Evie

I am so glad it worked for you! That is wonderful news

These are the cfs criteria: cognitive dysfunction; recurrent sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain; headache of new pattern; unrefreshing sleep; and post exertional malaise lasting more than twenty-four hours 6 years ago i had all of them... now i only have cognitive dysfunction, muscle pain, headaches, unrefreshing sleep (but much better than it use to be) and exertional malaise which can last a few hours or a month. When i read things like this i realise how much i have improved! I also realise how far i have to go.. Personally i have found that CFS feels quite different to POTS/OI. When i have OI i tend to feel dizzy, spaced out and faint. With CFS i dont feel spaced out as much as exghasted (sp?) in pain and foggy in the head ... like i dont have the energy to think in the first place, i get kind of numb like i am permenantly on the verge of sleep. It can even come down to different ways of feeling nausea .... i use to constantly feel car sick now that my CFS is better i tend to only feel nauseas when i faint or in the mornigns when my blood pressure is low. I realise this does not make much sense, but as a paitient who has both i tend to be able to put my feelings into different catorgories of either CFS or POTS. I am by no means have a medical reasoning behind it though .. just my personal perspective. That article was great! thanks so much for copying that

I was comming online to post about this. .. does anyone else sometimes get to the state that they cry because they cant sleep? Last night i wanted to sleep so much but my body was hurting and i just could not get my mind to shut off. It seems to happen and i dont know if its the pain causing me to stay awake or being awake is causing extra pain.... i end up in fits of tears as i am so frustrated by it.. Is this normal in POTSY land?

I am I am! I am negative for cealiac too yet feel crappy if i eat gluten or dairy. I admit i do cheat a little bit and have milk in my tea and have soy sauce with noodles but i dont eat bread or drink milkshakes etc. I have found its good for keeping my weight down too. I have been breaking my diet lately and now i dont fit into many of my clothes I would love some food ideas! I was going to eat gluten free pizza last night but ended up not going to that resturant .. have you tried it? I dont want to pay for a pizza then find its gross like most gluten free substitutes are. Wow i just started every sentence with 'I' except this one. How self centerd of me

Yeh i felt bascially the same .. just a general overall feeling crappy. I dont think i got a fever from it though. My skin tends to hurt, for some strange reason when i take too much of any medication i get really irriated skin... no marks or anything it just hurts and gets greasy (i realise that sounds nutty). I tend to feel ok about 4 days after i stop taking it.. i hope you recover quickly! You dont just have a flu or something like that?

Hey, Melatonin makes me feel quite ill... i can take it once or twice but after that i get sick. I dont know what your reaction was exactly but just thought it was interesting.

Hi Melissa and welcome I am in my 2nd year of university and frankly my uni has no say what degree i get as long as i pass the requirements. Are they doing this as they acutally think it may be bad for your health to become a teacher? Or do they think you wont pass? It seems strange to me (i go to a huge public university though so it may be a completely different deal). Do they have the power to not let you finish? Yeh sitting may be a good idea! i have considerd teaching if i am unable to get my masters/phd so let me know if sitting is a possibililty

I got mine done in the chair and i was ok. I did freak the dentist out as i started to jerk about and cry as the room started spinning and i was getting sharp pins and needles in my hands even when he was not actually touching me. I dont know if it was just a reaction or i was having an anxiety attack. I thought it went quite well but my poor dentist was totally freaked out. However i recoverd quite well and i was really terrified of setting myself back. It is probably good advice to go to the hospital if you can ... but i would also suggest that you KNOW your dentist or surgen. I know mine and knew he tended not to be harsh... he rarely hurt and therefore i trusted that he would be 'softer' on me. I think we may be quite sensitive so if you have a rough surgeon it may hinder recovery. I dont mean to freak you out, i just thought it may be an idea to think about. Good luck

Yeh thats so true... i find myself going up and down on my toes to try and make the blood flow plus standing with my feet crossed and the foot thats behind kind of horizontal which keeps me steady. One doc put it down to bad posture but i think it actually helps me keep upright..

yeh i use to twitch (still do occasionally) .. i found magnesium suppliments helped as did enoz (ok i realise that sounds crazy but i sweat enoz helps with a lot of things including twitching and migranes) I would check with a dr though as it may not be pots

When i have told drs that i use to have problems with ANA and T cells they bascially said it was no big deal.. is this true? they made out like it was completely normal and could just be caused by a cold or something like that.

Years ago i had something wrong with ANA and T cells ... the dr said that was normal for paitients with CFS. I think my levels are normal now. I dont even really understand what it was all about other than my immune system.

I was originally stuck in bed with CFS and that was a really tough 4 years with feeling REALLY ill each day(i had undiagnosed POTS). Now i can run for buses and things like that, i still have tough months where i am in a fair amount of pain or times when im quite dizzy but i am still amazed when i can run for a bus. So basically i would say that it can get alot bettter.... compaired to being stuck in bed anyway. Btw i found out about a dr in sydney who aparantly did studies on POTS .. his name is Dr Whaley. I dont know anything about him other than that but maybe you could look him up if you were still interested in docs in sydney

Yeh i tell my dr's that i wake up sometimes feeling stoned ... not the best thing to say to docs but its the best way i can explain it ... i feel seperated from reality kind of, its really hard to connect with whats going on around me, especially people at times when i feel this way. I am always amazed at the stoners out there who choose to feel this way! heh

I am Australian I go to UNSW and am being nominated to Boston College. I have not lived alone since i got ill so im doing it to prove to myself i can be independent as well. Although i am getting stronger i still have bad months so i guess i just have to hope they dont stick around while i am away. I had a friend at oxford a few years back and i visited her, it was so great!

