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Hi everyone!
i am newly diagnosed and looking for some advice, tips and any other useful information anyone has to share. I have a ton of questions. I was just diagnosed with Lupus and Sjogrens and it was a bit overwhelming. ( when i say just diagnosed, i mean last monday haha). I am trying to deal with things and cope but its hard. I am only 21 years old and while im happy to have the luxury of an early diagnosis, i am frustrated and feel overwhelmed. I have just been started on 400mg plaquinil and 30 mg Nifediac CC daily ( for symptoms of Lupus/SJS and Reynauds). Any advice would be so helpful thank you!:)
 

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Hi Kim,

First welcome to the lupus site, it is nice to meet you.

It is a roller coaster ride of emotions when you hear that you have SLE. It is hard to take it all in. Give yourself a chance to absorb all this.

My advice is learn to listen to your body. Pushing yourself will only result in more exhaustion and pain. When you feel you need a nap go take one or just laying down helps me.

Use sunscreen at all times. The sun isn't our friend for most people it makes their lupus worse.

Members here are very nice and willing to help you with their experiences dealing with lupus.

We also have live chat where you can go and talk one on one with members.

Take care,
Lyn
 

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Pamela b
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Hi
Welcome and I am in the same boat as you are. i was diagnosed with SLE/ Sjorens, / raynards around 6 weeks ago and it has taken me until almost now to come to terms with this. I was shcoked stupid, devasted and also angry, every emotion known to man even though I have been having health problems for years and had thought I may have some form of connective tissue for several months but had to fight for a referral it did not make it any easier to accept. It is a lot to take in.
I am sorry you are so young ( I am very much older )
This forum has helped me so much, the people are just so supportive.
I bought some books from Lupus Uk and am trying to educate myself so that I can look after myself as it seems less scary if you know what you are facing.
I hope you have good health professionals and that they will support you well.

You are in the right place for support here,

I hope that you are soon feeling better and you meds keep you well
Take care
Pam
x
 

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Hi and welcome to the board.
Yes, a diagnosis of sle and sjogren's is a LOT to take in at once. That you did get a diagnosis is a good thing. Now, you can manage with your medications to help your body work with this new companion.

Do rest when you need it. To push beyond your comfort limit, can do more damage than you imagine. So, give in to your body's needs to take care of it.

While you and your doctor are working to get your medications stabilized, keep a journal of symptoms, fevers - temps, pain level. Take this to your doctor appt and go thru it with your doctor. Don't think anything happening is too insignificant to list. At this point, everything is important to go over.

Do give yourself time to grieve for the change in your world. You need to find out who this "new you" is, and how to make it work with your family and friends. Do keep up with friends. Even tho you are not able to do the "normal" things all the time, you need to keep up with them and how to do things so you are safe. If you have beach parties, see if you can do it late afternoon or evening. That way you are safe from the sun, and are still involved in "normal" things.

Try to keep as healthy diet as you can. You will find your energy level needs this. With all the "farmer's markets" around, it is not too hard to follow a healthy food plan. Some of the medications can alter your metabolism, so watch these and discuss with your doctor.

Stay safe from sun exposure. Safe hours are before 10 am and after 4 pm. Extreme sun exposure can trigger a massive flare, so your body needs you to follow this for now. I carried a heavy beach towel in my car to drape over the steering wheel and my arm protecting it from sun. I also tried to not be out and about during the prime hours of sun exposure.

Daniel Wallace, MD, has written a very good book on patient survival. It is titled "The Lupus Book". His goal is to help with the early diagnosis and treatment and how to understand what is going on in your world. Most public libraries have it on hand.
Sally
 

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Hi Kim, nice to meet you. Im newly diagnosed too, it hits you hard doesnt it? But Ive found this site a godsend. I noticed that you are a full time student, Im a University lecturer (also studying for a Msc) so I hope this snippet will help.
Use your student guide in terms of guidance for extension of deadlines and mitigating circumstances should you need them. Let your programme leader know from the offset how SLE affects you, what you can and cant do. Also use ALL the support your establishment has on offer; this will strenghen your case should you need extensions etc. Usually Uni's / colleges are very good at supporting students who become poorly, its there for that exact reason so use it.
Good luck, take care and I look forward to hearing more from you :)
 

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I don't have too much to add other to say that Sally had some really usefull advice. Not all of us Lupies have all the signs and symptoms of SLE so don't think that everything you read about it going to happen to you. Keep an open mind and try to just roll with the punches of this disease and you will do fine.

Welcome to the site and many to you!!
 

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Welcome and so nice to meet you.

I think you will find this forum a god send, especial being new to Lupus.

Sorry that you have to deal with this at a young age but your on the best meds now to get feeling better.

I can not give any better advice then Sally did. I remember her advice given to me when I was new and it was awesome.

One day at a time, deep breaths and you will do just fine. Join us in the chat room sometime.:wink2:
 

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Hi Kim, welcome to the site. The time after diagnosis can be tough. Keep posting and let us know how you are doing. Ask as many question as you like. It is a very friendly site.

Take care

Deb
 
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