[jackiejax]

hello to all.........have just been diagnosed with lupus (SLE)..... Have been rough for a while!! tired all the while,vey painfull joints etc,and swollen feet: and somedays just to tired to get up!! i work nights at same company as my hubby and am getting concerned that due to my condition i may not be able to carry on working,because as you all know the pain is so bad at times i may not be able to fulfill my duties...........so any advice would be appreciated.......

Regards
Jackie.

 

[Katharine]

Hello Jackie and welcome,

I'm sorry to hear what brings you here and that you had been feeling so rough for a while.

As you have just been diagnosed, have you started any medication yet?
The baseline treatment most people are put on is plaquenil which is generally extremely well tolerated and has few, if any, side effects. Its main "disadvantage" is that it takes rather a long time to kick in, often between 6 - 9 months.

There are also other med combinations that are commonly used and depending on how bad you are feeling and your symptoms there are plenty of options.

I really understand your fear about work. All I can say is hang in there and be optimistic. I was feeling exactly like you a while back and was so bad that I did end up having to stop work for a while (I had also had several years without treatment) but after about ten months of medication it all suddenly fell into place and I started to feel a whole lot better. Of course, that is only my experience and everyone is different, but it's just to say that at one stage I thought it would never end. I know that I will always have to be careful to pace myself and avoid stress but I am optimistic that now that the meds seem right and I have good follow up with a rheumy I will be able to keep going. I am extremely lucky in that my work is flexible and to start with I won't be doing a full time job.

Whether you will always be able to do the same job you do now, or whether you will have to adjust is something that you will only know with time. The best thing is to try and take things as they come and certainly not worry about them before. Also keep in mind that the people here on these boards are not representative of the whole lupus population as many who write here are newly diagnosed (and their treatment is not yet active), not yet diagnosed, or the rarer more severely affected people. Many people with lupus live very active lives and don't have the time to come and visit us here

It is very important to make sure your docs know exactly how any pain you have is affecting you. Don't suffer in silence. being uncomplaining has very few merits as getting someone to listen is a battle in itself at times.

I presume you are seeing a rheumatologist and that that is who diagnosed you?

bye for now,
Katharine

 

[helloos]

Hi there and welcome to the site.

I am sorry that you are feeling unwell and worried about work too. I understand and many others on here do too. I went from a full time 5 day work week, to 4 day work week and sometimes that is really hard to keep up with but I am still able too. I was very, very active before Lupus. I worked full time, came home cooked dinner, got kids ready for sports and then ran out the door to every night sporting events and on weekends too. Somehow I worked out at the gym at least 4x a week and even fit in a social life. My house was **** and span too !

But a lot of that has changed. I had to make the necessary adjustments to get rest. Rest is important and for the most part I now listen to my body - if I am tired and can't make it somewhere, I don't push, I lay down. I haven't worked out at all and I am hoping to get that back into my schedule.

So sometimes adjustments have to be made. Maybe start off with some adjustments outside of work, to slow down a bit and rest, and maybe you will be able to work a little better.

Hope you feel well soon.

 

[LolaLola]

Hello, Please try to downsize whatever you can. You won't regret it.
Try to rest when you can and eat well.
Treatment is good but can be slow to find the right mix of meds.
Welcome Here,
x Lola

 

[keebler]

Hi Jackie,

Welcome to the lupus site.

Please learn to listen to your body. I have learned the hard way. If you feel like you need to lay down and nap, go do it. Sometimes just sitting and not pushing your body to do more is helpful. Pushing yourself will just make matters worse.

What meds have you been put on? It takes awhile for some them to work.
Hang in there and take care,

:hug:
Lyn

 

[bugsy]

Hi Jackie :wavey:

I think all the other replies have given you the best advice, especially Keebler, listen to your body - it takes time for you to adjust. I hope your hubby is been supportive because at a time like this you need someone there just to reasure you that everything is going to be alright.

I really found that this website as helped me so much, having people around that really do understand what we are going thru for instance the tiredness is not like normal tiredness and it doesn't matter how much you try to explain to others how tired you are feeling they will say they understand and at times have felt like that them selves but nobody understand the feeling of tiredness that comes with lupus unless you have lupus and have experienced it.

It can be a lonely time but trust me you will never feel alone on this site as you are surrounded by friends that have gone thru what you are going thru and there is always someone there to offer you good advice and a shoulder to cry on if you need it.

So i guess all thats left to say is :welcome: to the lupus site.

Take care :hug: Jo :hug:

 

[lazylegs]

Hi Jackie,

Welcome.

Some days you just have to give up and do nothing. Try not to feel guilty about it and push yourself to do your normal tasks. When you push yourself it will take much longer to bounce back. Think of rest as a prescription.

Is it possible for you to take more breaks at work? I used to take a shorter lunch then take small breaks during the day using up the rest of the time. When that stopped working I cut my hours back. I started with a half day off during the week. Just going home and taking a nap made it possible for me to finish off the week.

Also on the weekends I rested as much as I could. Weekends were also for cooking meals for the week ahead. That way I didn't have to cook after work when I was already so fatigued. By trial and error you will find what works for you.

Take care,
Lazylegs