ladyt

I always hope that i am the only one whit bad luck when it comes to docs... But i know i am not.. I was hoping that things would change.. I got my diagnose back in 98, i really hoped that things would change over the years. Spesialy in the usa, where there is a large amount of docs whit easy acsess to other docs whit the rigth knowlege.. As one of u said, if only the docs learned to google....... It makes me sad really.... When got my diagnose i hoped finaly i would gett some help and understanding. That was not the case. I know that in my country we are so few people that the docs dont se much weird stuff. And we also have a smaler medical comunety also. But they do have internett here too.. But dont seem to know how to use it here either.. But here the diagnose of me (thats what cfs is called here) is abnormal high. And the patient getting that diagnose is badly treated by the docs too. One thing they have is a strong sort of me union of patiens. And it seems to bee very hard fronts beetween the me patiens and most docs. Thats no way to make people healtyer.. And what if the docs things its all in their minds, they should still help. I dont think anyone whants to lay in a dark room all the time ust cause they are lazy... Ofcourse that is the extrem cases. i have a realtive whit me, She had some thyriod issus. But even after they cleard she was very fatugied. She is abel to do more than many in here good periods, like travel, skiing, hiking etc etc. But then she needs to stay on the sofa for a while after. The docs didnt really do many test on here at all. ust the tyroid thing and normal blood work... So my feeling is that there is many here whit treatbel illnesses that dont gett treatment. Ust like there is many resons for pots i think there is many resons for me.... The docs here ust seems to think that that type of patiens are attension seekers, weak minded or after medical dissapility... Yes we have a nice welfear system here, but as young on welfare, well if it wherent for my boyfriend i would be poor (living here is very expensive, very). In does group that have been working for years, there i think and know there are people angling for diability, cause they gett much more. And then you have the younger once that works on the side illigaly.... But this was off the point really.... I am ust sad that so many docs all ower the world is so conservative, only seek the so called common sence answers (that or not common sence, but predejust), and dont know how to seek for alternative answers. In either other collegus or the internett.....

Hi again.... I am now off gutron. my bloodpressure is now all over the place . After laying down for a while its normal. But the longer i am uprigth in some form the longer it take. My puls is getting more and more out hand. I know i have days where my hart beat goes from, very low to high over and over i again. I use to think i had migrains then. But it seems to be difrent now. Then again i havent been using my puls clock for over 3 years so My puls seems to getting more and more out controll. Even when laying down, in a difrent way from before. yesterday I had a friend over, not the wises thing, but i was laying down the hole time. The pain in my body gott worse and worse, and after it was straigth to bed. I took some heavy duty painkillers and rested. It helped eventually, then i had to go to the bathroom, the pain gott worse again, and my eyes got red really fast. I had to take the heavy pain killers again. Luckly my bladder is much less hyper than it usuall is. In the night i had to go (but luckly again only once, which is really never happending otherwise). My pain whent worse again, and stayed whit me the rest of the nigth. Now layong in bed its not so bad, not gone, and increasing when typing. But i know it will increes when getting out of bed... Does this happen to any of you? And have any of u had a change more or less ower nigth...? Hope u all had a nice weekend...

hope u gett some answers.. best of luck

Well put todd, very well put... My cardio have never said i have a small hart, maby he didnt whant to offend me But he did belive that my fitt body and lots of exersis did make the begining of the illnes grow slower.... But slowely the more i exerisied the sicker i would gett. I kept trying difrent types for years, not working. Then i desided to stop trying. Only thing i would keep up was the headtraining... headtraining is me laying in my recalined bed or chair, closing my eyes, and pretending to exerise in some form or other. I read some where that this could increes the mucsel mass, probl not. But i do it still... then my other thing was trying micro training and getting some few hours a year at the hot pool in the hospital. The micro training didnt work, the hot pool was very good for the mucels and joint pain, and warming my cold body up. But not more than that. Then i stardted thaking phenegran every nigth (for sleep, but it an allery pill). And the last year I have been abel to do some micro training, and at times be alilte more active in evryday life. I am not getting better, but still in some ways i am getting stronger. Sorry i am not that good to explain things. More bad days and bad weeks are ust as bad as they used to. But I can se the faint shadow of the mucsels i onces had, And that feels great I wish i could go in the hot pool every week or so, that would have done a great difrent for me. I did try to ably for difrent rehab facilitys etc, but they either said i was to healty or to sick .... It would be more honest if they said, you have somthing strange that freaks us out Or i wish i could go to a semi hot pool, but i do need the lifegaurds, have a tendencie to gett very ill on the way out of the pool etc Sorry drifted off into my own stuff here.... I am very happy for does of u that have benefitt from exerisise etc etc ..... I think most of us should start on training like that when followed closely by a doc. many of us dont have that sort of doc, health care person.. And many of us are not on the rigth meds to benefitt from training.... I hope to find some better working combo of meds. But not sure how to do that rigth now. i did stuble over phenegran,so maby i will have a lucky stuble again soon.. If u doing the program will keep the rest of us posted that would be great... Spesaly if u actuly gett cured.. About that, some people actually gett better on their own. From what i can read it seems to be the one having it when young and after viral infection. So how can the doc tell if its the training ore ? sorry drifting again ... If any made it to the end , sorry for the rambling Best of luck all and have a lovly weekend

