[jacquip]

My name is Jacqui and I was diagnoised with SLE August 7th. My first recollection of there being a problem was May when I had lumps develop on my elbow....... Since then I have had 'the rash', fatigue and the join pain and headaches and Raynauds (problems with fingers and toes) and my eyes hurt. So far there is no organ involvement, but I know this can happen any time.

My biggest problem is fatigue and feeling emotional from time to time....... I also have a dull ache in my breast bone on the right side, but no problem when I breath and a funny sensation down my left leg. Also I have problems with my voice - from time to time it goes weak and my throat feels swollen - its all so weird and I'm not sure if any of this is Lupus linked or what.

I feel that every symptom that is associated with SLE I have - apart from problems with my organs.........

It is really good to read stories of what other people are going through and what they are doing to cope with this crazy illness........

 

[Katharine]

Hello Jacqui and welcome

I can imagine that it has been a bit of a shock to fall ill and suddenly find yourself diagnosed with SLE. This site is a wonderful place for support and advice whenever you feel you need it.

Have you been put on medication, if so what? It is very early days yet for your meds to have started working at all, so hopefully you will get a lot of relief from them. Many people do get back to an almost normal lifestyle once their meds kick in and hopefully you will be one of those. The meds should also help you reduce any chances of organ involvement.

A lot of people with lupus go about their daily lives with hardly a thought for their disease. This site is not representative of the lupus population as a whole as those who post here are usually "not yet diagnosed", "newly diagnosed" or the rarer people at the sicker end of the scale. It's important to keep that in mind and not be "scared" by some things that you read.

hugs to you and hope to speak soon,
Katharine

 

[jacquip]

Thanks for the email. It's such a blessing having somewhere when I can share how I'm feeling and hear how other people are managing their illness. Obviously there are some serious things that happen to alot of people and I'm truly praying that i'm suffering the worst of what lupus has to offer, but i'm prepared to get through this.

How you doing?

 

[cad]

Hi Jaqui,
Welcome to the site.
Sorry that things are not so good for you. Your symtoms sound so much like mine.
I really hope that you manage to get to a place where you are feeing a bit better, i hope that for myself too!!!

Its really good that you haev come here though it really is such a great resource, filled with really kind peolple who know so much about the illness.

I hope it helps you coming here.

Good Luck

Take Care

Cassie

 

[sjink]

Hello and welcome Jacqui

I am sure you will find the support and friendship here that makes Lupus copable.

I was diagnosed in August - but 8 years ago and my lupus has remained in the mild category (no organ involvement). The important thing is to keep on top of the medications (and knowledgeable about them) and be confident in your rheumy and GP I think. I do understand the fear about organ involvement, I get scared when the illness flares but if you keep in touch with all the medical people when you get new symptoms and attend clinics regularly then you are doing everything you can to look after yourself.

My symptoms seem very similar to yours, they tend to fluctuate with me, sometimes the headaches are worse, other times the joint pain. I am just coming out of a rather horrible flare - the result of a series of flu-like infections and colds and doing way way too much. Before that I was managing really well, but I let my self management slip, pushed myself a bit, got a little lax with regard to healthy diet and the flu did for me!

I am recently back on prednisilone so the fatigue has shifted away after 6 months of really struggling. I had tried to keep off it because of side effects but every now and again it is necessary for me.

It can be a bit of a roller coaster having SLE so having the support of this group is magic.

Well bedtime for me.
Take care
Sara
x

 

[LolaLola]

Hello Jaqui, Welcome here.
I hope you have an understanding family and friends.But this doesn't always happen. Diagnosis can be shock, but you will find everyone here very caring.
x Lola

 

[jacquip]

Hi guys,

Thanks for the posts. I am currently on 6 x Prednisolone and 2 x Plaquenil per day - I'm still waiting for them to work for me - I know it takes weeks/months for this to happen.

Yeah friends and family have been great.... I speak alot to my sister about how I'm feeling, but I do feel guilty about it though as she has MS and is confined to a wheelchair

I have been very fortunate with early diagnosis and treatment. Also I work in education so have currently been on a much needed 6 week break.....

I'm so glad I found this site

 

[LolaLola]

Jaqui, Glad you have some support. The steroids should help fairly quickly, although a word of warning, if you also have fibromyalgia(many of us do) those pains will not be helped by steroids. It is maybe something to ask about if you don't feel pain free. This is just my experience and that of others, but I hope it helps you.
x Lola