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Discussion Starter #1
I'm a new member and have just been diagnosed with lupus, literally today. A bit in shock. Have had terrible symptoms for the last 7 months, joint pain in hands, feet and neck, rashes, burning skin, white hands, skin lesions, chronic fatigue. I first had an ANA test last July and tested positive twice at 1:640 - they repeated it because they thought I had a false positive because of a chest infection.

Don't know that much about lupus yet, other than it's an autoimmune disorder that affects people in different ways. I am to be started on Plaquenil in a couple of weeks - my rheumatologist has to write to my GP to inform them of the diagnosis first.
 

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Hello Ali and welcome :)

It is quite a shock to suddenly receive a diagnosis. Maybe a bit of a relief too when you have been searching for answers for some time.

In any case you can expect to go through quite a range emotions in the coming weeks and months.

You will gradually learn a lot about your disease. I would say that it is best not to go overboard reading anything and everything to begin with as you can just as easily find incorrect or out-of-date information as you can good info. The main site attached to this forum is a good source of general info as well as some of the main hospital sites. Be careful of any sites that have an underlying commercial objective.

I'm glad to hear that you are about to start plaquenil. It is an excellent med for most people and is your first line of defence against your disease. It is disease modifying and will help decrease the frequency and severity of any flares that you may have. Its only disadvantage is that it does take a while to start working fully (usually between 3-6 months, sometimes more). Some people experience some slight stomach issues when they first start it but they tend to disappear as your body gets used to it.

The people here are very welcoming and it's a great place for info and support.

Hope to speak more soon,
Katharine
 

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Hi Ali,

Welcome to the forum. It is nice to meet you.

Learn to listen to your body. Pushing it further to do something will only make you feel that much worse.
You also need to be careful about the sun. Stress is a big factor to us too. I know it is hard not to stress out though.

If you have questions you can post them on the board. There is also a chat room where you can go and talk on on one with members.

Take care,
Lyn
 

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Hi Ali, I would reiterate not to look at alot of the sites on the web and worry about them, they are pretty out of date and on my diagnosis of MCTD last Nov thought I would be in a box within five years!!! which I now know to be preposterous thank goodness!!:lol: It is a shock for this kind of diagnosis and it is really normal to search for reasons why etc etc and to go into a bit of denial etc.. this forum is a good source of info, kind, good advice from people who are dealing with a variety of issues daily with humour and humility. Take your time to take it all in and absorb the information, you are on good meds by the sound of it and that is such a good step to being more comfortable, my joints are still a bit of a problem after four months on plaquenil but know it can take up to a year for proper relief that creeps up on you often rather than being very instant.... so one day at a time and Welcome to the board XXX Claire XX
 

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:welcome: Alimonkey

The site is a wonderful place to learn about Lupus. Feel free to post any questions you have. The members are more than willing to share their knowledge, experience and support.

You might also want to join us in the chat room. It is a great way to meet some of the other members. The chat room also gives you a chance to get instant feedback on any Lupus related questions you might have. Hope to see you in there in the future.

Take care,
Lazylegs
 

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The Other Illinois Tammy
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Hi and welcome to the site. We are here for you in anyway we can. You will learn to adjust as you need to. There are many people here that can help you with your questions and fears. We have a chat room that you can get feedback instantly to your questions and concern or just to share things or vent. It has many reasons for being there and we use them all. I hope you are doing well and feeling well.
 

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One month

Its been 2 months since I heard those words.. 'You have Lupus' and month of being on meds. The emotional rollercoaster is almost as bad as how I felt when I didn't know what I had. The questions are endless and the answers are, usually, not what I want to hear. Even with an allied health professional background (thats med speak for Massage Therapist) is confusing and overwhelming. I just found this board and actually feel like maybe I'll get some 'real' answers.
Chin up! We are not alone!
 

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Discussion Starter #8
Have told a couple of people about my diagnosis now, they ask me questions I don't know the answers to! What does it mean is a hard one - I guess no-one can answer that as you just don't know how it's going to affect you. I can only tell people how I feel now, I'm pretty much taking each day as it comes. Today is a beautiful day but I can't go out as I just feel so rotten, and my skin hates the sun anyway. I'm not sleeping very well as I have such terrible pain in my hands and feet - they kind of feel like my flesh is trying to burst out from under my skin. The other night I lay awake for hours because of it. I've taken high dose over the counter pain killers but they don't touch the pain most days.
 

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Hi Ali

Welcome to the Forum. I thought you might find the following link helpful. Its one of the sticky threads at the top of the 'Just for Family, friends and Caregivers' Forum. It might help explain things to people when they ask :)

http://www.thelupussite.com/forum/showthread.php?t=67968

I hope you can get started on some treatment soon and also talk to your doctor about painkillers as well. Welcome again and I look forward to getting to know you

Take care for now
Joan:rose:
 

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elisabethm
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:welcome:Ali you have came to the right place as the rest of the others have said this is a really good site to be on.The chat room is the same getting to know others that are in the same situation as you are.Hope you keep in touch.Elisabeth
 

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Dear Ali,

You may feel awful now but there are some good treatments out there. Unfortunately some are a bit slow to benefit you and it can take time to find the right combination, but overall you can be optimistic.

It does sound as if you need some pain killers or muscle relaxants meanwhile to help control the symptoms. This is only a suggestion as I appreciate that many people do not like taking tablets, but I have to say I am grateful for them!

For many people a good night's sleep is a huge help. Some find Amitritylene helpful. It is an old style anti depressant but given at a much lower dose just to improve sleep quality.

Sun protection and where possible sun avoidance may well help you, it is worth learning about it, but as others have said don't overwhelm yourself at the moment.
We are all here for you.
x Lola
 
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