ladyt

Symtoms has long as i remeber. Got gradually worse from my teens and up. At 20 even worse, and in 98 i got my diagnose. 2001 i think was my first bedbound spell. So been a few years. I am now 35, and still here

Hi Lots of difrent things at difrent times. But starting on allergypills a year ago made the biggest difrens for me. But there are also lots of other things; Like eating the rigth food often and in small portions (often the rigth food is a lilte sugar) Acsepting the days i have to stay in bed or in the sofa all day doing nothing. Rest alot My wheelchairs My showerchair findg out that a low dose midorin was a lot better than a high (after over 8 years, almost 9) Painmeds to gett better sleep Giving up trying to exserise, and then lookng at all movment as that, exersise. Doing micro exersis when abel, and remeber to avoid it when only makes me worse. Staying away from food making me sicker. My elbed, having my head elevaited trhoug the nigth. terapipool (sadly i only gett a few sessions a year, but they are worth gold)I dont swim or move around alot, but ust flaoting in the warm wather is wounderfull. Putting my legs up when ever i can Using a hartrate watch (give me better understanding and know how, like i dont feel when my hart goes faster) Trying to acsept that i have bad periods, like the winthers (the cold is bad for me), and this year also spring and summer (cos its been cold) And that my good days so fare is few and never last all day. Knowing that if i never gett better i still can have a nice life, ust a lilte difrent.

Sorry to hear u are getting worse. And that your docs are well docs... I have had this in one form all my life. When i got my diagnose back in 98 I had gradually gotten worse for a few years. But still i was abel to be fairly active and did more than most people. During the year of 99 I reclined even more. I started the year exerising like i always did, but during the year my body ust whent down in shape and stamina, even though i kept at it.And i have never been abel to do normal exersis since that year. Ater that i have had many ups and downs. My ups is not healty or functiong all day (even on a good day), but better that the downs. I have found ways to deal whit the difrent symtoms and weir body reactions. And i am searching for new and better ways. i wish i new why i have pots ( i have so many other syptoms) and got some real help from the docs. It is very hard when slowly getting worse. And when one dont understand why. But even whit in genarly getting worse, i have had better days. I remeber them the best, even though they last the shortest. The only comort i can bring u, is u are not alone. And as u write in your reply, that seems to help u a lilte..

Hi Brynne being young and dealing whit this is not easy. I have had pots always i think, but was diagnosed at 22. I was abel to go to shcool and even got a bacholr degree. But it was very hard, and had no idee about what was wrong whit me. The doc said it was all in my head. So i was told to pay no attension too my body from a very young age. So thats what i did, and i botled up my feelings too. During my last 7 years i have learned gradualy how to really deal whit my feelings and situations. Getting to griev is important. I had a mnth about two years ago. I cryed and cryed, and dived down into my feelings. And now i try to have a good cry when needed, though crying doesnt really come that easy for me. Watching a sad movie can do the trick. I also write it down, i seldom keep it though, i burn it up or tear it up. I ust gett it out, as angry, childish, selfpitty etc as a need. i dont really talk about it whit friends. I have on that understands my limitations (as well as she can), and thats comforting. I have tryed to learn difrent things over the years. Like knitting. I miss my knitting (but i am having a year break cos of inflamations in my arms). Also embroiding and other small stuff. I whant to do some scarpbooking too. they main thing is to find somthing u like and are abel to do alilte at the time lying reclined. Being in thouch whit others strugling whit the same can also be very comforting. For me the internett can bring alot of comfort, though i dont spent that much time on it. At my worst times my ever growing dvd collections also makes things easyer. i hope things will gett better for you soon. And seek comfort and joy where u can. Getting a few laughs are important when life so fare from what u whant.