Haha, let us know if he replies! I want to do postgrad in history so i understand the need to really feel the manuscripts and be around the buzz of the best of the best (when they are not pretentious wanks anyway). Actually i am doing a semester abroad the second half of this year and some people were quite opposed to it due to my health. To tell you the truth i am scared stiff at times (when i am sick that is). I have actually thought of your situation Persephone when i am scared and the truth is my health is not as physically disabiling as yours (however my mind does do the fog thing like yours which makes studying hopeless at times) so i figure if you can do it despite the tough situation then i should be able to do it! wow your a inspiration I will find out in a few months if i am accepted *fingers crossed*

I dont think open university would compare to oxford though Oxford is a dream for so many people ....

That use to be my major problem but now i am on medication to help me sleep... I really didnt want to go down that track but in the end i found it has improved my overall health being able to sleep (somewhat deeply). I found that things like music/tv/computers stimulate my mind so if you can maybe stay away from them after about 10pm and see if that helps any. Sorry i realise you didnt ask for any advice ... i just went and gave it unsolicited didnt I. I am in australia so I am awake! maybe you should make some online aussie friends and play chess or something to make the time pass lol

Sorry for sidetracking the thread but i was wondering if any of you have low iodine? I did a bloodtest a few years back when i was much more ill and the results came back saying i had no iodine in my body. Does anyone else suffer from this or low iodine? There was also another mineral i have very low levels of but i cant find the darn bloodtest to find out what it was.

Wow, they sound like real jerks at oxford. Do they not believe that you need a wheelchair or something like that? it just seems to go against any basic feelings of humainty to force someone in a wheel chair to live up stairs. Are there actually rooms available to you on the ground floor? Its wonderful (and amazing) that you are still sticking it out, its hard when people are helping you let alone when the powers that be make it tougher. I hope your health picks back up as last time i read your post you seemed to be doing well. So lets hope this is the storm and it shall pass so you can have some peace for a while! xoxo

Oh my gosh i have been told that too! When i had CFS and would bascially be fighting to literally keep my eyes open i was told that "if you sleep too much it makes your tired". It use to hurt my feelings so much. At the time those comments really felt like i was being 'blamed' for being sick .. like i was doing things wrong to create the illness... I dont think people actually mean for it to sound like that, they just dont realise how hopeless these types of illnesses make us feel. Its funny as Australias top swimmer Ian Thorpe has recently come down with a unidentifiable illness and is missing the commonwealth games (Sports biggest event other than the olympics in australia). Another of our ex top swimmers made a comment saying how hopefully Ian will learn from this and be able to better prepare next time (or something along those lines). Ian got really cut by this remark and slammed the other swimmer for saying it and now lots of people are complaining about how Ian is overreacting and being a real twit about it all. However I can totally see how comments like that really hurt.... people just dont understand until they are on the recieving end! I dont think people would say to someone with cancer who is going through chemo "gee maybe if you had some fresh air you would be all better!" I am sorry that you are having to go through those sorts of comments! Hopefully one day people will understand ....

Hi, I just found this page and thought it may help people. I realise it may not fit in this thread exactly but it was the best fit i could make. It just discusses some supliments that can help with pain/fibromyalgia: http://aww.ninemsn.com.au/article.aspx?id=...e=naturalhealth Fibromyalgia is characterised by fatigue and pain in the tissues of the muscles, ligaments, and tendons. The exact cause isn't known, although contributing factors are thought to include infections, rheumatic diseases, nerve, hormonal or brain abnormalities, and psychological stress or trauma. While there is no cure, there is a lot you can do to help repair tissues and feel better: Magnesium Magnesium deficiency has been associated with muscle pain, so supplementation can be useful. Ginkgo bilboa According to a study published in The Journal of International Medical Research, taking 200mg of this herbal extract daily reduced pain in over 60 percent of fibromyalgia patients. Essential fatty acids Taking fish, flaxseed and/or evening primrose oil boosts production of anti-inflammatory prostaglandins. Ginger A study published in Medical Hypotheses found that taking 1000mg of powdered ginger daily reduced muscle pain. Massage, acupuncture, and regular physical exercise have all been shown to improve the health of patients with fibromyalgia. It is also worth considering the mind-body connection: hypnotherapy and related techniques allow patients to confront past traumas and negative emotions that may have triggered their pain. Visit www.atms.com.au to find a practitioner near you.

Yeh i also feel quite sick until about 10:30 am. If i was to get up at 4am it feels like my stomach is in my throat (strange feeling to explain). Does anyone else get sharp pains in their stomach/digestion/ovaries area? i get them about 50% of the time at different places in that general area. I also wake up feeling like i need to curl into a ball to stop nausea.

This is interesting as i use to get this but i dont anymore. I took magnesium for a while there and found it helped with my overall condition. Dont know if it helps with this aspect too or not.

Hi Suzanne, I am not sure of the cause just wanted to let you know you are not alone. Its a horrible feeling isnt it. I put it down to poor circulation but i put most things down to that. Hope someone else has better answers!