Just diagnosed

[dglet]

hi guys. This is all new to me. I was diagnosed with SLE last week. Trying to get my head around it all

[mstr]

Welcome to the site. If you read anything I suggest stuff from the Lupus Uk website, dvd, books etc can be ordered. They will also have a list if any support groups are near you and this may help. It's a great site and everyone on here will help you if you have any questions....I have found it immensely helpful.

[dglet in reply to mstr]

Thank you so much, that's reassuring to know. It's nice to know there is somewhere you can talk and ask questions from people who know how you feel. Thank you

[dgleds]

hang in there

[Malteser]

Yes welcome, we are all in the same boat. I had read a book called '' The sun is my enemy'' about 40 odd years ago, think it was written by Henrietta Adjalem, or someone who sounds like that... years later, I thought 'nope, this does not sound at all like me'.... then realized as yrs went by, that there are so many different variations of Lupus.. in recent years, I came across the book which really helped and made sense to me, and that is called '' talking about lupus' written by Triona Holden and Dr.Graham Hughes, who actually was treating me at one time. Both the books mentioned are great, and if the sun really is your enemy, read the first one I suggested ..first... ask anything you want, we will reply accordingly.

[dawnepearse]

Welcome, I was diagnosed with SLE last month after having Discoid Lupus for a few years, I had a flare that basically rendered me useless lol, my main advice would be to alway try and remain positive

[traceymcx in reply to dawnepearse]

hi dawnepearce, im relitivly new to this myself only dx 3yrs ago with discoid lupus finding it hard to cope wirh atm. I seem to be going worse my energy level are no existant at the mo, ive had two water infections in a month my body feels like its burning inside, i have developed reyhnards too. Plus my hair is falling out with bald patcges how long will it last does anyone know? Hugs to all (xxxx)

[dawnepearse in reply to traceymcx]

My hair fell out along the parting and around the crown, they say it won't grow back and now with the SLE my hair is thinning, bit upset at first but there are worse things as I keep telling myself so count myself lucky. Energy is difficult especially with the summer we had, quick naps if you can fit them in, even 10 mins is helpful, sun screen, cover ups, sit in the shade etc, did not have any infections so lucky there, find a list of immune boosting foods and I began juicing, fruit and veg to get a bigger quantity of vits and minerals in me, seems to help with the energy slumps x

[Pipido36]

Hi, welcome. I have been living with Lupus for more than 12 years and it took me some time to understand it. Make sure you get as much information as you could this really helps. Stay positive and have someone to talk to when you feeling down. Take care and keep on keeping on!!!!! Xxxx

[ijeasike]

hi will i say welcome to Lupus (lol). but just take ur meds regularly and have rest dnt stress urself just listern to ur body and know when it tells you to stop. wrap up well.

take care God bless

[dglet]

Thank you so much guys. I'm just finding things hard at the moment I feel like I'm on a rollercoaster of emotions. Got an appointment with a dermatologist next month and waiting for an appointment to see a rheumatologist.

[sandwiches]

Hope the diagnosis wasn't too much of a shock for you. Keep logging on to this site and you will find a lot of support and advice from people who care a lot about your well being. Listen to your body when you don't feel well and wrap up warm! Take care.

[Flippityfish]

Hi and welcome!

Its a tough time at the beginning but we are here for you if you need us!

[dglet]

Thank you. I'm not sure of the level I have get. Been called into see my Dr tomorrow as he needs to talk to me about some tests I have had done for my liver and kidney functions. Got my appointment for the rheumatologist for the 4th Dec... Does that seem to long??

[AnnieKhan in reply to dglet]

Hey I was diagnosed 3 weeks ago and am still trying to get my head around it. It's hard but hopefully we will see good days. The appointments are very far I had the same problem but I called the hospital and told them I was in too much pain and they gave me an app for the next day. So try calling them again. Good luck

[dglet in reply to AnnieKhan]

Thank you. I will give that a try. I am off to see my gp in an hour and I'll mention about the pain I'm getting in my knees. I was diagnosed a week and half ago. As you say I'm still trying to get my head around it too. But its great to know there is a place like this where you can come and talk to people who know exactly how you feel. I hope your appointment goes well. Good luck

[Looby]

Hi dglet and welcome to this friendly site!

If you have a "clued up" and considerate GP, together with sympathetic consultants who are able to give you more than 10 mins of their time, then that is a really good start.

It takes quite a long time for many of us to strike a balance between meds that ease (not cure) our symptoms, and the inevitable side affects from taking some of these. For instance, Plaquinel is very often prescribed - and can take several weeks before it becomes effective. I took it for about 3 years and it really eased the joint pain, but then I began to have severe headaches, and reactive rash when in bright sun, and the consultant concluded that it was most probably the Plaquinel. I was also taking too many Tramadols daily. Steroids were prescribed by my GP and I won't go into that saga! (You can put a search in on here for Prednisolone and see other peoples' experience...). Now I am completely off them and trying for more natural remedies....we all have our own ways of managing on a day to day basis.

Common to most of us, however, is the "energy bank" (look for "spoons theory"). If we use energy on one day, we generally have to "pay it back" afterwards (i.e. rest up). If I have something important coming up, I try to take it easy for a few days, and even then, it's not possible to say for sure I have the strength on the day itself!

It's so right what the others have said - stay positive if you can. You WILL have good days sometimes - other days you'll be a trial. On here we will understand if you need to vent your frustration...it is tough to know that your body is limiting what you are able to do. You know it better than the medics, however - so tell them of the changes happening to you - it helps to keep a diary.

Do hope this helps!

[dglet]

Thank you Looby. I have an amazing gp and I feel lucky in that respect. I now understand I have to listen to when my body feels tired as I found out on Monday. I have never felt so exhausted and slept for hours which I never do. I think because I was so tired I became very emotional. Which is hard to deal with because usually I'm such a strong person and always full of energy. I will also do what you suggest and keep a diary.