Evie

Well i dont have children or extra stresses like that to try and juggle but i have found that i do get worse in certain areas. (mainly bush or farm areas) I use to live near the bush and i was constantly having respiotry problems. My parents sent me to school near the sea eventually to try and help this. Given that the building was really old I actually got worse. (i also caught glandular fever so of course that trigged my worsening too). But since i have moved into an apartment in the city i have recoverd quite alot. I know people say the city should be worse, but aparantly in Sydney alot of the pollution gets blown out to the suburbs and gets stuck between mountains. I think it a bit hit and miss with trying to work out these things. I hope you find some answers!

So have there been any good suggestions to help? I suppose if exercise makes me faint i dont see why sex would be any different (sorry if this is too private, feel free to PM if its a inappropriate question for open discussion)

heh yeh i remember the first time i was able to walk with my friends at the time. I was so so so excited inside yet they didnt really realise how much of a peak that was for me as they had not seen me when i was unable to walk. I did a little dance on the inside though hehe. thanks for the congratulations i was super proud of myself hehe.... today i got up at 12 though as i think i pushed myself too much. grrrrr. So here i was questioning my limits but it seemed i have found that boundary again heh. I went to the physio yesterday and she said im hypermobile and undertoned ... so my body is like one big tub of jelly and needs to find its centre again. When i was making myself walk again i had to really think about each movement and i think i 'taught' myself to use the wrong muscles to walk again. For a few years i had to really think about every movement. Now i am going to try and go back and reteach my body to use the right muscles so it can do the movements much more easily and hopefully that will limit pain and exaustation. Aparantly i use my back to hold me up when i should be using my hips. I focus on muscles too much instead of using the bones. She also made me promise that i would not push myself. hehe. Here i was thinking i dont do enough to make myself better and she was telling me that i push myself way too much and need to take it easier and slower. So thats a interesting new way to look at my situation. Has anyone else had similar things like physio or equivilents? I find when im well i do as much as i can (within reason ... there are things that are on my CANT DO LIST that i was questioning in my original post) .... yet now i am being told to still take it easy when im feeling ok. Thats so frustrating, you know how when you can finally do something you really want to do it? not rest. Has anyone found that taking it easy when feeling well prolongs thier feeling well? I have tried it before and found that i still crash in a few days. Hope your health picks up soon Dayna!

lthomas, thats very true too. Sorry to hear that you still have bad days. I know when i have had a super super day and feel completely normal (i may have one or two of these days a year) i go and i do EVERYTHING ... well i walk alot and just enjoying not having to stop and consider how i am feeling. Its great. So thats a good point, maybe when we really are feeling fine we will automatically slip out of that mentality and the fact that we are not slipping out of it just means we still need to be careful. This morning i was thinking about how good i was feeling and how maybe it was now just a matter of breaking the mental barrier and balancing what i do .... then of course i went into a shop that was hot and i was wobbiling all over the place. grrrr. oh well such is life i suppose I recoverd quicker than i usually do so thats positive.

Oh im so glad its helping you! With my suggestion i was worried it would sound like i was diminishing your emotions by saying "decorate it" heh ... i was not trying to diminish them at all of course and it sounds like you already had the plan! I wish i could do embroidery .... im jealous!

