I'm newly diagnosed and I'm scared :-(


I was diagnosed 4 weeks ago with SLE, and I’m scared,I have an underactive thyroid gland diagnose 3 months ago and Reynolds syndrome for 6 years probably longer. that make it 3 autoimmune diseases. I have been told by my GP to go and look it up on the internet as its going to take 10 weeks to get me an appointment with a specialist in the U.K with my home local hospital. My GP is good and knew what she was looking for, she ran all the right tests very early so i am happy for an ealy diagnoses:-)

When I read everyone experience’s I feel I should be great full that my symptoms are not that bad but some days they feel like they take over my day, I feel emotional about the unknown, I’m losing weight 2-6kgs a week and can’t control it which is worrying me. My hands and wrists hurt even though I am on minor pain relief for them, I really worried about the sun, and how that will affect my body, does it affect everyone or just some poeple? i'm worred about picking up germs from where i work, (with children)

On a plus I have a wonderful family and a fantastic group of friends that I know will support me no mater how hard it gets.

Any advice, any help would be great :-)

vicky xxx

23 Replies

  • lot to take in isnt it! good you got your diagnosis so early. it will take time to find out how it affects you what works and what doesnt lupus uk have a dvd for newly diagnosed patients and are really helpful get in touch with them they also have contacts who you can ring for a chat.

    welocme and all the best

  • thank you im going to order the DVD today, i have just found it on their web site thanks xx

  • Hello Vicky

    Not surprised that you are scared, but dont try to second guess the path that this will take. It is what it is, and how it affects you may well be very different from how it affects the cases you will read about.

    You might want to join a forum to get some practical advice and emotional support. But again you will hear horror stories which may scare you further.

    Take it easy and if you can get a referral to St Thomas' in London.

    Many of us can give you practical advice and coping strategies either publicly or on a one to one basis. Lupus can be very isolating, but you are not alone.

    Be well. Martin

  • thank you ;-)

  • Sorry to hear that you 've been diagnosed with so many things, I too have all of those and Sjogrens Syndrome too, it's hard to get a diagnosis like SLE and it will take you some time to come to terms with it and learn to cope. As Lupus can be very varied I hope that you have it mildly, you will have good days and not so good days you just have to learn to take it as it comes, the best thing to do is learn to pace yourself especially if you are fatigued, there are plenty of support groups around both on here and facebook and local groups you should look on the Lupus Uk website to find a group near you, the more support you have the better it's such a relief to find other people who have the same as you, you don't feel so alone and scared then. I hope the weight loss slows down, as long as you don't go on losing it may be a good thing as some of the medication you may be prescribed will make you gain some weight, I always seem to be fighting a losing battle against putting on weight despite being on the thyroxine, but that's just me everyone is different and reacts differently to the same things. The only thing I would recommend for the germs is get your flu jab every year and stay away from anyone with a heavy cold or stomach bugs or something like shingles, I hope you find out what you want to from the internet but do remember that not everyone who has SLE gets all the symptoms and problems you will see some scary things but it's not necessarily what will happen to you so be aware of the symptoms so you can report them to your Dr if need be but don't worry about them

    Just remember you aren't alone we are all here for each other xx

  • Thank you! my thyroid is under control, so they say, but the drs are now say thing the you can lose weight by having SLE too :-( I think your right about the fatigue, some days I’m fine and other days simple things seem to take it out of me, sleep and rest is the key, trying not to volunteer for too many things isn't easy. I’m sure I will get there:-)

  • Hi .... I am newly diagnosed too.... 6 weeks into treatment!!! It is a lot to take in but it takes time!!! I was recommended to join the facebook group Lupua is Real... Its great!! Hope to see you on there xx

  • thank you i will look into the FB group do you know if info pops up on you page for others to see? its just we havent told everyone yet and i would hate to break the news to family via FB :-)

  • Hi Vicky, there are several facebook groups not all of they would post on your wall, you need to look for closed groups they would show up on your wall but not for other people to see you could possibly set your privacy for any particular group to private but I'm not sure who would see it then you'll need to check

  • Hi Vicky,

    Receiving a diagnosis can be a scary and confusing time. I think it is great that you've joined this site because the best advice you can get is from the members of this community, who have lupus themselves.

