I have a chapter in the book I am writing titled Dysautonomia is Real! I would like you guys to be honest and write how you feel it is real, how it has effected your life. I want people that read this book who do not have dys. to learn what it feels like. The best way to get the right information is from all of you sufferers. Thanks Lynn

it has left me bedridden and in a wheelchair when i go to the doctor and i miss traveling and working because i stay dizzy and lightheaded all the time when i try to stand plus my body hurts and my stomach swells like i am pregnant so all in all it has left me in pretty bad shape hoping for a cure.

Hi Lynn,

Good luck on writing your book! I've actually thought about taking up writing myself since it's one thing I can do while laying down and whenever I feel like it.

I'll try to be brief... Anyway, just yesterday my husband was referring to how all last week (I've been in a flare for over a week now) he thought of me as "Goth Janie." I had a little bit of energy last night, and we were finally able to talk and laugh a little bit. He says that Goth Janie just lays there with no expression and says nothing. He really misses the "Normal Janie" but understands that I don't have any control over this disease. And that about sums it up when you look at me in a flare. Even moving in bed can make my chest hurt, heart race and I feel like I can't breathe. I can get a little relief by laying flat and trying to think of or feel nothing at all.

I think what triggered this last flare was getting a new dishwasher installed. We live in an old house, and when the old dishwasher was removed, some water leaked from the disconnected pipe and dripped into our crawlspace. My husband was at work, so I had to go under the house myself and set up fans to get rid of the moisture. I believe the stress of water under the house along with the physical exertion to clean it up has triggered this last flare-up.

I'll try to list all of the dysautonomia symptoms I deal with. My blood vessels over dilate and overconstrict so I had spontaneous frostbite all last winter and venous pooling all summer. Small changes in temperature really affect me so I dress in layers and always have a bag with an extra sweatshirt and pair of wool socks and an army blanket. Sounds like a lot but it's better than blue feet!

I have painful skin all over my whole body, but in particular on my feet, hands, face, and mouth. My mouth tastes like metal. My feet not only turn blue, but can turn red and swell if they get too hot! This means I usually just wear Birkenstocks. I also have to wear loose-fitting soft clothes, and sometimes I even turn them inside-out so I don't get irritated from the seams against my skin. So much for fashion.

When I stand, blood pools in my feet and hands so I have to keep rocking from foot to foot in order to keep blood flowing. Otherwise, the blood pools in my legs and I don't get enough blood to my brain. Never mind the attractive purple feet...

And I love my hottie husband. We got married just last year and were looking forward to a steamy sex life... before dysautonomia. Now I have the sex drive of an 80-year-old.

I can't work anymore. I remember my first dysautonomia flare and it happened while I was at work. I used to work as an RN in the Recovery Room. I had been feeling poorly all day, kind of like I was coming down with the flu. I had just finished admitting a patient from the Operating Room and given him some pain medication when all of the sudden I felt very dizzy. There was a monitor next to me that wasn't in use so I turned it on and put the pulse oximeter on my finger (that's a device that measures the oxygen concentration in your blood as well as your pulse). My pulse was 160 and climbing. Next thing I know, my half-anesthetized patient was watching me wheel out of the room to the ER.

I haven't worked since May, 2007. Now the only patient I take care of is myself!

Hi Lynn,

I'm a 40 year old, married, mother of 2 girls. I believe I've had POTS for much of my life, probably due to the joint hypermobility syndrome I have. However, 2 1/2 years ago I had influenza B and it changed my life. I used to be quite an active person, walking, weight training, homeschooling, and doing all kinds of different crafts, such as sewing and scrapbooking. I also love to decorate and was constantly changing my house around and painting this and that room.

I started falling down occasionally about a year or so before I had the flu. I used to think maybe I was just standing up too fast or something, and maybe that just happened to everyone. I never bothered to mention it to my doctor. I had started to become tired very easily, and would have times where, for a few hours some days, I would become freezing cold for no reason--especially my feet and legs--so I would lie down in front of the fireplace with blankets on and sleep for a while.