Thanks for so much your kind responses everyone! I was worried my post would be misinterpreted as my saying its ALL in your head. Which of course i dont think at all. Its nice to know i am not alone in this battle either Its so hard to know whats 'good' for you. My sepcialist was actually telling me it can be a bad idea to hang around with sick people as i guess you tend not to 'get on with it' as you may with healthy people. However when im out with my healthy friends and i have a turn they just whack me in a cab ... it doesnt really stop me having the bad turn *shrugs* Angela thanks for the suggestions! i have been trying to get a buddy to do some exercise with me (a buddy who understands that i may faint or cry hehe) I dont have worries with going to bed early its just that it tends not to make a difference about when i can get up in the morning. I know that may sound really strange and nearly everyone i talk to it about suggests going to bed early, but unfortunately it doesnt change the fact that in the morning i am at my worst and if i dont sleep through it it tends to drag out through the day. While if i sleep through it i can pretty much wake up at 11 and be dandy. However at the beginning of my illness i was sleeping all day and all night and it was a major battle to make myself stop sleeping in the day. I managed to do it, it was the hardest thing i have done in my life. Im sure i can do it again *puts mental boxing gloves on* Im going to the physio this afternoon for the first time. I hope they may be able to help with my posture and that will help with pain. When i am tired i dont have the energy to stand up strait so that causes more muscle pain. Im sure alot of you would have expereienced this. Im lucky that atm i think i am fairly strong. The upped fludrocortisone has helped alot. I even did a few star jumps this week! (only a few but still thats something i had on the CANT DO list) So i am pushing it .... yet i feel better for it... i think i may be stronger than i thought i was. Of course i have pushed it before and ended up on my arse. But maybe i am better now than i was then. So im going to give it a go i got up at 9:30 this morning!!! Its only the beginning of semester ... i usually crash in a few weeks ... i hope i can postpone that crash *sets the goal* Rita and Kristen we can work on safely 'pushing it' together! its horrible to question if you are helping yourself or actually helping yourself not recover. For those who think its bad that they push the limits .... im sure it has its positive sides! maybe if we somehow jumble all our mentalities together we would have a great balance

Ok i realise this may seem really stupid and it may not be your thing at all ... but maybe you could try and make the walker seem more 'fun' .. like add personal touches to it paint it/decorate it or do differnet things so it feels like its more a part of you instead of a symbol of illness. Just a thought. Feel free to ignore it

I was just wondering if anyone else is struggleing with knowing thier limitations or even exceeding what they previously thought was thier limitation? I am just so scared of pushing it and getting worse .. yet i fear that it is fear that is stopping me from getting better. Maybe i should explain a bit better. I suppose i feel that when dealing with a chronic illness you tend to need to develop new rules in your life. New boundaries of what you can and cannot do. I think we all seem to draw up a new rule book so as to best look after ourselves and to advoid any triggers or unessicary pain. A new framework to base your life on, a new mentality. After a while you dont even consider what you can and cant do, it just becomes a instant response of no or yes. At the beginning it took a while for me to come to terms with but after a while the "I am sick" mentality was firmly entrenched into my life. At the time it was quite nessicary. Has anyone found it hard to move out of this mentality once they start to recover? At the moment i am trying to work out how much of it is my bodies limitations and how much of it is my own mind enforcing the limitations. I was helping out at a conferene at uni in my holidays. They wanted a volunteer to be a runner with the microphone. Since the other volunteers in the room were middle aged they all looked at me as the obvious choice. There were alot of stairs involved in the running so i said sorry i had to leave at 3 so would not be there at the time they needed the runner. It was true i was rosterd to leave at three but i could have stayed as i had no other commitments. However i realised i had denied the job before i had even considerd that maybe i could do this ... maybe since i was feeling good that day i would be able to walk with the microphone from one person to the next. (maybe just maybe even up and down the stairs heh) It took me about 5mins of bending over and picking things up before i realised that its not likely that i would have been able to be the runner afterall. I was correct in my initial 'ruling out' of such action. Thats how i have basically survied the last two years. My health situation has basically stagnated (occasionally getting worse around periods of stress) however i have never pushed it (i did try skiiing and lasted half a day so spent the rest of the week studying inside while my friends continued snowboarding). However now my drs want me to slowly push these boundaries. I am supposed to wake up before 9 and to exercise (my mind freaks out at just the thought of this). I am doing all that they suggest (except i am sleeping in every 3rd day as its just too hard to get out of bed). Yet I still wonder how much of this battle is in my mind? I realise there is a very real physical side. Yet at the same time maybe by limiting my actions i am also limiting my recovery? Has anyone else struggled with this type of mental barrier?

