Evie

Yes i find flying tough. I tend to be more dizzy for a few days after the flight. Although these may seem somewhat obvious i may as well post some things that help me. 1) Drink powerade throughout the flight as it helps keep your electrolites up and avoid dehydration. 2) Move and flex your muscles to make sure blood is pumping (every 20 mins or so). 3) Take crisps (chips) for a quick source of salt. Some people also wear tights (sorry the propper word escapes me atm) to help with blood flow. Good luck Where are you going Suzanne? I should be flying to the gold coast soon ... i just avoid it as i dislike flying so much

Thanks for the advice Morgan The annoying thing is that it never seems to happen when i have a specialist appointment and by the time i get an appointment with my GP its gone. Are we able to test the levels at home? my mum is a nurse so she may be able to do it if eqiptment is available.

Good luck Lisa! Your dr seems to have researched very thoroughly for you. Let us know how it goes...

Oh hun, Im sorry to hear your health is playing up at such a vital time in your relationship. Have you shared your thoughts with your guy? I know in the past i have been paranoid that partners will leave me or i am too boring for them and its a horrible feeling. I found the best way to deal with it is to be open and honest about how you are feeling and make it clear that you dont want them to say "its ok" just to be nice... if they are struggiling with it then it may help for him to be able to voice his emotions without having to bring it up himself (as he may fear that it would come across as an attack). You say you are not doing much so im not sure if cutting down on activiites would help but maybe you could change activities. I am a huge fan of the movies heh. I get to go out but i get to sit down. Have you factored in that a child may take extra energy? I know when i am around children i get zapped so quickly even though i enjoy being around them. Good luck with it. I hope it works out for you. Congratulations on finding a sweet guy who you love

Thanks Morgan Most people dont understand what i mean when i explain and think its just the pain you normally get when you go to the gym but its so much more extreme and interfereing. I use to have it every day for a few years ... then it has slowly become less freqent... Its return just freaked me out a little. When i was diagnosed with OI i was hoping the treatment would take away those symptoms too but it does seem that CFS and OI can work seperately. Ive been told to exercise (not excessively) to help get rid of OI yet i dont seem to be able to exercise or i get CFS back. oh i forgot to add that my mother tends to know when its happening as my lips go blue so maybe there is something with the lack of oxygen? do you know how that works or what would cause it? Its not like i can stop feeling sick by taking deep breaths yet intuitively thats what i try to do.

Hello Mandy, Welcome! i hope we can be of help to you

Hi everyone, I have been improving quite well over the past few months so much so that i decided to go to the gym (5 mins on treadmill one day, 10 mins next, swim on third day). On the forth day (christmas day) my old most hated symptom returned ... exghasution and burning muscles. It was a main symptom when i was diagnosed with CFS. The best way to describe this feeling is it feels similar to when you quickly rub sand between your hands and it gets that hot/burning feeling ... but not hot like a oven burn .. more like a friction burn. The worst part about the pain is it makes me extremely irritated and not pleasent to be around. My head tends to throb and i just want to escape it. My bp seems to be fine at the time. I think its more CFS than OI. I want to get fit but i dont know how to get around this feeling. I cant push through it and keep exerciseing. Has anyone experienced this feeling or knows any tips how to handle it? the main way i can battle it is massage and eno's .... but they only help for a few hours

yes i too get a buzzing feeling ... it makes me so irritated and i find if i have coffee or stimulants my face and neck get really itchy/irritated. For my head i have found sometimes that drinking eno's helps take away the pressure and buzz in my head/body. Sounds strange i know.

You are all in my thoughts and prayers xo

Hi Lisa, Sorry i dont have any advice i just wanted to wish you the best with making such a stressful decision. I dont understand what the rush is either... it is a huge choice for you to make and you should feel like you are not pressured into it. Obviously if it was a life threatening predicament it would be a different story but it seems that what you are suffering is very disabiling but not life threatening at the moment?

sorry to hear you are feeling so horrible. This may sound obvious but have you tried warm tea with lemon and honey? i have found that can sothe my throat and ears. Also another non invasive way of helping with ears can be ear candles as they help release the pressure. I would check with a doctor though as you may have a ear infection and its best to try and get rid of those quickly.

