[LindaMo]

Hello

Thought I'd come on here as I'm feeling pretty down at the moment. I was diagnosed about 12 years ago, and had a rough couple of years, before going into about 10 years with few symptoms.

Over the past 6 months I've developed terrible joint pains, gained a lot of weight, find even the slightest thing makes me exhausted & am very low.

So - apart from wanting to appeal for a little mutual misery I do have a question.

I've had a chest infection for about 7 weeks now, and have an inhaler - could this be a symptom? Compramised immunity? Or am I just unlucky!!!

Thanks
Linda

 

[sjink]

Hi Linda

Sorry you are feeling down, this is the place to be. I am being propped up quite a lot by the lovely people here. I have accepted I am depressed and strangely that has helped me feel better.

A lot of what you describe sounds like our friend lupus. Lots of us here with the aches, the fatigue and the weight gain.

I get a lot of infections, chest and throat one usually although my teeth are also prime candidates. And sometimes it takes extra antibiotics to clear it, more than a 'normal" person would take. I have been told that lupus means I cannot fight infection as well as ordinary people and also that with the medication I take it can make me more susceptible to infection.

Important thing is to get treatment for the infection I think. And when you do make sure you take the whole course of antibiotics. If you still feel rough when you have finished those tell your GP and ask him what else you can do.

Hope being here cheers you up a bit.
Take each day at a time I think and don't look too far back or too far forward, enjoy the moments that bring enjoyment.

Love
Sara

 

[KarolH]

Hi Linda and welcome to the board.

I am brand new to Lupus so your a pro compared to me.

I just wanted to welcome you and let you know that I hope that chest infection gets under control soon so you can feel better.

Hope to get to know you better.

 

[LolaLola]

Hello Linda,
Welcome here. It would certainly help if the chest infection can be brought under control. Lupus is a sneaky illness, catching up with you like this.
I hope you will soon feel better.
x Lola

 

[LindaMo]

Thank you everyone - so glad of the support!

I did wonder if the lingering infection was a symptom - it's one I've never had before! I've had 2 courses of anti-biotics, and I'm still coughing & wheezing :-(

it's quite eye opening on here - I've been so lucky really to have had 10 years of minimal symptoms.

I do get aches & pains, and lots of blisters in my mouth, and am prone to fatigue - but mostly that's it!

At the moment I've being hit from all sides, and it's hard to acknowledge - and even harder to explain to people what it is, and how it makes me feel!

Hope you're all ok - I'm popping out for a quick drink with my best friend - her mission is to cheer me up!

hope to speak to you soon
Lxx

 

[Clare.T]

Welcome to the forum Linda but I am sorry your health is so poor and you are feeling down.

I am wondering what sort of specialist care you are getting these days and what medicines you are on for the lupus, because it sounds to me as if it isn't as well controlled as it might be.

Also have you seen your GP for a thorough general check up recently?
There are other conditions that could be responsible for some of your symptoms. Once we have a lupus diagnosis and especially when it is 'old', everything tends to be blamed on the lupus. You could be suffering some form of anemia, or thryoid or diabetes. Weight loss is more a feature of active lupus.

We do tend to get more infections especially if we are on immunosuppressants and often need "twice as long, twice as strong" treatment.
Lung involvement is very common with lupus and maybe you need some specialist evaluation at this stage - usually this would start with the rheumy following your case. Maybe it's not an infection or maybe it's something else as well as.

Remember that to your GP you are just one of thousands and we often have to be demanding to get answers. Let us know how you get on please and best of luck
Bye for now
Clare

 

[Katharine]

Hi there and welcome

I'm sure you have already thought of this but has your thyroid function been checked? That could explain most of your symptoms and certainly won't help you feel better with your lupus if it is not functioning correctly. The of course there are the others that Clare mentioned, anemia, diabetes...

Otherwise I have nothing really to add to what has been said. I hope you get this sorted soon. It sounds like you need to start getting some answers.

Katharine

 

[LindaMo]

Hello everyone.

Thanks for the messages - I actually went back to my doctors tonight, and I'm going for a thorough blood screen for everything tomorrow! Thyroid, anemia, the works!

I've never really had much in the way of treatment, as I was in remission for years - I take anti-inflammatories for my joints, and tend to rest when I need to - but the last few weeks have floored me!

My chest is wheezy & tight, and I feel breathless most of the time. I'm very low!

He's also signed me off work for a couple of weeks to rest!

Fingers crossed & thanks for the support - it means so much!

Lxx

 

[Surferboy]

Hi Linda, nice to read that you are going to be going for some much needed tests.

Did you say you were in remission for 10 years and you have just started to flair again? Or am I being thick again?

My fingers are also crossed for you

 

[LindaMo]

Hi Surferboy

well - I've had 10 years of mild symptoms - mainly joint pain/fatigue/mouth blisters.

10 years ago my symptoms were so severe I couldn't even turn a tap on by myself, getting in & out of the bath was almost impossible.

I was reading that you suffer from sweats? I have them quite badly - in fact they are a symptom I never lost. I feel permanently hot, my skin feels hot to touch & I get overheated very quickly. Night are terrible, I've been known to get up & strip the bed, turn the mattress & start again! I find a fan helps (I think somone else suggested that).

I'm finding the support on here great!

Lxx

 

[macfamily53]

A Great big welcome to the sight Linda.I am not sure if i could give advice on anything going on with you but before i was diagnosed with lupus like three years before i had the woresed infection of some kind that litterally lasted up to over a year.I am not sure what i would call it reallly but i could not breath very well and always sounded horse.They did the exam where they check to see how much air you are getting into your lungs and found i was only getting 26% of oxygen and im not kidding at all.I still do not knopw what the heck was going on but finally things got much better and i was sure glad of that as it is so uncomfortable to have your chest hurting when trying to sleep and get air.Well now that i went into my life :rotfl:i sure hope you do figure it all out and please do not give up on the doctors for sure.Please keep us updated on whats going on for you.Take care of yourself and get better real soon(((hugs))).

Tammy

 

[LindaMo]

Thanks Tammy - I can really relate to that breathlessnes - it's horrible!

I do find this site helpful, knowing I'm not completely alone - or going mad!!!

Take care
Lxx

 

[LolaLola]

Dear Linda, Hello!
No you are not mad, this is reality for us! Perhaps you could do with a good review of how your Lupus is controlled. Things have moved on a lot since your diagnosis. Many of us take a fair cocktail of things to get the best symptom control. It is great that your blood is being tested for other things.
Could I just warn you about sun avoidance, it really does help if you stay out of it, cover up, wear sunblock etc. If you have been fairly well for 10 years you have maybe not needed to do this very much. It could help you now though!
x Lola