Evie

I went from reading for hours a day to not being able to read for 5 mins. This was when i was diagnosed with CFS. It does sound more like a CFS symptom but as others have stated the overlap. Sorry to hear you are going through this, if it helps any i am now able to read most of the time at a level similar to before i was sick. I still have bad days however, of course everyone is different so hopefully you will improve much faster than i did, just letting you know it can and does improve.

My hands and feet randomly go dark purple or blue. I think its due to poor circulation and a fairly common pots symptom.

Its great to hear you got a diagnosis! I hope the meds help you. Good luck

Thank you so much for your kind words and thoughts! Each time i go back into full time study i am sure that i will cope, yet i dont. This time i am doublely sure! I am very lucky that all my assesments are spaced out except for tbe final week but hopefully i can shuffle a exam and essay around. That makes a huge difference for me. I found my 10am class hard this morning and i think i will need some food/drink to get through it as its 2 hours. Officially you are not allowed to eat but i will ask for permission. Has anyone else had experience with them allowing (or not allowing) you to eat in a lecture? In the past i have drank tea in a tutorial when i was really shakey and they did not mind, i wish this was a big lecture hall but it isnt so others will be able to see me eat. After the 2 hour lecture i have another one and i was really happy that i lasted 3 hours! I actually was better in the second lecture where i feard that i would be really zonked. It seems offical that mornings are not for me heh. Next semester i will most likely be overseas and doing 4 subjects as its a visa requirement... At first i was really upset as i figure i would never cope with 4 subjects and i had better let the dream of studying overseas go .. but i decided i will at least try. Worst case senario is that i fail. Im trying to put on a brave face for my family as i dont want to worry them (they know that it may be tough for me though). I can cope with the fainting, i just cant cope with the brain fog or the extreme lethergy/muscle pain. I think i just needed somewhere to vent my hopes and fears, i hope i bring you good news at the end of the semester

Sorry that you are disappointed, It is so hard not to get hopes up and it hurts so much when it does not work out. *hugs* It must be very frustrating

Hi Everyone, I am enrolled in full time study this semester, this is the fourth time i have tried to do full time study in the past 5 years. I have not managed it previously but i am really determined to do it this time (i was determined previous times but i think i am stronger now). I was just wondering if there was any hints you could pass on? I am making sure all my work is spread out and i have notetakers and computers for exams. Its 9 hours of class a week (3 classes) and i am there for 4 hours monday, 4 hours wednesday and one hour thursday. I have to complete this semester full time to qualify for exchange second semester. I may have bit off more than i can chew this year but i feel like maybe i have to keep stretching myself as i have been getting stronger so there is no point doing less than i am capable of. I can handle the fainting i just hope my mind does not go all foggy, i will try to stay positive though. Any positive vibes or prayers would be greatly appreciated

Personally i have found that the muscles around my ribcage get tight causing me to breathe shallowly. I get massages of my ribcage (OUCH) and then suddenly i can breathe better! If you get massages maybe its worth a shot, however very few really know how to massage the rib cage.

Sorry that your friends dont understand, it can be really tough. I got CFS/POTS at 16 and unforunatley young people tend not to get it. Have your friends seen you faint? I found once friends saw me when i was bad they understood more. I mean it would be strange for them as personally they only saw me when i felt ok (or was putting on a brave face). Once they see how vulnerable we can be they tend to understand a lot more. It really hurts when people dont understand.... REALLY hurts (i had a big cry about it yesterday heh) Good luck with it! More people would use the showers wouldnt they? as long as the bath is cleaned (and hey hopefully not many people use it) then i dont see why it is so gross!

I was six weeks premie and born breach San, do you mind me asking if your twin is identical or not? that would be interesting if she was!

Hi I am sorry to hear that you are feeling down. It can be so confusing knowing what are symptoms of emotions and what are symptoms of our disorder. If you do choose to go on medication for anxiety then it can be a good idea to add some sort of therapy or councelling to that. I dont know what your feelings are about councelling but some can be of great help! (unoftunately not all are good, but good ones are out there!) Good luck with it, i hope your dr is able to advise you on the best path Let us know how it goes

Yeh your cognitive abilities get messed about. For me its a brain fog that sets in, i can sit at my computer for hours and not get one paragraph out as my brain decides to bascially go to sleep. It lasted 3 months over christmas last year and it makes studying really really tough. I have no advice sorry, just to let you know that you are not alone... The exercise thing tends to vary. I find i get whiped out before i can notice big results. Then if i have a good day i am able to exercise with much more energy, but that tends not to last long. Other people have noticed results though.