It does seem like most people whit some sort of cronic illnes do batle fatigue in on form or other, or in many forms and shapes.... Like for most ms patiens fatigue is the domenat symtoms before and often after other symtoms arive on the scene... It seems like living whit pain tiers one, thyroid stuff tiers people, depression tiers people, the list could go on on on... For me that was not the domenat symtom when younger really. I was very active, but i would have short periods i gess one could call fatige of some sort. And some activites would wear me down more than they should. But at that point of my life i actually sleept a lot, and well. Seldom during the day though, I have always needed to gett to sleep in the early evning or night. And i could never do like others and sleep in. Over the years the fatigue has grown. Sitting and the lilte walking i do tiers me, some days more than others. Some days i can se why I am heavly in brainfog and body fatugie others not. And often its hard to seperat what is happening in the body. Was is fatugie what is the rest..? And when not sleeping well for years, no wounder on getts tierd. When i do take sleeping pills ansd they do work, I do feel refreshed in the morning. A almost strange feeling. But whit doing stuff i gett gett easly tierd etc etc. But whit a racing hart i dont think that is weird. But starting to write this i had some thoughts on the subject of a difrent kind, I hope u havnt drifted off before getting to this part=) Last saturday, that nigth i actually sleept well (for being me, the first part of the nigth i sleept 4 hours not interupted, usaly am lucky to gett 2 hours whit out waking up in the begingin, and then the rest whit smaller intervals).. I had this strange headacke though but i feelt much better in other ways. like not tierd and fatugied. I wasnt really awar of how tierd and fatuiged i really am before it ligthend up. So i lilte part of me though, yeahhh a miracle, but sitting and in the shower other sytoms started to grow. Bad, the end of it i had to return to bed. Sorry to use to many words to explain this. Returning to bed at first i feelt horible, but laying there (not flat, i never do that, i am reclained to some degree always) the headpain when from worse to better, and as long as i kept my arms and feet still they where less painfull. And the momenterly fatuige i had washed away. And saturday and sunday. I could actually read and so more imortant remeber what i read. I didnt feel fatugied at all, exept for after i had been to the toilet.. I couldnt type ore read long on the computer either, but i was mostly clear in my head. Its was bizzar, but i really liked that part bigg time=) Ther rest of the week the bizzaro sytoms stayed, i tryed to do some stuff, whit more or less bad outcome, but also some sort of small victorys (well maby not the right word, when i actually puched my self to do somthing, and not feeling good after). But my sleep whent back to normal bad and whit it the tierness. But still this week, being on the computer have had other effects than normal. Like not so much brainfogg, but a growing headace/pain, and painfull weaking arms. Like now. I whent to my subtetut gp, i got here to take my bloodpressure, insteed of getting low when siiitng and standing , it got high. I puls was the same old weirdo as ever. So this week have been a bizzar one for me.. Whit difrent forms of symtoms, like a difrent headace, difrent nausa, difrent bodytemp etc etc.. But for a couple of days i feelt sort of inteligent when laying down and not moving. That was great. So what is fatigue? and why do we gett it? difrent reson for difrent people i gess... wasnt that a great answer But as naomi said it its just a classic symtom of most illneses....

