I still dont understand lupus: Hi im new to this... - LUPUS UK


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I still dont understand lupus

scarettohara2 profile image

Hi im new to this site , i was diagnoed two years just.

I hate having this , i have the rash very bad and the tiredness is just so dramatic , its hard.

Ive been having loads of other symptoms but in all honesty i think i am trying to ignore my lupus and hope it goes away lol , my sleeping is terrible , i get so tired i slur my words , my memory is terrible , pain in my joints are well getting to be a pain , sometimes my knee goes and i nearly fall over.

Ive been on anti malarials and other stuff that did not work , have not had anyone to talk to about it all though so hopefully i can now talk to people that understand.

Cant wait to meet you all.

14 Replies

I am afraid,as everybody seems to tell me and i am going to pass the on to you.You must speak to your GP(who hopefully is aware of Lupus ) or your reumatologist.Try and take somebody with you,I never have and I think that is where things go wrong.I wish you well.

Coming to terms with the differences Lupus makes in your life is vital to living with it, but it does take time. Unfortunately ignoring it doesn't work. you need to work out your triggers, and what your limits are. And these have to be variable depending on how you are feeling at the time. It's not easy but people on here will be around if you have questions. Keep going.:)

Hi, It is very difficult, I was diagnosed 3 1/2 years ago and to be honest it was a bit of a relief as it explained how I had felt for years. I take loads of meds and on the whole it keeps ticking me over, and able to cope, I do have flares and when I do I have to take time off work and recover. Hopefully can keep going like this for a few more years. You need to talk to family and friends about the illness. The letter to 'family and friends' that is on the Hughes site is good to give to people that explains an awful lot. Dont beat yourself up over your diagnosis, try to stay as positive as possible, and go with the flow, if you feel crappy, do what you need to do, when you are having a good day, make the most of it.



hi, i feel for you as thats how i was, i was disgnoised feb 10 and thought yeah at last i know wots wrong, but i was just giving a piece of paper and told to google it!!! please dont ignore lupus , yes i take 110 tablets a week and everyday i long 2 have a pain free day , however my skin is clear, which is a major step , yes i takemethotrexate see to that,along with the cocktail of other meds, and yes there r side effects and symptoms to everything we take and yes it gets u down but wot other options r there, the way i see it , its ur life and the quality of life may not b the same as a healthy person ur age but dont give up, ive research until im blue in the face, I take contol of Lupus as its my life, i educate my drs surgery i take clippings and books with me on new information i record my blood results in my metho booklets, i have every single letter that all my ologists send out, i know u prbably think o god i really cant b bothered 2 day but u have 2 until this country is more aware of lupus and how each case is indiviual , i hope i have helped, i am 43 i used 2 b a recruitment consultant im also a lone parent with a 14. old son of the autistic spectrum , i no longer work for obvious reasons but i refuse 2 let lupus rule me , i have over 500 facebook lupus sistas from america and my god they help soooooo much, please dont ignore lupus, no mattter how scared u r xx

karen x

Hi scarettohara2

Welcome to this site. You will find it very usefull ( I do ). You sound the same as me when I first found out I had SLE it has taken me 2 1/2 years to come to terms with this rubbish condition, you will get there, do what your body tells you. You will have rotten days but you will have good days make the most of them. My GP is good my Rheumy not bad, you will read different stories about Rheumy some good some not so good, hope you have good one. My memory as gone to pot to

also I sometimes slur my words, it can be funny, and frustrating at the same time. When I read some of the Blogs on this site some lupies are much worse than I am and my heart goes out to them. It is a crap condition but we have it like it or not. I Hope you come to terms soon, keep writing blogs they do help.Wish you well x x :)


This all sounds very familiar to me and I am sure a lot of others on this site.

you really do have to speak to your doctor and if need be demand to see a specialist. The right doctor is so important. Your not alone, the symptoms are such that not everyone has all of them, but what you have said of yours rings a lot of bell with me.

