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ladyt

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Everything posted by ladyt

  1. Is the same for me, ust that i have never fond any treatsment. My mouth dryness depens. Actually the only dryness that is always irritating is the eyes. I look like a vampire to often, and not the cullen type. And for me Its worse in the evning and during the nigth. During my pregnancy it was mostly ust my eyes. And now Its all comming back...
  2. I voted the fatigue, cos that the result of many of the above. When i was younger fainting and ligthheadigness would have been it. But now it so many tings combind. And Its not always the same that is worse. Some days is the dizzyness, other insomnia, Then it migth be nausa. This syndrom is a giving one. But what it all give me in the end is fatigue. A wheelchair makes the fainting low on the list now:)...
  3. I see from the respons here that my english is not as off as i think it is. I try not to be offended When psykosomatic conections is mentioned, cos i think that can be a part off all illnesses. Like of u gett any life chanching illnes u will be efectet in many ways. But what offends me is the hidding behaind it docs do. Like it all in Your head, and u are resposible for Your one health.... And like we inn here ,many People have pots for many difrent resons.
  4. Hi I have difrent types of wheelchairs. My Old manuell chair was a heavyer type, Whit higher back and wide in the Seat. My new one ( well Its been 5 years now) is snugger and ust to the lower back. It actually alot more comfy and easyer. Its a rigid frame, the wheeling goes of and the back can push to the Seat. I have one footboard, put Its not tukt under. Its actually comfy to. But ofcourse i wish Somthimes i could elevate my leggs. I have a panthera chair. My wheels on it are a modifid type Whit a bigg comfy ring to make it easyer to handle. The old one i could not wheel my self. This one i can , that is i use it at stores and malls mostly. But also in town ( Need more help). I have an out door chair to, where i can raise my legs , tilt , and lower the back. Its late and my brain is litle off tilt. So This is the best help i can give today:)
  5. I wish i could understand This articel a litle better. But as comented above, the heavy leaning on psychosomatic was maby a bitt much. Ofcourse the mind plays a rolle inn all illneses. And ofcourse anxiety will worsen pots symtoms. Ust whant clearification please, was it to be u derstud that symtoms not dirctly to pots was to be considerd psykosomatic? And When hart rathe regulated, any symtoms on still has psykosomatic? Since pots efect so many difrent People of many difrentresons it seems like i must have misunderstud some How? I guess the more People reading This articel the more opinionen we will have...
  6. As its said above me here. It all depends. For some it does for other not. I got diagnoset back in 98. Then i had had stuff fore ages it feelt ( tsome always, but got worse in my teens). I was told i would grow out of it. Jippi. But i didnt. It got worse for me, whit other stuff slowly pilling on. And how i feel dont always corelate whit me bp hr at all. When i was pregnant my bloodpressure whent very regular, but my hart when wild. It was not bad at all really, i got really much better during the second trimester (worst in third) and then i have been better so fare after. If it last i dont know. But what it got me to reliase is how sick i have been and still are. As its been said why u have pots plays a role in if regulate the hr and bp will "cure" u. I dont know why i have this, and what type i has. Docs here ust whant me out of their offices But i have a very small hope now. A nero doc has been to brittan a year on a autonomic clinnic. I hope to be abel to gett an apointment whit here. She migth be abel to help. But then again hope mgth be vain and dangerous. I wish u luck and hope u gett to regulate hr and bp and live life to the fullest.
  7. I loved it. but lost it. so ery glad i can find it on ytube
  8. I hope vandy will be abel to help u too. I know one whit fibro that also have periods that she doesnt walk straith, cant hold on to stuff and bigg issues whit food. But then she will hae better time. I hope that will be the case for u. Its not fun when the body trow u for a loop and twist stuff upp even more. best of luck and a bigg hug from me
  9. Like my man says, its hard to know how i feel. But he tryes. when we meet i was allerady sick whit this stuff. But was in a brief better window. I told him how bad my health really was, but he didnt belivve me. before the first year i had a bigg chrash . But he still whanted to move inn whit me. He later told me that if he knew how awfull my health was he would have keept his distance. But he coudnt blame me cos i told him. never ending illnes is a strain on the relationship. But we have been togetter for 9 years now. and since i ust bougth a rediculus expensive dress ( for me at least, have had nigthmares for days, and apperntly on cant change one mind whit out losing the deposit) it better last till 10 and then some many years more.... hope u gett to talk whit our man and explain. and often ust ranting alilte helps
  10. I have had this problem for years. only have pots diagnose. But for me it is not always bad, it all depends. But i always need to use sensitive shaving stuff and do it in the end of the shower. And not to often. Once a week or less (my partner is used to my hairy leggs poor thing) Any of u tryed waxing ? I did it once, whit horible results. But wounder if i shall try again.
