all4family

Ok, I wasn't going to add this to my list of things to worry about, but after everything here I think it might be worth looking into. I can do the thumb to my arm thing, and was previously very flexible. Now it hurts too much. But my daughter in her gymnastics class was able to go to a flat pancake split without ever trying. Everyone oohed and awed, but now I am concerned about this. I used to be able to do splits very easy. Almost no stretching required. I have a neck that "pops" all the time. It is very painful, and keeps going back to the same position. I also have shoulders that are messed up bad. I had a Dr tell me she specialized in sports injuries, and had never seen a shoulder that knotted. And when my husband massages it it pops over and over. I just keep hoping it will "fix" itself. Many other bones pop too. But the part that bothers me the most is the vasculitis type that has been mentioned. I have 3 valves in my heart that leak. Does this sound like I should look into this? can leaky valves be an indicator of this? Thanks Suzy

Hi Julie, I don't know what Mayo you are going to, I am assuming it is the rochester one. I went to the one in AZ. It turned out to be a really good experience. They were the first people who didn't push me to do testing that might make things worse, and didn't prescribe me drugs, because I told them what a hard time I had with the drugs. I am scheduled for a EGD on Monday, and it is without sedation. It was actually my sensitivites to drugs that led the doctor to suspect the dysautonomia. (I think because she said something about it) If you are nervous you can always go, and see what they say. You have a right to refuse any test, and any medication. From my experience it was very positive. I hope this helps you. Suzy

Hi Pat57, I am glad to know I'm not alone in slow-mo. It's good to be able to laugh at these things, and my husband is a comedian always. Helps me laugh at myself. I am glad he gave you a laugh too. Suzy

Hi Miriam, Thank you so much. That is so thoughtful and generous of you. I will PM you tonight. Can I send you some money for them? I know you paid for them. I would feel much better if I could. Thanks. Thank you so much Pat57. That helps to know. I have been "informed" before that if you refuse medical help they can refuse you. That is why I went. That is also a gem to know that I cannot refuse a second time. At least that gives me one faint per day! ha ha. I don't think I am in any danger either. It has happened enough that I am less afraid. But others really freak out, as a friend of mine said. (Hi) I was even joking with my husband about the bbq sauce to try and keep a good attitude, but then they just think you are playing around. Guess I just can't win. As for me I had another I guess faint yesterday. I explained it in the post about the fainting with the cookies. I am vomitting again, can't even keep liquid down which doesn't help. and am back to almost as bad as the begging of this journey for me. I am back to being unable to do anything. I don't know if the ear infection has anything to do with it. The last time I had one I thought it wasn't an infection. Still do. But it started a year of completly disabling symptoms. I am back to being sick enough to not really care WHO thinks I am just anxious. I have a EGD scheduled for monday, but do not think I will be able to do it. I hope things are going well for everyone. Take care of yourselves. Do what you can when you feel good enough. Suzy

I also have this experience. I had it very severe for the first 3 years I was sick (24 hr a day). I thought it was from the medication I was on. It did improve greatly after getting off the medicine, but I still get it. Suzy

Hi Nina, I am so sorry for your experience. I am glad though that you didn't have the added experience of an ambulance coming. You did so well handling youself. I am glad there was a smart, and kind nurse there to help you. I hope you rest, and are feeling much better now. Take care of yourself Suzy

Hi Candace, I am so sorry this happened to you. I know it can be a frightnening experience, but it sounds like you did well handling yourself, and hope you pat yourself on the back. I have a lot of trouble cooking also. I am glad the cookies made it out ok. I would hate to see all your work go to waste! I also wanted to ask you if anyone saw you when you fell like jell-o the second time, but didn't lose consiousness? The reason why I am asking is because that is how I feel when it happens to me. Like jell-o going down. I have told the doctors I don't think I am really fainting, but last night I was bent over and stood up and got the head rush, I felt like I was going down, and aimed at a safe place, and fell slowly so I wouldn't hurt myself. But I didn't lose conciousness. So that is how I described it to my family who laughed hysterically at me and asked if I remembered the kleenex box up my nose. My husband said he'd seen airplanes fall out of the sky more gracefully. I truly thought I had floated to the ground in slow motion. I hope this was just a one time instance for you. And I hope you are feeling much better now. Suzy