Hi I used to have low bloodpressure. Have been on midorin 9 years, and a very high dose also. It was the rigth dose the first years, but then i think i have been on a too high dose for years. I have had high bloodpressure at times for years also. But i havnt been taking my bloodpressue to much sitting and standing up. I march i had a sort of episode thing that lastet two weeks. Along whit other things my bloodpressure whent too high sitting and standing then whent of the midorin. That was not good either. But i started on a lower dose,and have contiued on that dose. My old dose was 3 tabl 2,5 mg 3 times a day. Now its 1 tabl 3 times a day. My bloodpressure is all over the place, but havent gone under 80/50 or higher than 165/120 of late (but i dont take my bloopressure that often, i try, but) best of luck

Hi. I had symtoms all my life, it got gradually worse. A few fainings in my teens, and in the early 20 i started fainting alot. The docs dont really bother whit my other systoms, they are ust fixeted on the fainting. I got my diagnose back in 1998, in usa actually. I have been bedridden og sofa ridden for long peroids. I use wheelchairs when out and about, and also at home. But i do walk short distanses at the house. like in the bathroom, cos the chair dont go there (but i do have a chair to sit on, and one in the shower too). last year becouse of allergy pills i have gotten a lilte better life qualaty. The whinter is very hard on me, so this winther i was moslty in bed. I hope that will change now that we are getting a better heating system in the house. I know a lot of potsys strugle mostly whit the heat. I have alsways strugled more whit the cold. Even though I dont really sweat. That i live in a part of the world where the summers dont reallly gett that hot i guess makes a difrens i am 35 so my childbearing years are fewer. When i got my diagnose, the cardio i whent too (and still go to) said it probl wasnt a good thing for me to gett pregnant. When i gott older and didnt recover i asked again. I whent to the hospital to ask them, ofocurse they couldnt give me any answaers at all. The only thing they where focused on was how i was supposed to care for a child. I have been thinking about that a lot also. I have bigg limitasion, and would not be abel to do many many things. And how to deal whit my health issus and caring for a child, well its going to be a bigg challenge. But I have a healty partner. It will ofcourse but a lot on him. And how he will deal whit all this only time will tell. Some years ago i stoped taking any birth controll pills. ust see what would happen. When over 30 u ust has to make a choise. And i also meet and heard about people whit very sever diabilitys that has children. People that need help whit everything (paralysed from the neck down etc ). I am not working, and hope to gett disabillity this whinter, well what i really whant is getting all better, i have been on temporeary welfare for many years now. I feel very bad about it. but also know that i have tryed really hard to gett better, whit very lilte help from the health system. I hope u all gett a nice weekend. Here its raining and a lilte cold, so no summer But then lovlely weather to stay indoors in...

hi misstraci i am sorry your last pregnancy was so stressfull that it is to blame for the pots. But i think i have read that people getting pots from pregnancy or other sudden ocasion has a better chance of recovery. How long have u had pots for now? I cross my fingers for u getting better.

jupp, my bloodpressure does things to my vison, low and high...

tanx for the replyes The docs have told me that they would like me to deliver normaly. They are experiensed whit people whit high bloodpressure, ,but i am not sure they are experiansed whit the high hart rate They would whant me to not push , but use some sort of vakume. And they would give me an epidural. And also it seems like they would have the plan readdy for a c section. My dream would ofcorse to be to deliver at home in a bath tub. My dream is also to be totaly heathy i know that opium type pain meds lower my bloodpressure in a reallyu bad way. So i hope they belive me when i tell them so.. I really , well cant spell the word. I am greatfull for u shearing your stories whit me. I think this is somthing the potsies whit out children think about.

Hi I have tryed many types of alternative treatment over the years. Most of it ust cost me money and time. Non helped whit the pots symtoms. I tryed homeopathy many years ago, it didnt do any thing for me . But seems like it does difrent things to difrent people. So if u have the money and trust the terapist why not try. For me acupuncture did nothing the first time around. But years later i found one very recomended from many difrent people. I did go regulary for a year. It did lilte for the pots, but it helped whit pms, my heavy periods, and some other smal stuff. So i am planning on going back. I also whent to an ostiopath (recomeded he also). Han he made wounders whit my back, and hip etc. but again, nothing for the pots. Best of luck to you

Tanx for the replyes, and keep them coming I am whit lotusflower, if u could say if u had pots before pregnancy or not. Cos many getts their first real pots during pregnancy as i understand. If u also could say somthing about the brith it self, if u deliverd "normaly" , c-section, if they used vakume or well i dont know the word. What type of pain meds u had etc etc. I dont mind pain, but my system often reacts very bad to it, whit very unbalanced bloodpressure and hart rate etc etc. And where u considerd high risk pregnancys and got spesial atension during the pregancy and birth.? From what i read it seems like many that have bad pots symtoms before pregancy, often do better the 2 term, and then it depens in the 3 part. And then often better for about 6 mnths after, some keep felling a lilte better for longer than that. But i would love to hear your stories, and also how old u where when pregant. And what would be the risk factors for the lilte one growing inside? Where i live even my cardio know very lilte, so my info has to come via the internett

