So what happens next: Ok so now What's next ? What... - LUPUS UK

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So what happens next

Lilrosie1 profile image
13 Replies

Ok so now What's next ? What test are next? I don't want drugs ir medications, what test are next? What shoukd I expect?

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Lilrosie1 profile image
Lilrosie1
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13 Replies
AgedCrone profile image
AgedCrone

Bit confused!

If you don't want drugs or medication , ...why bother with tests?

Tests are to decide what will help you. If you already had some tests ..what makes you think you need more?

If the tests showed nothing you will just continue as you are......You don't say why you had tests?

Hope you get sorted soon.

Lilrosie1 profile image
Lilrosie1 in reply to AgedCrone

I just asked what kind of test they do next who gives a dam if I chose not to tIe all kinds of pills if most didn't have a reaction I wouldn't give a dam.

AgedCrone profile image
AgedCrone in reply to Lilrosie1

I still don't understand.

Why did you have tests in the first place?

As you say, I'm sure if you don't want to take any drugs nobody make you.

After all, you will be the one who decides if you need help with whatever you had tests for.

Many of us here have been taking drugs that have helped us for years.

Why don't you speak to your doctors to see what they advise?

Lilrosie1 profile image
Lilrosie1 in reply to AgedCrone

For other diseases besides lupus and Idk why I did I really dint give a dam anymore anymore whatever happens happens I got nofhing to lose I already lost it all and no we dont always have a choice of your kid wants u checked are you gonna tell them no?

AgedCrone profile image
AgedCrone in reply to Lilrosie1

It's your life Lilrosie & if your children care enough to want you to get help by having a few tests......you are a lucky lady. Some of us have to deal with our health problems on our own.

I bet if one of your children needed tests you'd be right there persuading them to have them!

But if you don't feel you want the tests right now SAY SO quietly & calmly, but also say you will have the tests when you feel ready.

After all you might find there is a drug to help you.....I waited a long time to get the right medication & often felt like giving up.

But I'm really glad I didn't as I have a much better life now.

Think about it Lilrosie!

Lilrosie1 profile image
Lilrosie1 in reply to AgedCrone

That's where I am at in life just want to give up

To much on my plate

AgedCrone profile image
AgedCrone in reply to Lilrosie1

Can you talk to your children & explain everything is just too much at the moment? Or do you have a friend who can help you take a step back & see what you can do to cope with everything?

I know when I was being diagnosed I felt completely helpless & it did help to talk things over & get another view of what was happening.

Please don't just give up....do you have a Rheumatology nurse? They are usually very helpful in explaining what tests are for & what benefit you would get if you have them. It does take time & if you are in pain whilst you are waiting it is very difficult to keep things in perspective.

Do talk to somebody as it's possible without some treatment you will only feel worse.

Good Luck Lilrosie.

Lilrosie1 profile image
Lilrosie1 in reply to AgedCrone

I have absolutely no one at all. I'm all by myself and no one really cares family and all

AgedCrone profile image
AgedCrone in reply to Lilrosie1

Try phoning the rheumatology/ Lupus Help line, I'm sure they will be able advise you.

Family will only put up with so much. If you tell them you are feeling bad & then won't see anybody to help you, what can they do?

Go on- call that helpline.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Lilrosie1 ,

Do you currently have a confirmed diagnosis of lupus? Are they now testing you for other things?

I'm sorry to hear that you feel you do not currently have any support from friends/family. Are you able to speak with your GP about your current low mood to see what additional support they may be able to offer? You may find a referral to counselling or psychotherapy helpful?

Depression is common in lupus and can be the result of being diagnosed with a chronic, painful condition but can also be caused by the lupus itself. You can learn more about depression in lupus and support services that are available in our leaflet here - lupusuk.org.uk/lupus-and-de...

Lilrosie1 profile image
Lilrosie1 in reply to Paul_Howard

Yes I've got my results in positive ANA + DS DNA

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Lilrosie1

Hi Lilrosie1 ,

You can read more about these tests at lupusuk.org.uk/wp-content/u...

Lilrosie1 profile image
Lilrosie1 in reply to Paul_Howard

My lips is now swollen looks like I got into a fight

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