Hi... I think docs handle poorly to be un the shaky side , so insteed of trying to undertand the patiens situation they start looking like crazy for the u are ust stressed out explanation. I am now at the piont that i belive if i whent to the doc whit a broken legg he would ust say u are stressed out or to layed back or somthing I have had the tilt test, thats how i got my diagnose..=) wouldnt it be wounderfull if only people over 75 could gett sick..? I hope u find advises and info here that can help u deal better whit the stuff u are going trhou.. i dont have any for u now, exept to say there is many of us that looks fine (or so some claim) on the out side but are a freakshow on the inside.... best of luck

Thanx for the reply=) Ust woundering what meds are used to controll when it runns high insteed of low? For me its been mostly low, or ust the underpressure going high. is is totaly new for me....But my puls is ust as crazy as always, somthimes worse, but same old same old really...=) Firewatcher do you travel by plane?... The last two days i have been lowering my midodrin dose, the only meds that i have been taking for my dys , my other meds are pain meds allery pills (dont have any, but they help) hyper bladder pills etc... I live in a contry whit so called free health care. Problem is small contry, and the docs are cluless an dont like to admitt it. I have been going to this cardio, but he is an pacemaker spesialist, and is ust intresed in if the meds is damenging my hart. My old gp was cluless, and here subtetut seems to be likevise... Its like they ust whant to put me in a closet and forgett that i exsist... Sorry about the complaining but i gett very frustraited over the health care i resive, well the lack of is a better word... Spesaly when suppsedly living in a contry whit such a great health care system. So fare on the inside it hasnt been much great for me. Ust lonly, The docs can ust give me a prescribtion block and the care will be the same....... I dream of many things but when it comes to docs i dream they could learn to work togehtter in the best intrest of the patiens health, that they would widen their mind and curiosety and even be open when the patiens doesnt fitt eny of their boxes learned at school...And that they would se that giving a higher kvalty of live to a cronic ill person is ust as cool as saving some ones life or curing them.... I have been insanly thistry of late, and not running to the toilet more. Actually a lilte less... Maby u are on to somthing firew, maby i am having a virus or somthing.. Ust hoping it disepear... I really reaally whant to go on a real hollyday, i used to dream of traveling all the time all over the world... Now i ust whant to spend a week in barcelona....=) I send most my time in bed or in my livingroom..... I was used starting to feel some what of control of my bizzaro twisted body, ofcourse not really, but ust starting to se a sort of system to the crazy..and then the o no thats never ever going to happen... tanx again for the replys I wish I had a magic wand to wawe over us all...=) then i could travel around to all the dys and potsys and be the fairygodmother, bringing stabel puls and all the rest to us all...

hi again.. i am starting to gett a lilte freaked out, i normaly dont gett that way. But the change happend over night, from one thing to another. A distend family member had that, the rising blodpressuer, his body couldnt handle that. I searching online yesterday, nothing nothing nothing... The weird thing is laying semi down (i never lay flat) and whit feet rasised, my brainfogg is gone. The thing making typing hard is my brain hurting and my hands. ... so any one experiensed this...? Ps read in dr grubb book that hyperadrenic pots gives high bloodpresure, i know there is not that many whit that pots , but if there is any one whit it in here what to you do meds wise.? Do u have normal to low bloodpressure when laying down? And how can this change over night? I also have had i rise in body temp. I am normaly 36 c to 36.4, now i am 37 c (which i know is the normal for so called normal people) and up to 37.5. I have been growing in thirst, saturday and sunday my eyes would gett red on a sec, now it varies a bittt mor. I have pins and needels and a sort of your feet is sleeping feeling , that increeses when sitting (and standing), and if i use them. Like typing now.. I am used to a freakshow inside my body, but this is difrent. A difrent headace etc, and then the high bloodpressure.. I could really need some sound advice, well any kind of input really.... I am rather desperat

hi .. i think they only help if low pressure. I have been using the ust for the calfs type for a couple of years, i will wear the thigh high on spesial ocations and somthimes the all the way ones ... But that was when myy presuure was low. Since saturday it has been high, so i gess no piont in wearing them now.... it seems like some is very fond of their suport hoses, others use them at times, and for others again they are ust useless. But what els is new..? best of luck