Hi all, thank you so much for the support. Jennifer, thank you again for the support. I am feeling a bit better, but think that my ear infection is making things worse for me. Janie, Thanks for appreciating my humor. I have met many wonderful medical people also. I am sure you were very compassionate, but will probably be even more so now having been the patient. I would wish for a nurse like you for anytime I needed help. Jan, yes I agree 66 times is a lot of times to go to the ER. But like you said they don't know the whole story. Most of the visits were in the very begining 5 years ago. When I was on different medications. They were not recognizing the severe symptoms I was having as reactions to the medications. I lost 120 pounds in about 6 months. My urine was brown, and every drug I took had different reactions on me. like shooting my hr to 170 where it stayed for over an hour. My urine had turned dark rusty brown, and while I know that is not an emergency that is just the level of sick I was. Many of the visits were faints. About 15 were transfers from other doctors who said my EKG looked like an MI. I tried going to the doctors, but wasn't getting anywhere there either. 2 were injuries from falling. several were I called my doctor and told them my symptoms and they said they can't treat me for that I need to go to the ER. Not knowing what was wrong I was trying to get help. One day I realized that no one was going to help, so I stayed at home in bed because that was the only life I could have. That is when I quit going there. And if they looked they would have seen that other than one fall, 2 faints, and 2 transfers I hadn't been there in 4 years. I also had quit going to doctors. I quit the medical comunity all together, and decided whatever happened would just have to be. I didn't want to be at the doctors any more than they wanted me there. Even less. My heart rate for some reason is shooting up really bad today, and I don't know why. My oxygen at the hospital was only 90. Don't know why. But this is how it gets just before I have a real big fall. I hope that is not the case. for the last couple days even sitting seems to be something I can't do. I guess I shouldn't care, but I do. Suzy

Hi Angela, You know before I became sick with pots I never used to get sick at all. I never saw a doctor except to have my babies. I never had even had the flu. When people talked about body aches I didn't even know what that meant. But all my symptoms started after I got my first flu shot. I also got my kids theres at the same time, and they had never gotten the flu either. My husband was the only one that didn't get one. The interesting thing is that year I got the flu REALLY bad, and so did both of my kids. My husband was fine and never got sick even in the same house as us. Every year since, Me and both my kids get the flu. My husband still does not. That is also when all my symptoms started. So I don't know if it is related to pots or not. Also I had a "ear infection" last year that completly closed my ear. But healed without antibiotics. I have it again this year. I don't know the answer to if it is related at all to pots, but I know I never used to get sick with almost anything. I hope this helps you. Suzy

Hi Susan, Thank you so much! I needed a good laugh like that! I feel so sad because I love the town I live in it is beautiful, but the hospital here is really bad. I don't mean to gripe so much, but they really leave a bad taste in your mouth for the medical community. I know I am not the only one,because I have heard so much from so many others. And have seen so much too. During my 66 visits of course! And you know I thought about that, that only works out to just a little over one visit a month. Considering the number of days I was sick for that is conservative! Almost anyone you talk to in our town has had a bad experience with it, so that should make me feel a little better. Maybe we could start a sick person mafia! We will kick all mean medical peoples butts!!!! Thanks so much for the support. It's the people here who's oppinion matters more to me anyway! The people here have hardships that most of these people will never understand! If they ever had to struggle or watch a loved one struggle they would have a different attitude. ( I would hope anyway! ) It's hard for me to get down, when I know so many people here understand and care! Not only that they know how to laugh at stuff!!! Thank you so much! Hugs Suzy

Hi Thankful, I thought I had answered this post, I am sorry I missed it. My paper work also said to improve general fitness. Do most doctors think that pots is due to deconditioning? When I first got sick I was fairly active. With 2 kids I always took them to do sports, and on bike rides (where I walked) I feel like I became de-conditioned as a result of not being able to do things. But I don't know. Do you think you were deconditioned before you got pots? I was also told to raise the head of my bed. I haven't done it yet though. I would really like to see some relsults from exercising. The funny part is I was overweight when I got sick, but very fit in the sense of I exercised a lot. Just guess I ate more than I exercised. When I got sick, and was doing almost no exercise I lost weight to the point I was told I was anorexic. But I did no exercise. So I guess I am built backwards. I would be so happy if I could do the things like I used to. That is why this exercising is so important to me. Well I hope we can recondition ourselves so we can get on with life. Thanks so much for your help. Suzy

Hi, What tests did you have? I had a ACHR.gangle.NEUROL.AB which is actually part of a paraneoplastic syndrome antibody screen. that is a different syndrome to do with cancer, but this test also relates to pots. And when I was told that I had a positive test to this the doctor told me they were checking me for a neurological autoimmune disease. So from that I gather that mine is of autoimmune nature. Before this test was performed on me I was tested for lupus, but that was negative. I think that was an ana test. I think I may have had another ana test that was also negative. Hope this helps. Suzy

Thanks again EarthMother. That is a gem, and I will make me some, and do like you say.I knew I would eventually have to get a local doctor, but hoped I would be able to go to Mayo for everything. And yes they will have to drag me kicking and screaming. I knew I swore off ERs for a reason! They are bad for your health. Thank you so much Suzy