Hi. So any one here having diagnose of pots before getting pregnant? Ust woundering how the pregnansy whent for u all, and how the pots symtoms behaved, during and after it all. And for u whit sever pots how do u deal whit being a parent? Would love any input u can give me

Before i could gett midodrin the doc had to put me on a ssri. It about 10 years ago so dont rember the the name of the med. But it made me very sick, and agrivated all my pots symtoms bad. I actually had to go to the er and was admtted to the hospital.. Where i had the good fortune to meet this really nice doc saying that my conditon only was a problem if climbing ladders. So there was no reson for me feeling like i did etc. Nice nice man. I got out of there as quikly i could. And never tryed ssri again..

Its so bad that so many of us has the same bad experiens whit health care, well the lack of that is... I fell that i have been running in to a brick wall for so many many years. When i finaly got my diagnose in 98 i though yeah i am going to gett som help and understanding. And no one will think me craxy anymore.. How very very wrong i was. Got back home, and all the cradios i called refused to take me as a patiens. And rest of the docs where the same. Trhoug lots of luck i finaly got a doc how was training to be a cardio, and in the end i ended up whithis mentor. But he is no expert on pots or dys, he is an pacemakert expert. And ust intrested in my fainting... So one ust feel so hopless and frustraited and lonly. terible alone. Trying to gett a lilte life, and understanding what its happening in my body. The docs blaming everytbing on pots, a condition they know nothing about. But i se the same docs when i have somthing more normal wrong, they are capebeal and nice. I think patiens like us makes them freak out and a bitt crazy. Cos they like to know it all. And hate when patiens like us comes along and confuses them.. So all this bad experiens whit docs makes it stressfull for me to go to them. I try everythime to stay positiv and hope that this time, this time it will be difrent. This spring i did stubled along a curios doc. But she was an intern and not much she could do for me. But She tryed. If only the rest of the lot had this curiosety and open mind like heres... Hang in there all of u. I know how hopless, frustraited, angry, lonly etc lack of health care can make one feel. Its not u that are crazy, its them...

Mggirl u are not alone=) I am dylexic too (why do they choose a word imposible to spell for people whit problems whit ust that..?)And whit the brainfogg, the fact that englsh is my second lang, well i marvel that some manage to read and understand what i write I ust hope that my weird spellng can provide intertainment, and that the people whit the red pen ust shy away from my posting and writing Ofcourse it makes it very hard to say what intent to somthimes etc etc. So if i ever offend someone, mostlkely, i didnt inteend to...

If u can find some answears be as pushy as needed. And whanting answaers i dont think really that pushy at all. Even though many docs seems to think so... So keep at it. I whant to be more pushy, or even better find the rigth way to be pushy. I am sick of getting told that we have tested u for everything. When i know that it not true. My nero exam was the doc reading my journal (ridled whit wrongs) lookng over and old mr and saying, u belond whit the cardios.... But that others seems to be more of the rigth type pushy gives me hope.. So pleas keep at it. Gives me hope that i will manage the same one day (ust for clearification when it comes to ones health pushy is good!!!! ofcourse like all things there are limts, dont think u should call the doc in the midle of nigth to order bloodwork etc )

Hi Sarah It depends where in germany. It takes a while whit car. But depending on where, maby not to bad whit plane. Norway is up in the norht, i live on the west coast I am going to check out the articel. Tanx for the info