Thank you so much for your replies! This forum is a great resource. I have a lovely endocrynologist who is helping me, she sent me to a neurologist who diagnosed me with POTS. I dont have a cardiologist but i will ask about seeing one when i see her next. Im sure you all know what i mean about not wanting to sound like you are overreacting ... its just so hard not to sometimes as we all really want answers. Are cardiologists open to POTS type illnesses or will they mostly think its in my head? i realise that every dr is different it just seems that some specialities are more open than others. I walk at least 5 days a week and i have not thankfully been bedridden in the past two weeks so it shouldnt be deconditioning. It could be that i am extremely unfit though? I do try to go to the gym but last time i did three days and then ended up being really sick for a month... I want to get better and fitter but it scares me at the same time as i never know whats too much. (5mins can be too much)

Even taking into consideration i was cleaning my room? I suppose its not like i was going for a jog or something is it.... Im just really paranoid about sounding paranoid or overdramatic (gee i can sense a catch there, paranoid about being paranoid?) thanks for your reply Ernie!

I have had the fire feeling, and sharp pins and needles in my feet... its not the fun tickly kind its the burning ouch cant walk kind. I dont get it every day though. That must be tough! Its funny as i think i have gotten so use to being a bit numb that when i get a massage which allows circulation to improve i am so suprised by being able to feel my feet and hands... i have no idea if thats common in the general population or if its a pots thing.

Hi again, I have been trying to research what is 'normal' for bp and pulse. I am cleaning my room at the moment and i stood up and took my pressure and its 103/57 and the pulse is 129. I have never taken the pulse into consideration in my blood pressure. For a normal person would cleaning your room (picking things off the ground) lead to a pulse of 129. i have read that for adults over 100 is high. I suppose the truth is i feel hot and dizzy (i hate cleaning for this reason.. i find it tiring, but i dont know if that happens to everyone or not) but these days since my blood pressure is in normal ranges im never sure if i am just being a hypocondriac or if my high pulse is causing me to feel funny. I just wanted to check with you guys before i go whinging to a dr as i dont want them to think im exagerating my condition.

Its good to hear they got you a chair Sorry that your co-workers are being weird about it. Maybe you are misinterpreting thier looks? They could just be thinking why does she get a big chair? I mean if they dont know you have medical issues it would seem strange, but usually if they know then they are supportive. I get notetakers at university as well as extra time and computers in exams. I was a bit worried how the other students (my friends) would react but once you explain they are mostly very supportive. All in all we need these things to function the best we can, no need to feel guilty... hang in there

Gosh a test for CFS! I am excited and scared ... what happnes if that comes up negative TOO?! I always get so excited that they may find the cause and then i can know what to treat. I am sure i dont have to explain to all of you It just sounds really nutty to most people. Thanks so much for posting that up briarrose!

Yes i dream that i am fainting sometimes ... but its sort of worse in my dreams as it seems to last longer than in real life. I dont know if i am actually fainting in real life or not. I was worried that it meant i was overly obsessed with my health that it even invaided my dreams ... its kind of nice to know i am not the only one who dreams about fainting!

Yes i am sensitive to chemicals, i think i am getting better but when i smell them i still run away as a instinct. I am too scared to see if i react or not. At least you know that the smell goes away after a few weeks, good luck with it!

ok good to know. If it was a proper reading i would have been worried Thanks for clearing that up for me! Although i do wonder what happens to my heart when i move about, drs have never questioned it so i assume that means i dont have any signs that there would be trouble but when i exercise i do get quite faint so thought something could be going on. Have any of you done stress tests or anything like that?

I dont actually read my temp but i have noticed i tend to be quite hot usually instead of cold. We are all a little different and strange so it could very well be a pots thing.

Hi guys, I have been measuring my bp with a device my mum bought from the chemist. It is a mechanical reading. I thought i would see what happens if i walk around while taking my bp and it seems that i get strange readings like 100/33 last night and 83/25 just then (i also did some squats). Previously the lowest reading i have ever had was 60/40 and that was when i was about to faint. Is it possible to take blood pressure while walking? or would that be a faulty reading. Should i alert my dr when i see her next? In general my bp has been pretty good lately when sitting and standing. Thanks for any advice

I got one of the Hep B shots and had no major reaction so thats a huge relief. I did feel sick after it but the flu was going around so i am not sure if it was the flu or the shot. Will be getting meningitis one next week ... eek

The lowest mine has been measured as is 60/40 and that was before i fainted. Previously before medication i use to constantly be about 70/45 or 72/50. It was horrible. These days my blood pressure is usually normal yet i dont always feel 'better'. Its a bit annoying actually as i was hoping if i got my bp to be normal then i would feel normal.

Sorry to hear about your troubles with immunization, thanks for letting me know I am going to the dr on monday so i shall report back to let you all know how it goes *fingers crossed it goes ok*