Glad I`m not alone..

[Skid]

My name is Sue am in my 50`s I`m new to this site and its good to know there are others out there in the same situation.I was diagnosed in may 2010 with SLE and sjorgrens and now have got osophegus reflux, (and I think lupus has affected my brain as I cant seem to spell properly anymore) It took 5 years of seeing so many consultants and docs and test to diagnose,They all make you feel like a hypochondriac but I am like many others you know your own body and know when somethings not right ,but I am lucky now to have a brilliant Rheumatologist who spotted it straight away.good to meet you all x

[Yols]

Hi!

It does seem a long journey when you look back sometimes but so glad you have a great rheumatologist now. It does help to get that diagnosis, as you begin to question your sanity in the end! x

[PoppyJaman]

Hello! Feeling and learning about other peoples experiences was one of the things that helped me most in my recovery. I was diagnosed in 2009.

[Jello]

Welcome Sue

Just come through 3 weeks of feeling awful. All blood results negative and it makes you wonder "why did i feel soooo bad"?

I have only been a member for a short time myself and i have come to realise that i am not a hypochondriac or going mad. Professor has decided to test my kidneys so at least he is now taking me seriously. I have had two years of umming and aarghing.

I do hope you find comments and blogs from others helpful.

Take care

Jill

[kb281 in reply to Jello]

Hi

I have just joined this site and new to Lupus UK.

I have had the same experience as you.My last test was negative and have waited 5 months to see the kidney doctor.My Rheumy was going to put me on tablets Hydrchloro... but didn't ,as he wants me to see this Kidney man.

Meanwhile I feel I have wasted my summer holidays AGAIN!

Feel rubbish and my memory is terrible lately.I work in a school and am worrying that my brain has forgotten how to work.I feel so daft sometimes.I can't retain any information. I forgot today that I spent £80 cash and thought I'd lost it only 10 mins after!I feel like I'm going mad!

It's good to know that we are not alone in feeling mad!It's aboout the same time for me funnily enough .I am 51.

I do sympathise with you and would love to chat more to you.

[Skid]

Thankyou all for taking the time to respond to my blog It`s good to know there is always someone to talk to.Hope everyone has a great Bank holiday, don`t forget pace yourselves and enjoy. Sue.

[Hidden]

Hi Sue/ it's great that you have a good Rheumatologist (I get brain fog too, took me three attempts to spell 'rheumatologist correctly!!!)

[kb281]

Hi Shelagh C

Now you mention this "Brain fog" that about sums me up.Is it common then.I get days where I am too tired to even speak.When I do I slur my words and feel stupid.Yes my spelling and typing have got so much worse.Very interesting.

Kb281

[Jello]

"Brain Fog" I wondered what to call it. I get this too and cannot speak properly, so conversations are a no no. My words come out backwards woo hoo!

Looks like we are all more alike then we initially thought?

Good weekend everyone

Jill

[kb281 in reply to Jello]

Hi Jill

Are you on medication ?does it help the " Brain Fog?"

I am not on any medication yet.he was going to start me on Hydrochloroquizne something like that but he decided to send me to the kidney man first and I have been waiting months GRRRR!!

My main problem is fatigue so I was hoping the tablets will boost my energy levels when he puts me on them!

Take care

karen (kb281)

[Jello in reply to kb281]

Karen,

Yes i am on Prednisolone, tried Hydro.... but my eyes were painful?

Just had to up the steroids as they tried to get me off of them then i had 3 flare ups. The last one lasted 3 weeks and felt so weak and exhausted felt like a 100 years old. Steroid now 10mg and 5mg alternate days and i am feeling good again yee pee.

Keep bugging them and hopefully it will sort its self out but i must admit that i still feel "weird" sometimes and confused. Luckily one of my closest friends has been diagnosed as well so we can phone each other and moan.

Take care Karen :0)

[Hidden]

Yes me too i thought it was age lol i have conversations, then half way thru i forget what im talking about, Good job i have understand friends

[Gloshette]

welcome Sue(skid) , am pretty new here too and brain fog made me feel I was going through the early stages of dimentia?sp Luckily Dr put me straight. I hope he got it right though............... lol

[kb281 in reply to Gloshette]

Hi Gloshette

I get exactly the same my memory is getting terrible quite worrying really.Are you on any medication ? does it help at all?

I feel so stupid sometimes I am a teaching assistant so have to be on the ball.Doesn't help much when I can't even string a sentence together sometimes!let alone spell it!

Best wishes

Karen (kb281)

[Gloshette in reply to kb281]

Hi Karen, Yes I'm on meds - kitchen cupboard dedicated to them! I treat my meds as my stabalizers, they keep me ticking over, yes I still get ups and down but the blood results 'generally' stay where I can deal with it (still too many Lo Hi;s for my liking though but stable, hi lo;s IYKWIM) and they don;t always represent how I was feeling at the time of being taken.

I have done my TA level 2 course but never been well enough to be able to hold down even a part time job since qualifying So well done you!!!!

You are NOT stupid - just a tad 'foggy' at times as I refer to how I am (that's my story and I'll stick to it )

Take care

[kb281 in reply to Gloshette]

hi Gloshette

What shame you haven't been able to work.I do feel very lucky that I have mild lupus so although struggled through the week and slept most of weekend can work at the moment.

I am an HLTA which was is a bit stressful and now I cover whole classes!Which can be dodgy when I forget what I was saying!Especially in year6!

Whats 1YKWIM stand for?? sorry it must be the fog!!!!

I am lucky I have an excuse now for being dozy!I get called Loopy Loo!It about sums me up!

Hope you had a good weekend.I managed to do abit of gardening-probably pay for it tomorrow!

Take care

Karen

[Gloshette in reply to kb281]

Hi Karen, IYKWIM = If You Know What I Mean

It fine, this short lingo is fine once you get the gist but if you don't know........ lets say I am forever asking my teen! hehe

Honestly, can't remember what we did over the w/end but yesterday the B/H, was spent cooking. Had a few of the husbands friends over and had a curry night...... needless to say today hasn't been overly productive lol

Hope you didn't end up suffering too badly from your gardening.

Chin up and keep plodding on.........

[Faye-Mc]

Hi I have brain fog too I thought I was losing it! I'm glad its not just me. I forget how to spell things and even wrote 'j' backwards recently! I found it quite alarming but also funny. I forget what I was about to say and I can't seem to retain new information. I have learned to write everything down now ansd I use the calendar in my phone for appointments etc and set a reminder so I won't forget. I also write lots of lists.

[Skid in reply to Faye-Mc]

Hi faye good little tip I use sticky notelets my house is covered in them only way I can function lately.my husband laughs when he comes in he says "oh I see you been decorating again ".I might just forget to write a note about cooking his dinner one of these days Ha! ha!.