Hi Targs ; the doc that tested me told me that if the bone test didnt show anything, then i didnt have a mast cell problem. But from what i read that seem not to be all that corect. Macks mom; i live in norway. So the docs dont really have that many people to practise on. Thoug in some small earyes they are very good, like burnunit in the city i live. But they tend to be very conservative, even more so than the docs other places. And by culture we are not so open etc like the americans and people from he south of europe. I did not gett my diagnose here in norway. Here they seem to label every one whit cfs/me. And then stick them on a shelf. So its been very many loonly years for me. trying to understand a crazy body, and mostly getting patronizing or up in the air answears from docs. Lke everything is expleined whit u are stressed. High bloodpressure, low bloodpressure , not feeling heat etc etc etc etc.. I been runining in to a brick wall for so long. Starting allergy mede for sleep changed stuff, didnt do so much for the sleep, but much more for other stuff. Then i read a bout mastosytosis etc, i did fitt into alot of it. Like having weird allergy reactions, when not having allergy. how i can tolerate somthing, and then not at all (been that way since baby). I did presur then to draw my bone, the doc congratulated me on not having it. Its not that i whant a dangouros illnes. I whant answears and help. And the allergy pills can not be placebo effect, i have tryed so many other pills whit out any affect. And i was only expecting to gett sleep out of this allergy meds. But whit a high dose it reduse my body pain, takes away my skinproblems, reduses my hyper bladder, i stoped taking meds for flem, fewer bloodpressure falling days, fewer hartrate storms. etc. In combo whit getting strickter about avoiding sertan foods etc. i read online, but it often cofuse me more than anything. My understanding of english is getting better. But still its very hard. Before allergy meds impossible, cos of brainmud. I feel like a dog running in circels after my own tail. Getting only dizzy from it all And still i hope one day it all whil come clear to me. one day i will gett the help i need. I meet this doc of late, she was ust an intern at the local hospital, but she really tryied here best. if only every doc did as here. :)And if only she was my gp (primary doc) or even better my spesialst Have a good weekend all

Hi Glad the meds are helping u targs and good luck finding a doc. ust wounder is macd the same as mastosytosis..? I did have a bone draw that came back negative. But for me my allergy meds have done more good than any other meds, well low dose midodrin is also helpin (was using a ery high for 9 years, did more wrong than rigth i think). And i have very unstable bloodpresure. Most it climpes wen uprigth. But it i gett somehing in me i dont tolerate it will fall down... problem is there is no good docs for me here... So in that way, what good is "free" health care? I whent to my cardio this week. Nice man, but ust checked my hart. Yes it still was fine (and not small at all). And my gps have all neen frigthen of me. I am getting a new one soon, and wounders if she will bee the first one whit a wish to learn a llte about pots etc? Sorry ranting.... I think i have to go to uk or us. ust have to save tons of money first B)And then gett the names on the good one from u in here U know lots more than all the docs i have meet combined... Wich when thinking about it is a litle sad... have a wounderfull week. And best of luck

So i live in europe, I guess that exlude me? I have pots diagnose. I did gett a negative test for mastosytosis. But i have many things in common whit that. And there is many in my famly whit hypermobile joints ( I have my hips, but thats it i think)...

hi I must admitt that I didnt read all the replyes in depth. I got my first wheelchair i guess about 10 years ago. It was a heavy type, i could not wheel it really for my self. At the time i was homebound couldnt walk most days really. So the chair first outing was a short tripp to the libery. I used it as lilte as posible after starting midodrin two years later. And i was convinsed that i should never ever sitt in that monster of a chair. I was not handicaped!! After trying to work again, my leggs and body once more caved in totaly. And the chair was reluctnaty used sometimes. But mostly i was ust homebound for years. Four years ago we moved to another part of town, and in to a house. Here i got in contact whit a , well not sure what the englsh name is, they find the rigth equipment to make lfe easyer. She got me a lighter chair. It was heaven. And ust before x-mas i got new difrent types wheels, so now i can somthimes handle downhills, and very short and not steep uphills. But at malles etc i wheel myself most of the time. Its not the sportiest of the sport chairs, but still a light easy one. I dont drive anymore, and have to either gett some one to drive me or take a taxi. For some years i have been very very litle out of the house on my own. So the putting the chair togeetter etc is not an issue for me. Last year i think i was one or two times in a mall by my self. And then i took a taxi to gett there. But for me this new chair, and spesially now whit the new wheels means a more easy life and more independent one of sorts. Being so dependent on others, living so restricted is very hard. So ust a lilte taste of freedom is heaven. And wheelng my self gives me more exersiss, somthing that is hard for me to gett. And for me wheeling is much more easyer on my body, than standing and walking (i am now wearing a hartrate watch alot, and se why) I also have and el chair for inddor use. Its not so easy to manouver, but i can raise the seat up and down. And an el.outdoor chair. The outdoor one i havent been abel to use so much. Its stored so i need help to gett it. And it usless in the winther, and on crovel etc. I am now to turn that in and gett a nother type. They bothe have tilt for the back and leggs so i can give my body some relife from sitting. Somthing i ofcourse cant do whit the manuell chair or the indoor chair. the last year (exept from whinter, when always ill) i have been abel to finaly improve a lilte. That means that I can do a lilte more at times. But walking on my own is not an option for me. I do walk in the house a lilte everyday. But i often overdo, and then i can gett totaly bed bound. So i try to find a balance, and know that every day is alilte difrent. And most days i stay in bed intill 12, somthimes shorter, other times longer. I try to lisen to my body, and respect it. And the wheelchair is a nice compromise. I used to think it a shame etc to use one. i dont anymore. i love my manuell wheelchair. The indoor is ok ( whish it was easyer to manouver, so i didnt hit things so often). And the new outdoor chair i hope will work better. We are also hopfully to but a shedd rigth whit the door so i can gett to the chair myself. maby i then on good days actually can leave this house all by my self..? Where i live u borrow the stuff for free, but it can take a long time to gett it and somthimes once aplication getts denied. That is county sends one person assesing one needs, then they do the aplication prosses mostly (depending on what etc)etc etc. First time i waited a year for the el.chair. And this time also. But when i gett it its use is free of charge, and that is nice...=) I ust know that wheeling both in el and manuell has made my life into somthing like a life.. And it also give me exersisse. Better to wheel around for an hour at a mall, than walk ust a few steps and the body giving in... The first gives more exersiss i think, and a better life....=) best luck to u all..

