hayley

im so happy for you.It has actually cheered me up reading your post. I am also starting college tomorow.Very scared as im not sure how i will cope.My walking stick has become a permanent fixture lately.I am only going for three and half hours a week.Are you going full time. keep going and never give up. take care. h x

hey everyone, sorry I havent been on for ages Ive havent been well.Basically Ive started taking an antidepressant -sertaline.It evened out my moods which im thankful for but I was having trouble walking and twitching so my doc took me off it.I am now in the stages of coming off it and am back to square one.Still fainting and feeling very bad.Ive tried so many antidepressants to treat my depression over the years but I always come off worse so Im giving up on them now. Oh and still having neck problems, my speech goes funny when i move it certain ways and its still swollen. I also had a bad episode at work the otherday.It was really bad.I felt so ill.They usually last about 20 mins then go but this one went on for about two hours and it frightned me.I had to shut down the checkout and have a long break.Luckily my boss was fine about it.Im scared im going to have another one at work as im going work today.Anyway just wanted to update you. I just wanted to ask if anyone has any other ideas on how to treat depression without antidepressants. thanks hayley.x

thankyou for replying.I might bring it up with my doctor next time i see him. thanks h x

hi, i have developed brown patches on my skin.It started off with one now i have about 4.I have one on my chest,one on my thigh, one on my eyelid and one on my back. I just wondered if anyone else has this and what might be causing it. thanks hx

thankyou for replying. I spoke to my boss and said that im struggling and he said i can have breaks instead of working right through the full four hours.Im also changing the day that i was working so that my boss cant keep an eye on me. I am on income support so i can only earn ?20 a week. i am not working for the money.I went back to work to feel like i had a purpose and was doing something.I was going to do volunteer work but thought i may aswell earn ?20 a week doing four hours. i cannot manage to do anymore than this as i am already struggling due to feeling ill all the time and in constatnt pain with EDs. I wanted to go back to work as my boss is so supportive and ive never had a nice boss before so i thought that it would be easier to go back there rather than find another job. Maybe i should have gone down the volunteer route first. I also need to stnad up for myself when people ask me to lift things and i cant. Any advice on what to say. h x

hey Persephone, glad you are going to oxford.hope it all works out for you and your family. best wishes.Sorry i dont know what else to say as everyone has said it. take care hx

hey thanks for replying. I agree i do need to be more assertive but i hate making a fuss about anything i would just prefer to blend into the background. im going to see my boss today to have a chat. Persephone, I was working in customer service at a DIY store but then changed to the checkout.Thinking it would be less stressful but i was wrong. I did office work ages ago and it put me off for life i hate it.Plus my concentration is rubbish. sorry i havent been in contact ive been trying to get on with things the best i can. I have signed up to do a embroidery course for 3 1/2 hours a week as that is something i love doing.Ideally i would love to work from home making handmade crafts as i can have breaks when i want and do things at my own pace. One day my dream will come true.But for now i have a job to sort out. bye take care. hx

hello, sorry i need your advice again.Well i am back at work for four hours a week and im struggling. I work in a DIY shop on the checkouts and its so stressful. Im in alot of pain with my wrists and hips and i also feel so ill and then i lose my coordination, get shaky,start twitching and my concentration goes.Thats only after two hours work.I just cant handle it. I told my boss i can not lift things but then people keep asking me to lift things luckily ive got out of it but im to scared to say that i cant lift because people can be funny with you and i dont want to be thought of as lazy. I think people are sarting to think im stupid because my mind goes whoosy and i talk a load of rubbish and cant remember much.Im struggling help. I thought i could handle it,but i guess being at home is alot different from working. sorry for the rambling maybe im just abit sensitive as i cant ahndle customers moaning at me when i feel ill. hope this makes sense. take care everyone hope your all doing ok. h x.