Would biofeedback be similar to hyptnotism? (but with monitors) From reading that page it does sound a little similar. I found hypnotism has helped me with sleep trouble and has also helped me with some pain management. In hypnotism i have to get my mind to the state where the subcouncious is listening and then i think of the one part in my body that is not in pain... my bodies most comfortable part (it may be my ear lobe or some really random usually insignificant part)... and then I try to transfer that feeling onto a part of my body that may be in pain. I was suprised that it worked. However at the time i was not in a great deal of pain so im not sure how i will go if i break a leg or anything like that heh. Of course there is more detail to it. I have only just started to learn about it. Just thought it sounded familiar so i would let you know that it has helped me

oh conflicting emotions **** I hope the walker can help you! i dont know your whole health situation but is it possible that this could help you build muscle strength? (when you say walker i am assuming its like a moving walking frame? or is it more like a scooter?) heres to hoping that its positive side outweighs the negative side for you! .... hang in there

Oh this must be really annoying. I have never had a dr say out loud that its in my head. Sometimes i think they may be thinking it and they kind of brush you off by offering no suggestions or reasonings as to why i may be the way i am and they just wave me out the door. I have had the impression that some people in my family also think it could be in my head. (not people who see me every day ... just the ones who see me occasionally and look normal) What are the differences between anxiety symptoms and POTS/OI .... do people with anxiety faint? I know they can get heart palpitations and dizzy/nasuea etc. I know i had a nurse who was taking my blood. .. i warned her i was prone to fainting. .. she told me it was all in my head (in a nice way) ... i started to go dizzy after the third attempt to get a vien ... she asked if i was having a panic attack .... i told her i was fainting (i was already laying down) then my whole body started convulsing .... she didnt tell me it was in my head after that. However i hear that you can have such reactions from things like anxiety. It must be tough for drs to distinguish. It must be even worse for the people who actually do have anxiety.

oh yeh sorry i forgot about the US system. Its cheaper to go to a college in your state isnt it? Yet i hear that alot of people choose to go to college far away from home? Is that usually to go to better colleges or to get away from home? In Australia the vast majority tend to stay within thier state... or even within the same city.

Oh how annoying! Maybe go off it for a few days to see if its the melatonin or not? although if its like a normal crash then maybe its just that and has nothing to do with the melatonin .... i dont think you get withdrawl symptoms or anything from stopping melatonin so maybe its worth a try to see if thats the cause or not. *puts detective hat on* hehe hope you feel a bit better soon (in aus its really chilly atm ... its snowing in places that have not had snow ever before ... well at least not in the last hundred years or so .... under the doonas sounds like a mighty comfy place to be! well if it was not caused by illness it would be)

See Dayna... the consensus is that you are completely normal! hehe Not meanie at all! I was thinking of writting a book about all the nasty emotions that come along with illness. The jealousy, the bitterness, the feelings of isolation etc.... Even the feelings for those around you that may feel jealous of the extra attention a sick person may recieve. Its all so complicated. (i think about alot of things ... hopefully one day i will actually get around to it) I also was thinking of doing the psychology route. I did start psychology but i could not handle the hours (5 hours of class each week opposed to 3 for Humanities). sounds like a small difference but it adds up with multiple classes. I also struggle with accepting that psychology is scientific. Although i realise you have to learn all the principles from iside a field before you can tear them apart. I wanted to help young adults with illnesses as i felt that it was really tough being a teenager with a non lifethreatening illness. People tend not to aknowledge lifestyle-threatening illnesses. Or they do for a while but think after a few months you should 'get on with it' (easier said than done many times). Melissa, I think thats wonderful that you are going down the counseling or advocacy path. So many people just fall through the cracks with the support systems. I always wonder how people who dont have a supportive family or friendship network could survive this.

When i have tried melatonin its been good for a few days (on a very low dose or i dont wake up the next morning in time for class) however after a few days i tend to feel sick and irritable. Im not sure why melatonin causes this response in me but i have tried many times and each time its the same response after a few days. I think i am the odd one out though heh. Glad you are getting better results

*looks at her own deep blue/purple feet* mine get a blotchy appearance sometimes but i dont think i would call it dirty. I do get spots where it goes kind of whiteish .. its a strange colour .. kind of looks like the colour id imagine a dead body to look. There go my chances of being a foot/hand model heh. Its so annoying when our bodies happen to behave themselves while at the drs but as soon as you get home they go all nutty again. I suppose as long as it goes back to normal it should be ok however if your pain that you describe is new or getting worse then you should get it checked out if you feel you need to. Is the squeezing pain kind of like a burning squeezing pain?

