In my head

[Helz Belz]

[font=Arial] Hey everyone! My name is Helen, I live in New Zealand and I'm 20 years old. I was diagnosed when I was 17 (though I suspect it occurred after glandular fever when I was 15).
I'm currently in my 3rd year of university, and it's been a looong road gettin there! I've had so much stress on (mum got cancer, my partner found out he had a complex aneurysm and has just had succesful brain surgery in australia) and I think my lupus is flaring again! Mouth sores, aches and pains, headaches, brain fog, hair falling out (dammit!!)
It's wierd tho. sometimes (esp. around exams) I get so stressed and I get such awful brain fog, and I wonder: are the symptoms 'all in my head'? does anyone else ever feel like this? Maybe I'm just lazy, and have got into a groove around exam time, etc. I know it sounds silly cos I get physical symptoms and my bloods go crazy, but sometimes it feels like, if I just forced myself to be normal, it would all go away. I really wanted to introduce myself because I've never spoken to someone else who has lupus, and I wanted to know am I crazy? or do other people with lupus sometimes feel like it could all be in their head?
Hope you are all keeping well.
Love Helen xx

[helloos]

Hi Helen.

Welcome to this site. I am 35 but wanted to respond to your post. Yes, I think we all feel this way. It is very hard to accept when it does happen. I think that a lot of people on here feel the same way and yes, do have the brain fog. When the stress comes, the flare comes, when the flare comes the brain fog comes.

I too wish I could force myself to get better. We have no control over the disease or the symptoms, but we do have control over what our treatment will be and how we will react to the symptoms and pain.

Sometimes just taking a step back and pampering yourself may help. When you are stressed or having brain fog, step away from the books, perhaps take a warm bath with some music and candles, or do something that will relax you, deep breathing, etc.

I do not practice my own advice ( just so you know) not always anyway. I do try to step back and do something relaxing.

I hope you feel better and glad that you decided to reach out and talk to people that understand.

[oxoshortieoxo]

hey helen,

I know exactly how you feel. Like, I have finals next week and ive been studying and stressing out like crazy. Im gettin ready for college next year, trying to keep a high grade point average etc.etc. and alot of my symptoms keep coming up.

I even asked some of my doctors and they said that it could all be stress. And with the hair loss .. that comes from stress whether you have lupus or not.

Im gonna tell you what I was told to do, it sounds kind of stupid but it sort of works. You close your eyes wishing that you were in a really quiet/calm place. Rub your finger or some other action and just do it for a few minutes. After your calm and everything you just go on with your day and next time youre stressed, rub your finger and it will be associated with those calm places.

Good luck with whatever you try to do .. im ALWAYS here if you need to talk!

xO dionna

[alobreto]

Hi, Helen! style_emoticons/<#EMO_DIR#>/wink.gif
I am a REALLY old lady--51, but I can say that what you relate is not unusual at all for human beings of any age who put up with symptoms that come and go the way they can with lupus.

As for the brain fog, it may not actually be the lupus itself that is causing that. Being distracted by all the other goings on, including the hair loss, and sometimes change in appearance-- those are the kinds of things that would make anyone not be able to concentrate as fully on the things they'd like to pay attention to. style_emoticons/<#EMO_DIR#>/doh.gif And unfortunately those kinds of stressors can make other lupus symptoms, including physical things like joint pain, worse than they'd be otherwise.

I liked the idea presented in the previous post! In fact, I'm going to give it a try myself!

I don't think that your symptoms are all in your head or that you're imagining anything. I think you should listen to your body and do a little pampering like that suggested in the earlier response to your post.

You deserve your own thoughtful care and attention, just the same as you'd do for a close friend.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[rwb200]

Not only do many people with Lupus at times wonder if it is in there heads but others do as well.
Many out here have been told this at some point and time by someone.
However it is very real. Everything you have described could be brought on by Stress.
Going to Doctors can be very stressful for some people. I would think that questioning yourself could make these feelings even worse.
Exam times can be very stressful, many people worry just before an exam even if they know some place in there heart there is no real reason.
The other items you mentioned have to add alot of unneeded stress to your life.
However we can not pick these things they pick us.

No it is not all in your head. Yes you are perfectly normal and it is even normal to question yourself and the circumstances you are in.
No forgetting about it will not make it better in fact it will probably make it worse.
Lupus has to be treated, it has to be monitored and watched all the time and treatment needs to start as soon as possible.