im glad you had a good doctor experience. Do endocrinologists test all your hormones? sorry for the stupid question. h x

im having a similar thing lately.My blood pressure goes up but my pulse is 58.It used to be high but now it is low. MJ im sorry you are struggling hope your feeling better soon. h x

i agree with you that there is no support.Who do we turn to if we are ill and we dont get on with our GP.I saw him for the test results and i have to go again in six months time.I wasn't given any medications.But i dont really want them anyway because of the side effects. Ive got to carry on as i am. Exercise and drink lots. Are you on any medications? take care hx

yep im basically the same as you.Although i do have another appointment in january. Did you only have one appointment before you were discharged. take care hx

hello again, i also have EDs 3.I ve had extreme exhaustion all my life .Im 21 and trying to fight POTS is a constant battle but im going to win.I guess i push myself to hard.I also suffer with the daily symptoms that you describe.And also episodes as i call them where my blood pressure shoots up and drives me crazy. i hope you find some answers and it all goes well. take care. h x

hi, i have had the tests in the national hospital under prof mathias. Like you i was very scared after having such bad experiences with doctors. As soon as i got there a had a brain MRI scan. Tilt table test including breathing tests.sorry cant remember what its called. EEG 24 hour blood pressure monitor Another tilt table test to take blood for catechlomines. i think thats it.They are all very lovely there.I found it a good hospital experience. It took two months for my results come back and then i had to go back in for a clonidine test .Hopefully you wont have to have that. The waiting is the hardest. I think the antidepressants can interfere with the tests but i am not sure. maybe someone else can advise you on that. I was also scared they would send me to a phychiratrist.They actually did send me to a cognitive behavioural therapist who was lovely.I got sent to him to help me cope with my symptoms but i didnt have to see him again.The funny thing was i wanted to go back to see him as he was so lovely. . Have you been diagnosed with POTS? take care and dont worry. h x

thankyou for replying. ive tried most antidepressants.prozac,seroxat, citralpram all turned me into someone i was not.They made my depression worse. I did try sertraline and got on well with that. If i was on a low dose though would it still help my moods aswell as pots symptoms.? thanks h x

hey, i just thought i would tell you some good news.I went to work yesterday for four hours.Im so proud of myself. The problem is i'm paying for it now with my joints and pain. Especially my hips.I using my stick to walk round the house today. Maybe i should get some super glue and glue them in the right place as they are so wobbly. I also wanted to ask advice again.Well i just brought a bp monitor and when i have my episodes my bp goes to 148/101 hr 106 and when i was ill last night after work it was 96/61 hr 57. Any ideas on anything that can even out blood pressure because im really struggling. Also im thinking about going back on antidepressants as my moods are so bad .Im' worried that they will make me worse though. Ive read this can also even out the autonomic nervous system.Am i correct. any advice please. thankyou. hx take care everyone.

thinking of you. best wishes. hxx

hey,how did your ultrasound go. h x

hi, maybe you have pulled a muscle or something from sleeping on a hard floor.. hope you find some answers. take care. hx

hi,sorry your having problems. i had high builirubin about a year ago and was in awful lot of pain.The doctor thought i had gallstones but nothing showed up on an ultrasound.I still suffer with the pain but it has moved around my rib area now.sorry im not much help.hope all goes well tommorrow. take care h x

thankyou for replying. i dont know alot about EDS as most of the stuff ive read i dont understand. I have been having physiotherapy but stopped it for a while but i am now going back.I am also going back to see my rhemolotogist as i was just taking paracetomal for the pain but it doesn't work. can i ask another quick question,hope im not annoying anyone by asking to many questions. how can you suddenly start getting pain in a joint that wasnt painful before,is it due to overuse. i think i better read some more. thanks. h x

hi. i have eds 3 and it only really came out when i hit puberty.Just lately i am in constant pain with my wrists.I was wondering if it can spread to other joints as i never had problems witht them before and can it get worse as you get older. thankyou. h x

thanks for replying.have you found anything that helps with the moods.

pre menstral tension or bad moods before your periods. take care h x

anyone.