Then in March 2006 I got the flu that changed my life. I was extremely ill--should have been in the hospital--and I just never got better.

When I get up in the morning, I look somewhat thin, but after just a little while my legs and feet are swollen and my stomach is huge and bloated. I have to buy pants in larger sizes to accomodate my bulging waist.

My skin and body are always sore. I have to wear soft, loose clothes and shoes, and even then, they usually hurt me. I prefer to be in my flannel pajamas and housecoat, so it is rather difficult to feel beautiful.

My body is so out of shape. I love to work out with weights, to be in shape, so this part of it is very difficult for me.

Most days I can barely walk around my house, let alone go out and do any shopping. It is very hard to clean my house, so I need lots of help from my husband, who is gone 11 hours or more every day for work. He is great! He loves to help me, but at the same time I can't help feeling like all these tasks are my job since I'm home all the time. I think it's more stressful for me than for him.

I think depression over the loss of any kind of 'normal' life is probably one of the biggest issues. It's hard to lower your expectations to a feasible level for this syndrome. However, at the same time, this has taught me and my husband to love each other and care for each other more, and to value even more the time we have together and with our kids and family. Also, I have had to learn to trust the Lord so much more for just seemingly little things life making it home when I have to drive somewhere, or just making it through the day. I'm still learning.....

Dont know where to start!



My life has totally changed.

My first problem was adjusting to the anxiety of being out of hospital where I had nurses and docs with me 24/7. I was in constant terror of being on my own. I had problems breathing which made me feel like I was about to die. I couldn’t do anything for myself-was confined to the sofa as I couldn’t get up/down stairs. Every minute was agonising and felt like eternity. I couldn’t see any future which made me depressed.

The worst part is relying so heavily on others. Family had to do everything for me. And appointments with doctors became the centre point of my life (and still are). Work and college friends became less interested in seeing how I was as weeks as months went by. One of my worst memories is when a medication I tried made me even worse. It was Christmas and there was no way to see any docs. I couldn’t eat or sleep. I hated being bitter but I resented everyone else being happy, opening presents while I couldn't even move. Then I would feel guilty and even more depressed.


My life now is a fraction of what it should be. I am better than I was thanks to a mixture of tablets which I rely on everyday. I constantly fight against the depression of how pointless I feel my life is. Most of my days consist of me laying down-resting in front of the tv-alone and I feel like my life is wasting away. Simple things like going up the stairs or having a shower are no longer simple and take up all my energy. I feel ill on a daily basis- I havent managed to get through a day without a debilitating symptom. I have never got used to feeling so unwell and Im not sure I ever will. I had to give up my job. I had to drop my university and at one point I didn’t leave the house for 6months.

Things are unpredictable. Some days I can walk around the block. Other days I cant even get out of bed. I accept that I cant go shopping, or many of the other things I used to do.

But I cant get used to watching my friends get on with their lives while Im left feeling like my life is 'on hold' and I am left constantly wondering how things can ever get better.

Thank you guys for your feedback, keep em coming.

Let me tell you this diorder has played havoc with my life. I used to be able to hold down a 7-3 nursing job without difficulty. I was just fired from my job due to attendance, even though I explained thoroughly the disorder. My self esteem is very low. Some days it is so bad that I just lay in bed and barely have the energy to get something to eat. I feel like it has taken away from my children because I don't even have the energy to take them anywhere. I now am attempting to find a per diem job, and have had some nibbles. I do not have very many really good days, but make the most of the ones I have.

Nadinez, thanks for your honesty. I too lost a very good job with benefits. I always used my vacation days in the hospital,so I was let go. It crushed my family and I

POTS has changed my life. I lost jobs, friends and credibility because nothing was showing on bloodwork initially. I was a very healthy individual, extremely active with a lot of friends (at least I thought). By the time I had gotten my diagnosis, I was an emotional wreck with no friends in sight. I guess this has "numbed" me somewhat as a human being. I cried a lot in doctors offices in the beginning because no one would believe me. I literally had to train myself to be unemotional so that I came across more credible and because once I started crying, my POTS kicked in even worse. I truly believe this is one of the causes of my adrenal problems. I kept everything in because I didn't want to burden family and I didn't want anyone to think this was a psychological problem. This is a pretty sad world when we have to retrain our emotions in order for someone in the medical field to believe us.