Hi Jenn. When i was looking at exchange options i noticed that the university of Colorado had online learning options. I noticed they also had the option of 'self paced' here is a link http://www.colorado.edu/cewww/ I assume its a reputable uni (my uni tends to be fussy about who it will do exchange with or so we are told lol) so its online courses would also be reputable. Im not sure if you can get whole degrees from it or not. However it may be worth looking into! I know a few uni's in aus do correspondence work. I suppose thats not much use to anyone here though heh. Hope the link is of some help Linda i hope you get a response from your school I went to one of my first year coordinators yesterday to explain my situation and it turns out that he had sufferd from CFS too. I just thought i would mention that as sometimes you may be suprised where you can find people who really understand the feelings you are going through!

Oh thats wonderful! congratulations I want to do a PhD so its nice to know that dispite poor health you can do it! What is your PhD in? if you dont mind me asking.

Are POTS/NCS paitients more sensitive than most? I know with CFS that can be the case. I have seen people close to me go on and off some SSRI's and it was really tough for them for the first few weeks. They were on a higher does than you though. I myself went on and off one a few years back called cipramil (i dont know if it goes under a different name in the US). My symptoms were nowhere near as severe as yours yet it was still unpleasent. It helped my muscle pain for some time but thats about it. I took myself off them. All in all i think its your body. If you truely cant handle the symptoms then its your right to choose if you go off or stay on. From the sounds of things if the psychiatrist seems to think it will help if she is suggesting you stay on them despite the reaction. I think these reactions are quite common (maybe not to the same extent as you are suffering) so psychiatrists must be use to having to try and get thier paitients to stay on the meds for a few weeks and the side effects hopefully subside. There are other meds... maybe ask her why she chose that one over all the rest and what benifits it will have for you over others. (i mean if you are intollerant maybe there are others that will help you .... or it could just be the side effects and in a few weeks you will feel better) Good luck with it.

Hi Tracy! I am a new POTS(or something along those lines) paitient too. glad you found some answers for your health trouble

Oh sounds interesting.! My viens are really thin so it usually takes people at least 3 times to get anything in (i get anxiety from fearing the pain and that makes the blood run slower i hear ... so i suppose its a vicious cycle). Hmmm my drs didnt seem to want to do many tests. Like they said the tilt table usually takes months to get into and basically they know i have OI anyway. I could come back from tilt test negative and that would mean its possible i just had a good day, or i could come back positive and it wouldnt tell them anything new. But the whole blood measuring sounds important. If i dont improve i suppose i will bug them about that sort of stuff. Yet hopefully i will improve and it wont be nessicary thanks for being so paitient with me. There is so much information on this site im never sure whats relevant and whats not. It seems everyones situation is so different yet effects us in similar ways. Its quite interesting isnt it. This is making me want to become a dr! haha. I was just speaking to my mum (she is a nurse) and she use to measure my pulse and she said it tends to be irratic at times and miss beats occasionally etc. Would that be a sign of the T in pots?.... sorry i have no idea how to spell it and cant find the word on the message history at the bottom of the screen lol. The nurses at hospital however always had trouble counting the end beat as it was really faint yet the first beat was quite strong (i forget technical name... distolic or something like that?)

Oh good luck steph i hope you get the results you are wanting Eillyre the reason i know to advoid chlorine is because thats the first thing that use to make me faint. Even before i had CFS i use to faint at school when we did swimming. I thought it was exercised induced asthma. When i was 12 i was representing the school for swimming. At 13 i could not make it to the end of the pool i was just so weak. Now i think it was due to chlorine but at the time i just thought i was unfit (strange given i could play tennis and do dancing... i just didnt think it was serious... hindsight shows me it was a obvious clue). Im not sure why my dr told me to advoid fluride... it was a few years back now. He was looking at results of my liver and digestion tests so im not sure if that was anything to do with it. Cool, thanks for all the links melissa! i will start having a browse after i eat dinner. Btw i live in australia. Is anyone else from down under?