I am having a laparoscopy in the end of june. I have never had one before, or any surgery for that matter. So i have no ide how my body will react. My gyn dont think i have endo, but i susbect it my self. Lots of lower stomac pain, and heavy heavy periods (well last year changed a lilte). I have never meet the doc or been at the place they are going to preform the lap at. I have sort of desided to take it as it comes. But at the question on high bloodpressure, well what to say. Now I have low bloodpressure, normal, and high during one day.. So how to explain that ..? What should i be most awar of after the prsidure..? My body acts weird, but what weird should i be on the look out for.?

hi When younger I needed a lot of sleep. I was an early riser though. If I didnt fall a sleep before 12-1 i would have a hard time getting any sleep at all, and i never could really sleep during the day. In my late teens i needed even more sleep. I wouldnt really sleep during the day, but i would try.. Then when my bladder stated getting more hyper my sleep got worse and worse, since i had to gett up all the time (even on meds). And then the growing pain made things worse, and the genarly icky low bloodpressure etc etc. So then i was an insomniac. And i have been so for years now. Last year i started taking phenegran evry nigth. I still dont sleep tropugh the night, but from not even getting an half hour sleep interupted it now depends on the night. I also take painmeds evry night and bladder meds.. Some weeks ago I had change in things, i got a higher bloodpressure all over. And as long as i took very strong painkiller i would sleep to 4-6 in the morning. And i would suddenly be an early riser again. Well not out of bed straigth away, but up much earlyer. Then it changed slowly back again. Now its lower during the night, and the poor sleep is back. I try to sleep before 10-12, but often iam ust feeling to ucky to manage that. And then i hope to sleep to 2, but often i dont. Then i ust hope to sleep the longest i can between interuptions. Sleep is one of the things one really really miss when on dont gett it. If i gett 6 hours of interupted sleep that is great for me. better than 8-9 of interupted sleep... I did a sleep studie, it showed poors sleep and i was diagnosed whit insomnia all around, in the begining of the night, during the night and the end of night. I had rem sleep, but very lilte deep sleep. But why this is so, the test didnt show.. I think my bloodpressure is a bigg sinner in this, but not the only one.. Hope u all gett a good night sleep...

How my hart rate is depend on the day. But genarly one can say that leggs elevaited and in a reclained posision it is lower, leggs down it will go a lilte up and standing even more.. But how much and how fast depends greatly. Normaly i tend to be more tacky in the morning and then it getts lilte better during the day. When i was younger my hart rate was slower when relaxing. Now its seldom in the lower 80 or lower..

I am sorry u had to deal whit this.. My journal is ridled whit wrongs. Down to things about my family and when i got my diagnose (thats facts, but still they gett it wrong) Its frustraiting beiond belife... Like the docs thinking i had a nero exam ust cos i visited an nero doc. I didnt, she said i belong at the cardio doc. Very thourog exam Hang in there...