Hi I hope that some one here can be abel to help me, cause as usual i sort of stomp the docs.. And since i am to travel to spain next week i need to find a way to handle this in some way. I Got the dys diagnose back in 98... My main issue have been the tacky and some lowe bloodpressure. I have had sort spells of high bloodpresuure but not like this... I woke up saturday feeling difrent. I had actually sleept quet weel during the nigth. But i had this weird headpain. I did go into the shower and feelt weirder and weirder, and after the shower i was shaking etc, nothing new, but still very difrent. The headac was difrent the comp of symtoms was. Then i layed down, the headace grow stronger before it disepard again. And the weird thimg, as long as i layed still i feelt fine.. And that is weird. I couldnt but my leggs down or move my arms much before getting weird sytoms. But laying still i feelt fine, which is also weird. I was abel to read i felt no fatuige at all etc etc. It stayed like that sunday too. And almost similar from then. I Cant sitt long or stand long, stand long is nothing new, but sitting is usaly ok when i feel fine when laying down.. I whent to the doc today... My bloodpressure was 160 somthing over i dont remeber when sitting, standing up i was 170 somthing over a 109... By puls ofcourse whent from 90 up to over 115 etc , but thats normal... She called my cardio, he didnt know why. I am supposed to lower my dose of midodrin. But My bloddpressure is fine or low when laying down... i have been on midorin about 9 years so shouldnt really be side effects..... Any idees anyone....? i am used to deal whit low bloodpressure, and the the very seldom high, but then its not like this.. I also have a difrent stomac pain, and my neck is geting painfull too...... Feeling a hole difrent awfull rigth now... I dont know what to think, and the doc ust said well u will lower the meds and that was that... So now my hope for help and answers lays here at the forum, u are usaly a hole lot more helpfull then docs....

hi and welkcome.... I think most of us are sort of good actress/acters. I tried to hide from my self even. I do it still somewhat. i try not too. I am and have been fighting to be as healty as possible, i try not to waste to much energy on acting. But I think it somewhat hardwierd into many of us, me included. I used to be very very skinny growin up, eating a lot, and then days i didn eat much at all. In my late 20 and now in my 30is I have gone up and down alot. And my heavyest is not nessersy when i am eating alot, often oppesit actually. I can gett to grow a size in ust a short time, like suddely looking pregant, or not getting my shoes on etc etc. My bra getting thigt, panths etc etc.. well sort of foggy my brain to day. But welkomme again. =)

HI.. i did it too. It would be a dream come trhough if I could se some pots/dys people to tell their stories on oprah, or an intervu whit dr grubb. I hope if we gett to be many enugh they will hear us...

hi.. I have so fare only heard good things about grubb. I so whant to be abel to gett an appointment whit him some day. So fare its pretty close to impossible. Since i live in europe and my cardio has band me from flying so fare. But I have my own secret plan, well not so sercret since i tell u but still=)). First of all i have to gett my perment dissabilty welfare thing. Rigth now I am not alwaod to leave the contry for longer periods. My plan is to take a cruise over the atlantic and then one back again. The ting is that is min a 3 mnth stay in the usa. But rigth now its my best hope. I am so glad to hear about someones productive and nice doc appontment. To day of all really. Cause today I have hit the wall again. Sick of being sick and only getting the brush of by docs. I did gett tested for mastocytiosis. It was negative. When i tryed to mention mcad the doc gave my the crazy look. I live in a contry where we are supposed to have the best health care. We dont, the docs are very conservative and since a small contry well few docs too. Like I have mentioned to several docs that allergy meds gave me the abilitey to feel burns etc. I have gott newly boild water on my legg, and i didnt feel it, other that it was weath. The docs dont belive me. The doc yesterday said well you have been to a neroligist. Well yes, but the nero ust weiwd my old mr and said i was all fine. I would love to have here x-ray vision.. Sorry not didnt meen to start ranting. I really ust whanted to say it so very nice to hear that there are disent docs in the world. even though its on the other side of the bigg pond..... Love to hear about your visit whit dr grubb himself....=)

Hi.. In general my best period is from ovulation to the day before my period. My worst days are often during my period. Like now i on the second day, and in bed.