How Exciting! thats such wonderful news. CONGRATULATIONS! what a beautiful baby boy too now you have a wedding to plan YAY hehe

Merry Christmas! Thank you so much for all your support and company this year. I wish you all a wonderful holiday season. A big thank you to Michelle for hosting the site too! xoxo

Its so good to know im not a complete freak! sorry to hear that we all have to be so fussy about the little things though. I wonder what it is about 65 that makes it such a important number heh. Have any doctors mentioned these symptoms to you? does anyone know why we radiate heat? I will look into the chillow. Ive been thinking how good it would be if something like that existed and now i find out it does!

Since i have moved into a house with airconditioning i have improved alot. I have worked out that if the tempreture is over 18 degrees celcius (aprox 65 F) i have a tough time falling into a deep sleep. Unfortunately that means that everyone else in my house has to freeze so i can sleep. I am pretty sure they believe me but sometimes i think they may think im just being a pain about it. They suggest i sleep without a doona (makes sense i know). But this does not help me. Even if i have no sheets on i still find it hard to get into a deep sleep if the room is over 18-20 degrees. I realise that 18 degrees is not even hot. Im not sure why my body is so fussy about temperature. My boyfriend tells me that i tend to radiate heat at nighttime, i dont sweat just get really hot. Does anyone else experience this?

Happy holidays to everyone too! I hope you have a good holiday season physcially and emotionally

Yes maybe you have had a underlying CFS when you were young. I was the same in high school, i use to slepe on the train to school and once i got home i slept till dinner time ate dinner then went back to bed. I thought it was just being in the final years of school and was normal... boy was i wrong! Obviously i am not a dr and i cant diagnose or anything, however it may be worth your while to go to a good CFS doc. ALthough the truth is that there is not a magic pill for CFS, they may just be able to look at your situation from a different perspective. Sorry to hear you are so fatigued. ... for me its the worst symptom of the lot... i hope it passes for you

Im so sorry to hear the sad news. I am praying for you and I hope that the operation goes well. Its good to hear your brother can get it done so soon. Let us know how it goes... xoxo

When my main symptom was CFS (chronic fatigue) i remember how tiring the little things were. I left the house once a week to go out to dinner with my family. Sometimes i could not even manage that. It was truely horrible. Shopping if really hard... lots of people/noise/stimulation ... especially around christmas time. I am not sure why it happens, you dont have CFS? sorry i dont have answers for you... just letting you know you are not alone in the experience

How did the breathing go? i hope it helped! I realise it will most likely take time to master. The word master made me laugh for some strange reason. I had this image of us all in karate outfits trying to become master breathers. ..... gosh im going loopy lol

aaah i hate that feeling! I use to use cough mixture to dope myself to sleep alot of the time... it was so bad for me but i was just so desperate for sleep. I hope the meds start working for you again Nina.... i know the feeling of laying in bed wanting to scream and swear because you are so cranky you cant get some sleep. Stillnox use to help me alot ... but i hear its dangerous to use long term

Amy, Sorry to hear you have been forced to make such tough decisions. It is really tough at first but its great to hear that other things are working out for you. I hope you feel better from not having to work and lower stress levels etc. I had to drop out of school 6 years ago and now i am about to go back full time. It can take time but hopefully your drs will be able to find ways to improve your situation. Best of luck xoxo

yeh congrats and good luck

I had mono and its what caused me to crash. I have never recoverd. I was treated for depression when i was struggling to get out of bed and the tests came back negative. 6 months later i crashed again and tests said that had had it as well as a previous infection. I dont know how long it takes for tests to come back postive or if you can have false negative tests but i think i originally had mono and depression as a result. Bronchitis and Mono give me the freaks ... i dread ever catching them again.

I knew a girl who got CFS who actually did have a elevator in her house, but unfortunately by the time she got really sick she had moved out. That would have been handy for her though heh. Dizzy girl sorry to hear you are finding it so tough atm. I completely understand what you mean about wanting people to witness it. At my old house we had a split level so it had a balcony, one day i fainted went to grab the rail but instead my body feel over the balcony while my feet stayed planted on the ground (thank goodness). I was having a fit and in my head i was thinking *INSERT SWEAR WORDS*. I was so terrified i would fall over and i could not even scream for help (even though nobody was home it would have felt better if i could). It makes you feel so vulerenable Another time i fainted while getting on a train and my foot slipped between the platform and the train. Lucky for me i fell into the train but it scared me enough that i droped out of college for that term as i felt to vulerenable travelling alone. I hope a apartment free's up for you soon! this may sound silly but can you crawl up the stairs? at least then its less likely you will fall backwards.