  11. Hit by a train ( well never been , but ...), dragged after a horse ( done that), rigth of the roller coaster are what i feel some morning. Mornings are never good. But Its not the same everything morning. Some mornings my head is worse ( like i feel the gravety dragning all the fluids out of it, or crushing my brain down etc). Other mornings i am week all over, or and have terrible pain. But one ting is sure i am worse in the mornings earlyer days as a rule. When younger i was a morning person. I miss that. Then i also slept well. Now i strugling Whit insomnia, but after getting my boy i sleep better generaly ( Weird, i know). Still sleep very porly, but i gett some more sleep ( if the litle one sleeps). But so any of u strugle Whit being Abel to sleep during the day? Even Whit no sleep in the nigth, i still gett no sleep during the day..
  12. I wish u best of luck. And hope u gett to talk to the anest.doc. Thats the only Kind i like. They took my condition very serious during my c- section.
  13. i used to have great balance, well that is when it was at its best, it was great But i would suddely have balance problems or not so great balance. Now it depend greatly on the day. I use wheechairs alot so, but walk at home as much (or more) that my body can handle. But my great balance is gone. And how it is at its best i dont know really. Not great, maby ust ok
  14. shan1212 so glad u avoided the c section this time. and hope u find the balance.
  15. hi I havent been on this forum for many mnths now. I ust got a lilte baby boy. I would love to share my story, but a really to tierd rigth now. I got a lot better from my pots symtoms in second part of my peregnancy, and then i got worse agin. I ended up whit a c-section. I have a wounderfull partner how is a lovely father. I could not do this whit out him. But we are all difrent. I didnt think i would gett pregnant, so it was a bitt of a suprise.
  16. I didn't out grow it in any way. I am glad pots gets mentioned in the press, but wish for more stories of the badly aflicted ones. Like myself i guess. Going togetther as a group and write to "the press" sounds like a good idea. Docs dont get it, the public dont get it....
  17. I have had blushing probably forever. But then mostly just my face and neck. With allergy pills it has lessened (but acording to the doc i dont have a mast cell issue).. I do have burning in my feet and hands and sometimes all over my body, but that i think is of a different type than what u are thinking of...
  18. Maby ab is the cure I am 0 + myself
  19. Sounds like a doc too me. And there are too many of them. Or maby i have ust been very unluky over the years But there are some that are nice, but still clueless. I am sorry u have this meeting, but glad u have a nero that u can work whit
  20. Mobil as doing stuff or mobile as walking? Right now , being pregnant, i tolerate more standing and walking. But still I doupt it gett to be more than 30 min a day, if even that much. Some days maby more, other less. But whit my wheels i can gett around for lots longer, ofcourse still depending on the day...=)
  21. Thanx Been lovering my allergy meds, hope i will feel better any day now
  22. Hi Have not had that problem for years But when i was younger i did. So i really do understand. But what ever way I dealt whit my docs they didnt understand. They ust didnt belive me. But more and more docs gett more knowlegde about dys etc. But trying to explain the best way u can how dys influenses your life, even though u can also be active. Best of luck
  23. The thing about pots is that its a collection of symtoms and not a illnes in it self. So that makes its so much harder. Many of us know the reson why we have pots, many of us dont. I am in the dont group. But i hope to gett in the I know group. And for the first time in many years I have a lilte hope again. But back to topic... I am at this momment pregnant. I am about 4 mnths now. I got diagnosed whit pots back in 98. Have had symstoms of weird stuff as long as i can remeber. This is my first pregnancy. Back when i was 23 my cardio told me that i shouldnt gett pregnant. Then he said he had now ide how it would go for me. And now he thinks it migth do me some good if i am lucky. First 12 weeks was very low in energy and lots of nausa. I was more usless then normal Then gradualy I got better. last 3 days has been not so good. But we are ina bigg renovation and i have had lots of apiontments. So if i consider all that i am in better shape then for years and years.. So a larger bloodvolume is a good thing for me..=) I love it. But many of my other symtoms and weird intoleranse symtoms etc are ust the same. Since i have gone done on allergy meds i strugling more whit that stuff. But my pots symtoms are lot more easy to handle now. =) Worse day in a long time was yesterday, when my hart rate was actually rather low. And i had sleept really well (for me)... So i hope i will continue to feel better during my pregnancy and even after. Evry thiny bit of improvment is very welckomed I hope that there will be lot more recearh on pots and all it difrent reasons. And pregnancy and pots.
  24. The weather and drops makes a difrent to me. Sometimes more than other. I hear most pots patiens complain about the heat. Not a bigg problem here. But the temp can fall quikly, and it rains a lot. Has been two weeks whit warmer and not so rainy, lovely for my body. Not hot, but warm.Between 14-22 c during, the last two days heavy rain and drop in temp. I feel it in my head and my body. I wish i lived where it was a litle warmer and lilte less rain. We are now planning to install heat in the floors, warm wather
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