Thanx for the answer. I didnt understand it all I must confess. Only that ist sounds like it can be helpfull for someone whit dys. I am glad your daughter is getting some help from this meds and hope it continue so... I migth ask my cardio about it when I have my yearly chech this mnth. He is no dys doc, but the closest I gett to one here.

Hi=) Sounds like this is a med that help some of u, great=) I know nothing about it really so can u tell me what its supposed to help whit? if u can gett it over the counter in england, what is it supposed to do? I have been on midodrin for years, its better than whit out, but still i am mostly ust laying around. So like the rest of u i am always looking for somthing that can make me better=) best of luck too you all

Hi... My wheelchairs are life making. And yes i have more than one. I have on electric for in side use, so no need to push it forward. And then i have a small manual outdoor chair and and el one. I actually use the manualy the most rigth now, when outdoors. Cause when going to town and stores its smaller and easyer. I am almost always whit some one so if its to strainuois they can push me. I ust got me some new wheels and they are ust wounderfull, now its easy breazy to push when the ground is flat, and i can push over bumps and short mini hills (when the day is right). And when i gett to much of anyting i gett someone to push me. The out door el chair i can elevait and rais my leggs and lower my back in. I do walk indoor a lilte every day, some days only in the bathroom, since i cant take my elchair in there. other days more, depending on my symtoms. But for me, there is a worlds difrens between staning and siiting down. On better days, or a better hour during the day i can make some us by it by using the chair. if i walk i will gett much less done. Some days nothing at all. on days that standing is very dificult , but siiting is posible I can gett me some food and stuff much easyer than before. For the last couple of years i have started too use diftent aids as posible, like the wheelchairs and a ust resntly a bed that can elevait my legs and head. They makes all the difrens in my life. i still spend most my life in bed or in the reclainer. But not all... And for me it seems like using my arms, when not to strainiuos is lots easyer than trying to walk. I actually gett more exersis now, than i did when i tryed not using my wheelchair. But we are all difrent=)

Salt tabl work for some. They where to strong for my stomac... Lots of salt on a boild egg and popcorn , and ond the food in general

hi.. I have hair loss at times, lucky for me I have thick hair so. I dont take any of the meds u take. I did have a b12 def at one time, when that taken care of, my hair got better. But i still have periods of hair loss now. But since a take b vit it doesnt gett as bad as it can...

hi Many years ago, thats last century I did exesise and stuff every day. I loved to dance and work out and ride my bicykle and lots of other stuff. But it got harder and harder to do stuff. 1999 was last year i did propper work out stuff. That year I got worse even though i keept up my exersis regime. Since then i have been trying to do exesis and stuff, mostly whit out much luck. Now I think of every movment as exersis. Since I have been very gravity challenged for many years now. There is one thing I do as often as I can, I exersis in my mind. I read that that actually have some positive effect on the body, not much, but still. So I run and lift weights in my head. Swimming i understand is great for pots. I have acsess to an heated pool two short periods every year now. That have been great. I cant do much when in the pool. I tryed in the beggining, but it would put be back to much. For me its best to dropp movment when the bodi is an sertan way and then try a lilte when its in a better way. Like today i really would like to try my recubent bike. But i know that that will make things worse. If i take it easy today, i migth move some tomorrow whit not so much consecvens. Whit that i mean that i can rest for some hours or the rest of the day and thats it. Fo me very short is better than trying fo long. On the recumbent bike its 1-3 min at most. Mostly as i said I consider all movment exersis now. And hopfully on day i will be abel to normal exersis on a regular basic... I also try to move my arms when sitting in the reclainer. Like movments whit out weights, looks funny, but weigths getts to be to much. And i gess that its better to move slowly as much as on can, than do a lilte exersise and be gone for a week or more .. Best of luck...

hi.. I ust got an el. bed. So now I can much easyer rais the head end and the legg end. Both seems to help whit the pots and the sleep. Laying totaly flat is not good for my pots i have found out this last year or so. I have put pillowes under my feet for years , then laying flat whit my head starded getting a bigg issue. So then it was to use more pillowes in that end too. And now I have this superb bed. i am so so happy about it so fare...=) best of luck

