Just been diagnosed and overwhelmed : Hi, I've just... - LUPUS UK


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Just been diagnosed and overwhelmed

SammJ6 profile image


I've just been told I have lupus . Feeling very overwhelmed , I have seen the dermatologist who has taken a biopsy due to the rash I get, also I have really bad joint pains. I have my 1st appointment with the rheumatologist next week.

I have looked lots of things up and feeling very confused . Any advice would help.

12 Replies
LupusAdmin3 profile image
LupusAdmin3LUPUS UK

Hi SammJ6,

Welcome to the LUPUS UK community here on HealthUnlocked.

Would you like me to send you one of our free information packs? The pack includes a few leaflets and booklets on lupus along with a copy of our 'News & Views' magazine which features lots of information. The magazine also has details of our contacts who live with lupus themselves and are available to talk to.

If you need anything at all, please do get in touch by either sending me a private message or an email and i will try my best to help you. hayley@lupusuk.org.uk

Best wishes,



SammJ6 profile image
SammJ6 in reply to LupusAdmin3

Yes please . Shall I send you my address

Hi Sammj. Sounds bad but welcome to the site.

You have landed in the cosiest safety net! There is probably no better place to be.

Hearing that word usually makes you shrug and say is that bad? The more you research the higher you eyebrows will creep up your forehead. So, then comes that sinking feeling. I've got this but there are some other things I might get. Yikes!

There is probably nothing you are experiencing that folk on here hav'nt Appointment, meds, blood tests, everything and more that we have all faced in this group.

Feel free to ask anything that is bothering you. It is a complicated diagnosis. It has many facets.

Hang in there Sammyj, you are not alone. Yes, it may be scary now, but here we have all ages and length of "service" so whatever comes your way you have so much to support you. Yes it is a challenge, but don't be overawed by it, we' ve been kicking its butt (!) for years.

The usual tip is to list everything that affects you, however small. I am sure your Rheumy will explain things to you and the more you can list all your ailments, the better idea he will have of your illness.

Try not to stress it too much as that does not help, tell yourself that we have all been where you are now, and we are here to give as much help and support as you need.

Try to take it one step at a time and ensure your consultant explains anything that you are not sure of.

I for one will be looking for your post next week, telling us how you got on. Ok?

Take great care of yourself

Lots of OOOOOs

Best wishes

Hello SammJ6!

you came to the right place, welcome to the little space where you will feel that you are not alone!

ask away and get all the information that you can from LUPUS UK and your rheumy consultant!

Mind the sun, rest a lot and stay active and positive!

love and light


SammJ6 profile image
SammJ6 in reply to claradias

Thank you Clara x

I hope it goes well with your rheumatologist, and that the biopsy goes smoothly. Sending you big hugs. X

Thank you

Hi, I diagnosed two years ago and got biopsies test liked you. I was just confused and scared as much as you're today.

You're on the right track to see rheumatologist. Doctor may give you Plaquinel and cream for the rash.

In the mean time, eat healthy diet and more liquid likes water, resting and reduce stress is important. Remember, stay out of the sun as possible or put on spectrum sun block 50+ and wear hat, long pants sleeves to prevent of UVA & B.

It'll be some adjustments, but you will get use to it after learned more about it everyday.

Be strong and hope you feel better soon.

SammJ6 profile image
SammJ6 in reply to kimc

Thank you so much. I really appreciate all the advice and it's so nice knowing there are people out there to talk to and understand the feeling .

Thank you again.

kimc profile image
kimc in reply to SammJ6

You're welcome Sam, if you have any questions or someone to talk, this is a perfect website, I'm on here often..will look for your questions. Right now, just focus on your health and you'll be ok.

Had my appointment with the rhumatologist yesterday, very nice consultant. I hadots my blood tests done and he is going to send me for a chest x Ray and also do some muscle tests . I just wish I could have all the test done in one day and then go back to get the results . Not have them all done individually. No medication given yet, just told me to keep doing my Pilates and yoga . Send my joint movement was not very flexible. That was it really. Not sure how I feel . I know I have to be patient for all the tests.

claradias profile image
claradias in reply to SammJ6

good to read this and see that everything is going well! :)

take care of yourself! Be patient!

love and light


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