I work in the medical field so this was even more devastating. I had such respect for doctors at one time, now I don't. It took me 4 years and about 80 doctors to finally get the proper treatment. God only knows the cumulative damage done to me prior to getting proper care. And, not once did one of my doctors think of the financial devastation on my family.

This has made me stronger as a person but also has caused me not to trust those in the medical field. I was a very kind, giving, happy, optimistic, outgoing individual. I'm no longer outgoing and I'm certainly not as happy, optimistic and giving as I used to be and that's a shame but this has killed a part of me inside that I don't think I'll ever get back.
And as for friends - I have few true friends. This has caused a lot of damage to my marriage.
I will never be the same.

Good luck on the book.

As an addendum to what I wrote before.... I have been very depressed and feel isolated with this disorder. My main problem is that initially my BP would go really high (260/160) and drop suddenly, so the doctors initially all thought I was not taking my BP meds and told me they could do nothing if I was not being compliant. I have no friends where I live and now no job...hopeless is how I feel. I have attempted suicide 6 months ago and my husband convinced the hospital that he could take care of me. Anyway this is also how POTS affects me.

Deb, I understand about loosing friends and family. I lost my parents and relatives because they dont think anything is wrong. I find after talking to thousands over the years most of us were happy and active before being hit by dysautonomia. Then all of the sudden we would lose our credibility to be heard. I actually have a chapter in my book called, I will never be the same. So, it seems we are son the same page. We need to stick together and help each other, that is our purpose now.

Nadi,
I appreciate your honesty on how you feel. Having no friends and no job does make you feel alone and sad. Please know that I want to be your friend, I understand what you are going through. IT has been hard on my husband too. If you would like to keep in touch my email is
la745773@mindspring.com
I am thinking of you. I can't wait for my book to go to publishing, I feel it will help others understand such as family members. If you ever feel like giving up email me I am always here, I am homebound. I really do care about you.
Lynn

I think it is great that you are writing a book. The isolation that dys leads to is terrible. I think it will comfort those with dys to know that there are others out there going through the same thing. They could even give your book to friends and family so they would understand what we are going through. Except for contributors to this forum, I have never known or even heard of any family or acquaintances with dys. Neither had my friends and family, which makes it really hard for them to understand what is wrong with me, why I am STILL sick, why I no longer go out with them, or make any plans for the future. I have a job and right now am on leave..but soon they will tell me to return or quit, and I know right now that I will be unable to return to work anytime soon unless some miracle cure occurs. The loss of my job will mean even more isolation. What do I do all day? After being an incredibly active and busy person all my life, I now try to stretch out the morning coffee and newspaper, do the crosswords, check and recheck email in case I actually get something, plan dinner and walk slowly through the neighborhood on my small grocery errand, make dinner for the family, watch TV and go to bed, resting up for another similar, empty day. I have tried hard to find meaning in this type of day, and suprisingly, despite everything, feel that my life is a gift. I have all the time in the world for phone calls from my children, mother, and siblings; I cook a comforting meal for my family every day; I have taken up tai chi and work hard to remember a growing number of steps - learning to work toward a personal and solitary goal that will not lead to any promotions, raises and public acclaim. My husband is accepting, for which I feel lucky. Yes, I wish I could have my old life back. I think that several times each day but it won't happen.

MEB, I have a chapter in my book on what dysautonomia is. Coming from my cardiologist and then myself in simpler terms. Then I have some help chapters, in one of them I have put things others can do to help us if they are our friend. I think after people read my story they will understand better about the condiiton and also the struggles we go through daily to just exist. My husband is great too, except he works three jobs for all my medical bills and stuff, I feel alone here. I was so active before this crept into my life. But God has a purpose for it all. I am so glad you can cook, that means alot to your family. Nice meeting you Lynn

Baxter - would it be ok if I email you my info b/c my long bumpy road might take down the server