What,s worse lupus or rheumatologist: I haven't... - LUPUS UK


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What,s worse lupus or rheumatologist

letslaugh63 profile image
12 Replies

I haven't been diagnosed and I'm pretty much terrified that I could have lupus,praying that I don,'t for two reasons.1st reason is I just don't want it as reading some of these blogs is like reading a horror story and I don't want my life to change as much as I say it won't I think lupus might have different ideas.I sometimes think to myself what have I done so wrong on life to get punished for the rest of it because it seems to me that's pretty much lupus.I have the most admiration for all of suffering with lupus or another autoimmu e disease but it's not for me ,I hope.2nd reason it's terrifying enough to have lupus but it seems to me reading some blogs equally so is not having the right care.some of these so called doctors ,rheumatologists and so called lupus experts frighten me in the way patients are treated.I'm not saying click your fingers and you'll be seen but I think you all deal with this remarkably well and if you say something changed or some things not right or I feel really ill you should be seen as quickly as possible no matter if you saw rhuemy 2 months ago or 2 days ago as it's a very unpredictable disease.my heart is with you all in your struggle wish I could wave a magic wand and make all of you well,but I can't but I can wish you all well x

12 Replies

First of all I hope to god you don't have lupus either love, I find out for definate on friday and I am terrified. BUt iv come to terms with it now :) my life has changed incredibly but in a way I'm grateful for it, I see things in a way that I couldn't before, Who matters Who doesn't and most importantly Who really cares. LIfe seems much more important when death knocks on your door, I feel relieved tbh! I'm not insane and I'm not faking it, I didn't do anything wrong in my previous 8 pregnancys which 1 was successful. You have not Done a thing wrong love, life is just cruel unfortunately. Turn it into a positive tho, look at everything that you have that means you keep living. YOur not alone in this! Life beyond lupus love you just need to grab it by its hairy dangles grip tight and don't ever let go! Your stronger than lupus!

letslaugh63 profile image
letslaugh63 in reply to

I k now I am a very strong person that's not why I did blog I did it because no matter how strong a person is things can still terrify them.I know people/friends look at me and say she a toughy she'll be OK but that doesn't mean s*** to me when I'm struggling and no one there,but as always I'm there for them no matter how I'm feeling.didn't do blog for that either I did it because it seems to me your all fighting this illnesses in more than 1 way.against lupus itself and for the right care/treatment and a lot of you for financial help,which I forgot to put in blog.all of theses are problems and all scarey in my eyes and considering stress a bit part of lupus I think you all should be treated more considerately than you are.lupus a very scarey illness,not getting right help very scarey and not having enough money to eat/look after yourself very scarey it all adds to terrifying x

in reply to letslaugh63

Everyone is different like everyone keeps saying, you Might cope fantasticly! Try not to focus on the bad bits on here its just us lot being grumpy :P having a place to write your emotions is a great healer. I'm having a flare right now and I'm gunna get up do tea then welcome my hubby to be home with open arms and a "I'm not in pain nor do I feel like I'm going to throw the contents of my stomach up" smile :) its all about mind over matter for me. Once my lil un is In bed ill slump down and won't move but I paint a face on for My family, it works too, they say healing starts from within and I tend to agree. Once you get your answers you can build on it :) iv wondered Why I'm like this and iv beaten myself up thinking iv Done something to deserve it, you know where it got me? Depressed, more poorly and No1 wanted to come c me lol. CHin up love it could be worse :) xxx

hello letslaugh

please please remember that we are all different and cope in different ways with whatever life throws at us.lupus is very serious for some people and mild for others the problem is we just dont know how it will progress through our lives so we are cared for by our rheumies,gps and lots more.

lupus can be very unpredictable it can also behave itself too and not cause too many problems.

take myself i have been diagnosed for 2 years but had lots of aches pains fatigued ect for years before anyone picked up on my bloods. in some ways i wish they never had found it because since knowing im more paranoid than ever and on a daily basis i tell myself that my lupus is behaving by leaving my organs alone.

yes i ache yes i get tired and yes stress is high but life goes on and you can have a life,holidays, fun days out ,i even work but there are days when its harder than others and you have to except that but be positive and enjoy what you can do.

please please please don t read too many stories on here and think thats going to be me because it might not and as time goes on you do learn that, i went through every emotion when i was told and read everything on the internet about everything and scared myself to death until oneday my husband came home to find me sobbing and said no more reading on the internet or i will throw out the computer,he doesnt mind me going on this site but he was right about knowing too much epecially since my lupus has stayed exactly the same for two years.

just remember your rhuemy might never comfirm you have lupus but keep a close eye on you for anything that changes.

dont be too alarmed by what people say about their docs or hospital its how you deal with it that counts,again we are all different,i have learnt not too rush to the gp everytime i get a pain or headache and just waited it out to see if it gets worse or better and most times it just gets better.

i know its hard because i have been there but try and relax and put everything out of your mind until your appointment and then take it from there and your rheumy may turn out to be fantastic. think positive.

Sher78 profile image

Totally agree with pinky56, can't possible answer that question simply as each condition can differ in severity, plus it all depends on what other little niggly conditions u have along with them (ie Sceroderma, MCT etc).

People tend 2 blog more when things r s****y, every1 needs 2 'sound off' every now & again, but I cannot stress enough WE R ALL DIFFERENT!