Hi guys! thanks for the kind welcome I use to use melatonin but for some reason after a few days or so id start to get stomach pains and feel really edgy. Like my skin would break out and i would feel irritated. I was on a really low dose as if i took a normal dose id be knocked out still the next morning and it would be impossible to wake me heh. I think my body is very sensitive as i get the edgy feeling when i use quite a few medications. Why must our bodies make it so complicated grrrr steph37822 is there any tests you need done to check your blood flow volume? Sounds like you had a great reaction to it, at least they finally found out what could have helped you at that time JaneEyre9 are there any tests to know what chemicals you are most sensitive to? I advoid chemicals and i know that chlorine is a major trigger for me and one of my drs told me to advoid fluroide. I try to advoid everything as much as i can but it would be nice to cut it down or to at least know what to really look out for Glad to hear that it has helped you! Wait did anyone actually mention melatonin? i just reread and i think i am confusing it with Eillyre mentioning Mestinon. Im pretty sleepy atm and have to run to uni so i will reread it when i get home later. I will do some research on what Mestinon is. My drs said they want to try me on the least medicinces possible to start with and then see how it goes. I guess i have to try and get my body to fix itself. ive been trying to exercise and get up early ... im buggerd after less than a week haha.

Hi Everyone! Its so nice to see so many people who appear to have similar experiences to myself (well its not nice that we all have to suffer but its somewhat comforting to know i am not alone). Also so many random symptoms we seem to share! like not being able to travel on aeroplanes and throat swells. I realise how loony these sorts of symptoms must sound to everyday people. I had been meaning to introduce myself but never got around to it. Hi my name is Eve. I was diagnosed with chronic fatigue 6 years ago (when i was 16) and last week was diagnosed with Othostatic Intolerance and given information on POTS and NSC. (the neurologist said it was post viral infection) I am a bit confused by what actual box i fit into if i do indeed fit into either. Basically if i wake up in the morning before 11ish my muscles all hurt and if i get up i usually cant manage to stand for more than a minute or so without fainting. However if i stay in my bed and slowly move my body the pain tends to go away and i am usually able to get up and move about. However i still occasionally randomly faint through the day or get dizzy/shaky. Does this sound familiar to anyone? Does anyone else mainly suffer of the morning? Over time i have improved. Originally i could not walk but now i am studying part time and most of the time can get around as long as i dont strain myself too much. The specialists (a neurologist and endocrinologist) have upped my flurdrocortisone dose and given me doxepin 3mg to help me sleep. I use to use stillnox but sleeping tablets are dangerous long term (however they got me through last semester). I also am being told to get up eariler to reset my body clock (sounds easy but is really tough for me to do). To do yoga or light exercise but not to an extent that i will 'pay for it' .... that balance is hard to find isnt it. I am also trying pain management through CBT and hypnosis. Has anyone else tried this? Also i was wondering if anyone wears medical bracelets when they are out in case you faint or have a bad turn? I get scared as sometimes i cant see where im going or walk very well so its been suggested i may want to get a bracelet. Just wondering what you actually have written on yours and if its any help. Sorry for the essay on myself and all the questions. Hope you are all having a good day

Thanks for your replies I think i will write a thread introducing myself and explain my symptoms and see what people thing. I assumed that the dr would have had my results in front of him and would not have pointed me in the dircetion of a POTS diagnosis if there was not some form of heart rate increase yet since i dont feel it and on further reading i think i may have NCS. Sorry im not sure what a blood pressure cuff is? Is that what they use to measure it? I was in hospital last week and the lowest they managed to measure my blood pressure at was 60/40 before i fainted. I know my blood pressure does drop when i stand. Yet in POTS your heart rate rises is that right? (I have been reading everything i can yet i am a little overwhealmed by it all) glad to hear that you recoverd from your chronic fatigue symptoms briarrose! you are right that CFS is a tough diagnosis to deal with. I was excited to get rid of that label heh. Although from the sounds of it Othostatic intolerence syndromes do not appear to have that much more recognition