Hi =) I live in scandinavia. Dont have anything close to spesialist of any sort here. There are some in oslo that know a litle about mastocytosis, but i dont thing they know about mast cell disordes beside it. It seems like docs dont really know what to agree about alot of things. I really wish i had the brains to be my own doc. But i dont. Belive me I try. I figured out that penegran helped to relive some of my symtoms. I desided to try asprin. But i wish the doc could offer more than writing out presicriptions. At least try to help me in some lilte way. Can I ask what meds you are using? And wht they help for? Why do u think u have a mast cell disorder? I dont mean to pry, i ust try to gett my head around this all. And i think the info i can gett here is my best bett on finding a way forward. I have an appointment to a hemotalogy doc at the hospital rigth befor x-mas. They say they can diagnose mastocytisis. I am not sure. Cause i understand its very dificult to do so. Even whit the bone test. It has to been done rigth. THen I read that the test dont hurt much if they preform it rigth. But the medical adviser said it would. I am not afraid of pain, nor needels. But i am afraid of coming up emtyhanded again. Emtyhanded in the way that i dont feel secure in that they will do it rigth or take me serious. But i have to keep trying i gess. Are the any online medical shcool for dummies out there I hope u gett some help from the docs u are seing. Have u been to the autonomic spesialist before? What can such a doc do that a gp cant? Do they make a difrense? Have a lovley day

hi.. Insomnia is a bigg pain in the ...... . But for a few mnths now mine have been better. And i have had some symtoms lessen a bitt (but not always and still well, not well). I take penegran in the evning. and as low dose asprine as i can. I have ust started takeing the apsrine. It seems to help whit pain and flushing better than paracetamol .... Macks mom I thing i migth have mast cell issues, spes since allergy pills seems to help me whit some stuff. And i dont have any allergys. But still i do react badly to lots of stuff. But for years i have more constpation than the other. And that is not whit mast cell. But when i gett it to work its well the opisit of firm=) But the people I am trying to gett help from says that penegran dont help peole whit mast cell. But it helps u so? What is atarx.. I have had dys for yrs and yrs and yrs, and I gett more and more confused. But i ust hope that my sleep ust continue to be mostly better than before. Insomnia is ust awfull. My brain is working hard enough on sleep, whitout it there is ust no way... By the way somthimes a bitt of popcorn (pop it ourself whit no butter) and salt it, somthimes a lot. That helps me. Popcorn has somthing that makes one more sleepy, like turky and banana. The ting whit popcorn is that it often helps whit feeling unwhel in the stomac, and as ai said a great way to get salt if u need that.. Sorry rambling , but my brain has left the building... sorry..

Hi.. I dont really dont know what to do anymore. For years my only doc that have done anything close to treatment is my cardio. But for the last years i only go there once a year and he feels he has noting more to offer. He is not a spesaialist in dys in anyway. He ust has gotten stuck whit some patiens like me cause nobodie els whant us i gess. He put me on midodrin an I am greatfull for that. But so i have been my own doc, whit lilte luck. Some i have managed, but i am getting very frustratied by how lilte help I gett from the medical profesion. And i am considering trying a doc in uk or other plac in europe. But what can a spesialist do ? is it worht it? And how much does it cost? I qm trying to gett test to see if mastosystosis can be a part of my pots. But it seem also to be dificult to find out, and they seems to be very sceptical. I ust dont know what to do. Any advise ? i hope so .. I really really need it..... tnx

Most my life for many years have been very very litle done. Most spent in bed or my reclainer chair. last couple of mnths i have bben abel to read and actualy remeber some (but not everyday or for hours). I have also some days that i can do a lilte, but so easy to overdo it. and after outings i generly gett worse for hours or days. Some days i stay in bed most of the day, and then in the evning feel better something. What that somthing is depens alot. Some days I am ust gratfull if i gett to feel a litle better, so its more comfertebel to exsist. other days i can preper a light meal or very ligth cleaning. I can not empty the dishwasher in one time. The a bitt better moments in some days of the mnth have come after starting on allergy pills. i am very ggreatfull for it. i can do some knitting and stuff at times. But have done less of it latly, cause i try to collect time to do bitt bigger stuff, like cut veggys etc. i am very greatfull for tv and my bigg dvd colection, whit many difrent sorts of dvds, like very braindead enertainment for very no brain day and up.. And then even more for the moments that i can do somthing other than tv=) that is a slice of wounderfull.... i hope for more and more woundefull, if not, then i hope that it doestn gett less..