    If you'd like I can send one of our information packs out to you in the post so that you can have a read through? I can also put you in touch with the local regional group and local trained contacts. Just send me your address in a private message or to paul@lupusuk.org.uk if you'd like me to do that for you.

    We're here to help in any way we can.

  • i will email you! thank you soo much!!

  • Hi Vicky,

    i was diagnosed around five years ago when i was eighteen and it was the most confusing and scariest time of my life. i found it extremely hard to come to terms with what was going on with my body and went into a deep depression and denial. i kind of went of the rails to say the least as all i wanted to do was block it out. it is very hard to try and come to terms with it, but you will get there =] x x x

  • thank you, i feel my emotions are up and down like a yo yo, confusion, worred, then i put it to one side and carry on and just when i think all is well, it hits me again! if only it was simple to understand xxx

  • Hi

    I would say you have been through the worst bit you will be able to find out if you react to the sun and what to do (not everyone does) i get the rashes but soon as i cool down they go so its not all bad. If you have any question you are in the best place to ask and someone will know what your going through so dont stew on anything and goodluck.

  • thank you :-)

  • just remember your not alone with this xx

  • thank you :-)

  • I remember feeling exactly like that when i was diagnosed 2 years ago, looking it up on the internet scared me to death! All i can say is it took a while, but eventually my symptoms got under control and lupus gradually faded into the background. I was very worried when i heard about sunlight it seemed particularly cruel when all i wanted to do was relax in the sun. I am careful (i would be anyway), but I don't think I'm affected, neither are most of the people i know with it. So all i can say is hang in there it does get better!

  • Also I lost over a stone when it was very active, I was eating but my body didn't seem to absorb food properly, but as the flareup settled down, the weight stopped coming off and eventually went back on.

  • Hi i have lost over 16 kg in 7 months but this week is the first week i havent lost weight so fingers crossed maybe things are settling down :-) its so hard to work out what to eat, i dont feel hungry and i dont fancy any foods good or bad ;-) thank you for your suport vicky

  • Thank you soo much everyone! it's so nice to know that other people are there and can fully undersatnd what i am feeling.

    When i first posted on here i want sure if i was doing the right thing, I now know it was the right thing to do and i feel better in my self for just reading what everyone has writen.

    It's hard to understand which symptoms and how things will develope i guess only time will tell. xx

  • Hi I m new on here I was diagnosed 4 years ago and started steroids then injection steroids in my scalp as i sufered the hair loss I stoped the steroids without telling doctors and moved from a hot country malta to a cold one scotland,this new year i was diagnosed with underactive thyroid and pulmonary hypertention so much to take in:( xx

  • I was Diagnosed 3 months ago with SLE / Sjogrens and Raynauds. Appartently Lupus is mild. Although thats good news. i have looked up symptoms and cant work out how they say its mild. It doesnt feel mild. I cant take any medication below as i feel sick with it, which i didnt before being diagnosed. Painkillers, Hydoxycholorquine, steriods, statins etc so it looks like i just got to suffer with it.

    While im sure there are a lot of people with SLE that are worse off than me, its poor old me when feeling this bad with sickness since August. Symptoms i have are Joint / muscle pains, rash on cheeks, fatigue n weakness, flu-like symptoms night sweats and chills, Weight loss, headaches, Hair Loss, depression, most of my glands around body are swollen, poor circulation, abdominal pains sickness and cramping. I have just subscribed to lupus uk and received dvd etc which are brilliant. Im 42yrs old had my heart Stented feb last year then this happens.

    Does anyone know when the Dr say Mild where do they get that information from. I had ANA tests and all other coagulant test. However im on blood thinners so would the coagulant test have shown anything ?

    Please help Lou

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