I have been very fortunate that in 19 years of being diagnosed with all this crazy s***, I have only experienced 1 major flare. Sure, I've had a few little blips along the way but I have up until the last 2 years been able 2 lead a relatively normal & decent life unaffected by lupus, & I'm pretty sure I will again :)

in reply to Sher78

hear hear sher!!!! life is for living,even heathly people have bad days and hearing you have had a pretty decent life considering cheers me up no end GOOD FOR U, maybe we should encourage more cheerful blogs occassionaly and let people on here know that we can have a good days too.

letslaugh63 profile image

Sorry if I have upset anyone over writing this but this is how I feel about some of the blogs on here I wasn't self pitying and sorry if it came across as that of course I'm worried/terrified but I don't live my life around feeling like that.I've read a God few blogs/questions on here that would terrify anyone waiting/just been diagnosed. But I'm not sitting waiting for bad things to happen.I just can't help feeling for those going through a hard time so maybe I wrote it wrong .I'm so glad for the people that are coping well with this but there are others not so lucky and I could/have cried for them.I count myself as lucky but still scared of not knowing and have encountered doctors myself who never listened and years later atpaid the consequences of their incompetence

Sher78 profile image
Sher78 in reply to letslaugh63

Oh u haven't upset any1 love, & u certainly don't come across as being full of self pity. It's hard trying 2 adjust & learning 2 live with ANY illness, especially 1 that can make u feel different from 1 day 2 the next.

Personally, I think it's hard when u're kind of in limbo & haven't had a clear, firm diagnosis, so I totally understand u being concerned & worried. It IS awful, I myself often feel guilty about posting that things r not too bad 4 me at the moment, but I know that other lupoids r happy 4 me & that hopefully, when they get a little bit of respite, I'll b very happy 4 them too, it's just important 2 remember that lupus isn't a death sentence (although it sometimes can feel like it) & if u can learn 2 accept u're illness, u're better equipped 2 fight it ;) x

mstr profile image

It was indeed a valuable point and I think learning to live with this illness is just a learning curve and I think I will go on learning. I think what Pinky and Sher have said are totally relevant in that we are all different and we will all cope differently. I think LetsLaugh you are right to be worried and we all find our own resilience levels. It is a natural process to go through the denial, anger, blame, reluctant acceptance to eventually full acceptance. Although I say I have fully accepted there are still some days when I think No they must have this wrong (not often now but the mind is a funny thing). But learn to live with it we do eventually do....it's a case of sink or swim. My physio made a good point when I said I wanted to run again so I could teach my grandson to ride his bike without stabilizers. Her response was well you like swimming, can you run in the water? It was a good point and very thought provoking....there is a lot of things I can't do now but I prefer to think about what I CAN DO. This helps me to stay positive (not always easy). Like Pinky said you learn when to react medically and need to see the GP and when you know you can 'ride it'.

It's not all doom and gloom....honest. I have met (virtually) some very nice people on this forum. We have bonded over our commonality......no one other than us would understand the flare up process and it's symptoms. I also value the experiences of others who have had this illness for years and are still here to tell the story (albeit to have a rant as we all need at times/and appreciate the funny tales too:) ....people are here and coping because that's what we have to do. This condition will offer us different experiences than what we expected out of life.......although I still consider it's a wonderful life:)

letslaugh63 profile image

I don't have a lot of faith in doctors which is why that prospect of things really do scare me I had problems years ago periods and women's stuff and was told to get on with,when it got really too much I demanded to see gynaecologist, by then it was too late they tried their best but months later I had a hysterectomy at 29again I was lucky cos I had kids.my son was born with heart defect and local Hosp said nothing to worry about,my son had open heart surgery at 5 months old and could've died at anytime again I was lucky.my 1 St husband went to docs with chest and was given cough medicine and was eventually sent to local Hosp and passed from department to department,it took for him to collapse out with district another Hosp where he was given 6 months to live not so lucky but in a way we were we got 6 months together.life is hard and I know it but hasn't beaten me yet don't think for 1 minute if I have lupus or whatever I will let it beat me or stop me from living.but I think I have every right to be frightened/ wary of doctors.

Hhsegibs profile image

To be honest I didn't even know what lupus was until I got a diagnosis, I did plenty of research like you have done and yes some of it is daunting but I just take every day as it comes. To be truthful I was pleased to finally receive a diagnosis as I have had so many misdiagnosis and many of times I've felt like a hypercondriact as I was ill and had symtons but Noone could say what it was. Fortunately mine is mild so I live a pretty normal life things can be tough in that I'm always tired n achy but hey I am just thankful thats all I suffer so many people are worse off not just lupus sufferers! Chin up and whatever the outcome try and remain positive, stress will only make it worse well for me it does.

stretch profile image

you are absolutely spot on with your post,especially about doctors.they damaged me so much psychologically,that i despise them. they are arrogant,ignorant,dismissive, like privately educated tories attitude who know nothing about suffering and are mainly interested in how much they can earn and their lovely families that sit in photo frames on their desks.they damage people by what they say to patients as well.i have heard some appalling things and am intending to set up a website about the whole subject if i can get my brain to work properly. i would try to look at it like this..some poor sufferers get it from childhood,others not until 40-50 years later,so that is 2 completely different lives. after coming here for the first time,i also thought how incredible the people in here were and got great relief that i was not the only one suffering some of the things i was...i cried for a while. hope you get the all clear.

:- )

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