and thought omg my life is basicly over . I too am a single parent of a 14 year old girl who is contantly wanting running here there and everywhere , plus i work (have to to pay mortgage and bills ) but you do cope and its not been that bad . i dont know how mild yours is , but with a positive mind and a sensible head you will get by . i was told i had the right frame of mind in basicly ignoring it dont think about what might be think about how you feel at that moment and if you feel ok carry on life as normal . but REST when you dont and dont ever over do it . If you feel tierd have a sleep no matter what time it is . i am still working , still running my daughter around , running a house , walking my dog . all the things i did before , i have just learned when to sit down and think the cleaning can wait till tomororow . just remember everybodys lupus is different and effects in dif ways so dont go by all you read , go by how you are feeling . take care

in reply to deb9866

thankyou so much for your comments i really appreciate all the help and advice i can get as you probably have experienced yourself that docs just aren't very patient at explaining things.

and yes my daughter does keep me busy but she has been so good aswell she helps with ironing bed changing and on down days she makes me lots of cups of tea i dont think i could cope with this without the fantastic support of my family.

Sorry to hear you have the diagnosis, it's very hard to accept at first, you actually go through a form of the bereavement process when getting a serious illness diagnosis so you may feel very angry, depressed and other emotions before you get to accept it, I too have it mildly which just means I don't have any major organ involvement but I get all the other symptoms and bits and peices that come with lupus and the other autoimmune diseases that I have, it took a long while for my family to come to terms with this as well and they had the same emotions as I had but at different times which made it a bit difficult at times, I've been diagnosed 3 years now and think I've more or less come to terms with it all and so has my family but there are still family members who aren't so close who don't understand or take on board the problems I have.

I hope you read everything that you can about the disease to help you understand about it but just remember that not everyone gets some or even any of the major problems and hopefully you'll stay with the mild version, take it easy when you need to and do what you can when you're well wishing you good luck and loads of hugs xx

thankyou cathy i will try my best to get on with my life but it is hard and is going to take sometime, i just want to feel lookafter by my docs and not just a number which i feel at the moment. is it quite normal to have such a long time between appointments as my next appointment is 3 months away,which makes you feel as if you are left to get on with it and i feel docs just dont understand the emotional side we all get being told you have a desease.xxxxxx

OMG you sounded like me when I was first diagnosed, cried my eyes out, then spent hours on the internet.............Im lucky I have a very good rheumy but my GP is useless as most of them know nothing about Lupus, I keep a diary of any symptoms I have and take this with me at hospital check ups I have also changed my diet and just try to keep myself moving, on days I can, but I try to take one day at a time............that's all you can do and tell all your friends and family so they know. And most of all make friends with people on here as we all support each other the best we can.............but try not to stress out too much because that doesnt help either.........xxxxxx

Hi there Pinky....so glad you are finding this Blog helpful (I do - as I live in a "backwater" as far as being near any other SLE folks - and my husband is kind and understanding, but out at work for a lot of the time). I agree with Cathy that you greave for the life you HAD and the things you WERE able to tackle before, that take so much more effort now. Even though mild - it is still necessary to PACE youself, and don't feel guilty if you need to oversleep every so often. One of the common side effects (as you'll discover on here) is not being able to sleep sometimes - I try to catch up with cat-naps during the daytime, but I realise that's not so easy when you have children. Your daughter sounds so caring...that is a blessing.

Yes - many GPs DO need to gen up on this condition! Ask at your Rheumatology Clinic to see if they have a nurse/practitioner - who may have more time than the Consultant to answer any concerns you have. Medics in the UK are often overstretched and tired themselves - so I empathise with them, having worked in the NHS as a Medical Sec for many years prior to retiring early. Be honest if prescribed medication is making you feel worse - they are "feeling their way" too. For instance, I took Methotextrate for 5-6 months and it made my joints swell to twice their size and a burning skin rash - it was only in A & E that I discovered this was a common reaction to this particular drug. I'm now on Plaquinel and Naproxen (twice a day) and this has brought about a massive improvement to symptoms and pain level. Hope this helps - sending hugs.....xxxooo

in reply to Looby

thank you all for your support and kind words i know in time i will get to know my rheumy doc and he will get to know me, i just want to know that im being looked after and nothing gets missed its just too important .i have read other peoples stories on this site and i admit it has frightened me as some people are really going through it,so im trying hard not to read too much.

and yes my daughter is a blessing and i cant do this without my family.

take care xxxx

Hi new to the site, just testing if I can submit a comment.

Jello profile image
Jello in reply to SARA-M

Yes can see your comment.

Dont go on here very often only when im feeling down but it does help.

Jello

Hi Pinky

OMG I could have wrote your original post 8 years ago! only difference was, I had a newborn baby(!)

I agree wholeheartly with all the comments, all good practical advice to get you through.

It is a grieving process, as your life will change, going through denial, anger,you feel cheated about what could have been and angry about what might be, passive acceptance and then in my case pulling it all together and getting on with your life.

Keep a diary of your symptoms- I see my consultant either every 3 or 6 months, I type up a summary of the time since the last visit and split it into general health i.e. have I had colds and virus (not SLE related) have I had bad days with joint pain, any flares, any extra pain killers I had to take, how I felt mentally, then what exercise I have done on a regular basis, also importantly list what medication you take as he ALWAYS asks this first. I actually give the consultant a copy of the A4 sheet for his records- so as I go through the summary he has a copy and I have a copy- so no mis-understandings occour.

Get a phone number off the hospital which you can phone in on if you have a flare and need advice.

Find a knowledgable/ wiling to learn GP, I was incrediably lucky as one of the partners in my practice specialises in rhumethology and works in one of the clinics I go too.

I really wish I had found this site 8 years ago! The feeling of being alone and isolated with this disease did make me feel very sad and was difficult to bear, so keeping posting and logging in, the support and warmth in this site is fantastic.

Hope this helps

Take care

Davina

in reply to deadasadodo

hello deadasadodo devina

WOW thankou for such sound advice i thought seeing my rhumy every three months was long but it sounds like the norm.I have been keeping a diary since last year which has been so helpful because as you know that our symptoms change.

the advice about gps is good because i have seriously been thinking of changing them as its hard to see the same one everytime and i cant seem to find one that has more understanding they just seem to quote a txt book consultation and i need a more honest chat.

How do i find a gp that understands lupus?

Its good to know that some people can really get on with the disease and not look too down all the time, ive found this site helpful but also very upsetting and worrying due to to gloom people are feeling,i have to hope that my disease does not cause me too much trouble in the future because life goes on

thankyou

debbie xxxx.

Hey all, I was diagnosed 2 years ago, healthy all my life, then all of a sudden one day I wake up and I can't move, the rest is history. So my advice, take meds on time, exercise, eat well but above all remain positive, lupus flares when we are stressed, it's hard I know, but we have to be strong and we can be, it's a vicious circle otherwise. So take it from one who knows, it will be ok, we can face it together, if you feel down, in excessive pain, too tired to move tell someone, don't suffer in silence, that's what we are all doing here, we will support each other. So, chin up peeps and have a good day all. Xx

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