When I told my specialist about slurring she send me for an MRI on my brain to rule out a stroke. ( which it did.)

keep your chin up. Martin

Hi guy thanks for all the replies , it helps , i am going to start writing down all my symptoms and educate my doctor , im not really happy with my consultant as he just always wants me to go straight onto steriods , and he is only a skin consultant also , he also says i should always just go to him and not my doctors but im going to make a appiontment today for the docs, well on monday.

Ive started taking my medication again , the anti malarials and i am going to research lupus more , i think i am more into not taking medication and trying to see if a healther different lifestyle would help.

I think because no one really knows anything about lupus people do not take it seriously , alot of people say to me oh well its just a skin rash , if only.

You all seem so lovely on here , thanks for the replies.

i, dont forget the ani malarials can take upto 6 months to work. I got diagnosed about 6 years ago and took me over 2 years to accept and still getting there.. Make the most of the good days, but rest on the bad days. The main thing to do but is hard is try and listen to your body and look out for your triggers, mine pain in face, slurred speach, tiredness more than normal (if there is such a thing in us luppy people!! lol) etc. Read as much as you can but I know I can read and forget everything in a minute but it makes me feel better, but Im sure it must lodge somewhere, cause as the years have gone by sadly I have got more symptoms and I do remember things I have read but do read them again several times (lol).. Always educating the doctors is fun!! cause they look at you strange sometimes but I laugh lots, and then they think ive gone mad which in turn I say have gone luppy!! (lol) but they dont get that!! Dont forget if you dont feel well, and your not upto doing anything try not to feel bad about it, this is harder than it sounds.. Speak to friends about how you feel, your real friends will stick around and understand when your not well. Anyway ....

Keep smiling, laughing, resting, think positive, sleeping, more smiling, laughing, PMA, and sadly more resting and definately more sleeping.. Take care. She xx

Hi Scarett..the first time I saw a rheumatology doctor at the hospital I took a written list of symptoms with me as I have a tendency to go blank when I see professionals, and she found it very helpful, even thanked me for taking the trouble. Well worht the effort to get everything down on paper, good luck, hope your doctor is sympathetic x

Hi this is a fantastic site i would be lost with out it,,however if you want to chat with people that know excatly how you feel,,have loads of answers and experience then drop by and say hello,,,we are at Facebook and are called

Lupus is real !!!! Welcome you already.x

p.s Yes i got/get well it's just a skin rash!!!!! i was diagnosed i n August after years of being unwell.Bless you pet.x

Hi thanks for the replies , ive been on anti marials for 2 years now so i think its just a question of finding the right medication. would you believe it ive felt too ill to go to the doctors lol , that really is interesting isnt it.

I will get there soon hopefully , am just so tired lately.

I was reading other blogs and its funny how the skin rash that affects people reacts in different ways , i get mine in winter time really bad , its always there but u cant really see it in summer time , how odd is that considering its something to do with the sunlight , also light rays from inside bulbs.

Have thought about just going to buy some drinkable iron stuff to see if that helps my tiredness until i can go doctors , anyone tried that.

Ive asked to join the facebook page dawn , so will be great to chat to you all on there.

Hope everyones had a good day today. x

kb281 profile image
kb281 in reply to scarettohara2

Hi Scarettohara

Just a quick reply I'm off to work.

I used to take the fluid iron drink you have it in fresh orange and its much better than the horrible iron tablets.You can order it on line or get it in boots.I just cant remember what its called right now!!!!Ill its safe for pregnant women and very kind on your tummy.

I was diagnosed twenty years ago and the typical lupus rash on my face was irritating as well as embarrassing. I also had terrible joint pains and swelling. A cream steroid helped the rash and prednisolone (steroids) helped the joints. Over the years I have found that it is medication that helps the physical symptoms and reflexology the only "alternative" that helped - probably because it also allowed me to talk while having my feet done. In regards to tiredness and iron find out if you are anaemic which is common in lupus (because of kidneys). I was very anaemic and had doses of iron which helped a lot. You need to be under a hospital consultant you trust to coordinate all the different doctors you will see as well as continuity. If you are not well enough to go to the GP ask them (or get someone to to it for you) to visit you which you are entitled to do.

I hope this helps and things will get better you know x

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