[Helz Belz]

style_emoticons/<#EMO_DIR#>/cloud9.gif Wow, warm fuzzies style_emoticons/<#EMO_DIR#>/smile.gif style_emoticons/<#EMO_DIR#>/Thanx.gif to everyone who replied! I gotta say two things really hit home with me: the first is finding a calm place- that sounds wonderful, it will probably help with my panic attacks as well, so thank you style_emoticons/<#EMO_DIR#>/smile.gif The other thing is that yes- I was told several times all my symptoms were 'in my head' and a result of exam stress. so I can see where I've made that subconscious link. I am being treated however, and despite going into a flare at the moment, my mind feels more at ease. So many GP's (i know this sounds mean, but all men) told me it wasn't as bad as i described. And you know what? It is. And it always will be, and now I can stop worrying 'is this actually that bad?' and think 'well it is, but i can deal with it, and get help for it'.
Sounds odd and stupid, but that's a huge burden from my mind somehow.
Your kindess (everyone on these message boards) astounds me, and the support is fantastic. What an amazing site, and what amazing people!
-What doesn't kill us truly makes us stronger!
style_emoticons/<#EMO_DIR#>/cloud9.gif love to you all, Helen x

[Marika]

Hi Helen, spoke to u on the chat the other day..u sounded a perfectly normal lupie person to me style_emoticons/<#EMO_DIR#>/smile.gif it's not in your head ...believe me, but stress is awful . the other day onthe chat i was telling them how i once had to go home from shopping down town to finish my geography homework...i left school about 36 years ago style_emoticons/<#EMO_DIR#>/crying.gif i was just confused and full of brain fog.....i can laugh now but at the time it scared me...
hope to talk to u on chat again soon
Love Marika

[flower]

<div class='quotetop'>QUOTE(Helz Belz @ May 23 2006, 01:09 PM) Quoted post</div><div class='quotemain'>
[font=Arial] Hey everyone! My name is Helen, I live in New Zealand and I'm 20 years old. I was diagnosed when I was 17 (though I suspect it occurred after glandular fever when I was 15).
I'm currently in my 3rd year of university, and it's been a looong road gettin there! I've had so much stress on (mum got cancer, my partner found out he had a complex aneurysm and has just had succesful brain surgery in australia) and I think my lupus is flaring again! Mouth sores, aches and pains, headaches, brain fog, hair falling out (dammit!!)
It's wierd tho. sometimes (esp. around exams) I get so stressed and I get such awful brain fog, and I wonder: are the symptoms 'all in my head'? does anyone else ever feel like this? Maybe I'm just lazy, and have got into a groove around exam time, etc. I know it sounds silly cos I get physical symptoms and my bloods go crazy, but sometimes it feels like, if I just forced myself to be normal, it would all go away. I really wanted to introduce myself because I've never spoken to someone else who has lupus, and I wanted to know am I crazy? or do other people with lupus sometimes feel like it could all be in their head?
Hope you are all keeping well.
Love Helen xx
[/b][/quote]


Hi, I'm from Gloucestershire , England - sorry to hear your not feeling too good, with the extra stain of family being poorly I reacon it probable puts a strain on your condition. I too find it hard to decide whether if my symptoms are the Lupus playing up or I just blame everything that goes wrong with my body and how I feel on the Lupus instead of investigating whether there might be another problem. I think you are brave going to University, keep going, I bet your family are realy proud of you, I wished I was brainy enough to go to university and take all that information in that is thrown at you. I can't remember names and phone numbers, I blame that on the Lupus and having kids. I never thought of Glandular Fever as being a trigger as I had that when I was 16 but I was diagnosed with Lupus initially when I was 24, it started with discoid and then later developed into systemic. Never mind we all have a cross to bare and is just one of mine. My Dad has lung cancer so I am supporting him through it as much as I can, even though I know there is nothing that can be done, I just don't tell him that as there is always hope. I have had a bad time since last September but am coming out the other side now. But I have had other stresses concerning family members that need to be placed in an asylum (and thats being kind) plus sorting the children out with their education and helping sort problems out with my husband's business (family again trying to rip us off) and then their is my own business. I find that working for yourself you are too busy worrying about the work that I find myself forgetting about my health problem, but when it is playing up it becomes a battle of the wills, me against Lupus and I do insist on winning. By the way I've given up on my hair aswell, but I do find it funny when I show a photo of myself taken 8 years ago to someone I've only known a couple of years they just don't believe that it is me. Yes I did have long thick hair, size 12 but now I look alot older than I am, only concerlation is that I'm not wrinkly and I do know of people who are healthy and have plenty of wrinkle, too much sun perhaps, one thing we are not aloud to have.

nice to meet you and hope we talk again soon Nikki style_emoticons/<#EMO_DIR#>/hyper.gif

[ASmallReminder]

You sound just like me, my brain just doesn't want to function anymore. I can never concentrate, and when I do I just forget anyway. I have days that I've sat in my car without knowing how to turn it on. I wonder sometimes if it's all just made up in my mind and I don't realize it. But the sicker and sicker I get the worse and worse my mind seems to become. It's terrible and most of all flat out depressing, but what can any of us do but just sit back and take it as it comes. style_emoticons/<#EMO_DIR#>/sad.gif

You're definatly not alone on this one <3