Hi Candace, I am so so sorry for how you are feeling. I completly understand what you mean. I can't tell you how many events in live I have missed. And I know the pain of sitting in the car. You feel like why not me. Why can't I do those things? I have spent countless times sitting in the car where I wanted to be doing things. And it is more painful than someone who hasn't done it can imagine. Please don't think you are complaining. You are just saying what your heart is feeling. Complaining is the person who gets to do those things, and still finds something wrong with it. Like "I don't want to go HERE". I want to go anywhere I can. I think I get along so well with my grandma who is 82, and has emphazima because we can relate to not being able to do what we did before. I would like to have friends over and play cards or something, but we do not have friends anymore. I lost my last friend because I couldn't go to her baby shower,and she told me I wasn't a very good friend to her. I think it is hard for people to understand why you can't do the things they want to. But that doesn't make it easier when you feel left behind. It always makes me think of the young child who wants to be invited to the birthday party, but didn't get an invitation. How sad that is. Your body just forgot to get the participate invitation. I am so sorry for that. On the bright side I have learned more creative ways of participating with the family that is willing to make accomidations. Like laying in the livingroom and playing games. Instead of sitting. I hope things turn around for you soon. And here is an invitation for you to complain all you want. From me to you. take care Suzy

Hi EarthMother, Thank you so much. I sure wish they still sold those. I tried to tell them more than once what the name of it was. I used pots, and orthostatic intolerance, and dysautonomia. The paramedics were real nice, but one really wanted me to go to ER. I don't know if I refuse, if they will come back for me if I do need them next time. I was fine with the paramedics, but the ER staff who at least one remembered me was very hateful. If I would have had a card like that I could have at least given it to them, and not had to talk to them. I have a primary physician officially, but when I had my second bout with this illness I asked her to check me for rare things, and she said you don't just run off testing people for things for no reason. (I thought fainting was a good reason) so when I told her as nice as I could that I really didn't think all this sickness was in my head she told me to go to Mayo clinic they would test me like I wanted to be, but when I was done there, and they couldn't find anything either would I come back and admitt it is mental. So needless to say I have not gone back to her office, because I can't just tell her it was mental. I haven't found a new one, because I went through most of them trying to get diagnosed with something. And after each one ran one test, if they even did that they said I can't help you if you are not willing to take medication for deppression, or anxiety, or whatever that doctors flavor was. We have very few doctors here, and even less good ones. There is a tight knit between them all, and I was told that they run the hospital. whatever that means. I at least know I am not the only one who has had extremly bad problems here. It is well known in our town that the medical is rather poor. I am sure there are some good docs, but have been told they leave quickly because of all the problems here. I am so sorry you have been housebound. I know how painful that is. And if you tell someone(at least for me) they say you have that social phobia that I can't even remember the word for. When I decided I wasn't going to let them lock me up or do some of the other things they have done to me in the past I quit leaving my home. My husband does all the shopping, and I usually don't go anywhere without him. But it is so limiting, and I want to so bad. He has been feeling sick, and I wanted to make him a nice dinner, so that is why I went to the store. The only thing I needed to finish the dinner was the barbque sauce. Do you know why they stopped selling the cards? Thanks for the support. Maybe I will find something on it I can print. Hi Jan, I would like to keep going out, but am really worried about ending up there again. That is a good idea though about carrying something. As I said above I am going to find something to carry. My husband drove me home from the hospital. I started feeling bad, and they had already called him so he could come and drive us home. He just didn't get there before I fainted. Suzy

Hi Lisa, Thanks so much. I need all the encouragement I can get. I am trying to have a good attitude, and not get down. I am trying not to think about it, but it is kind of hard to forget about it. Thanks for listening,and the positive words. Hi Jan, I really wish I had refused. I guess because I was so cold, and my heat was going so fast the paramedic just thought I should go. I didn't know what I should do because when I fainted before it scared me, because I didn't know why. I have to admitt this was the first time that I wasn't really terrified. I was embarrassed though. The only thing they did in the ER was a EKG. The doctor didn't even come back in the room and let me know he was releasing me. Or why. The nurse walked in, and acted like I shouldn't have come there and wasted there time. Then said real rude are you ready to go home? I said yeah. She left and the other one came in, and said real nasty call this number. (physicians referal) and get yourself a doctor, and stop coming to the ER. I am sure you have been told this before. You have been here 66 times. (yeah in the last 5 years, and I didn't know what it was that was making me so sick. And I have been to many local doctors who treated me the same as the ones in the hospital.) I tried to stand up to her, but she pushed the pen in my hand, told me where to sign the paper and walked out. My husband was with me, and he was really angry. Yes it was a waste of time and money. I tried to make light of it joking about how I wanted my barbque sauce, awful bad. No they didn't give me I.V fluids. So I am drinking lots of water. I was picking out gatoraid when I started feeling real bad, so I am going to go drink those next. I have been downing water. Lets go kick the butts together. With friends like you I can see me standing up and fighting. Thanks for the support. Hugs and thanks Suzy

Hi Bri, I just wanted to say hi and welcome. I am also pretty new to this, and don't have a lot of answers for you, but you will find a lot of answers here. I really get what you are saying about the drinking. Do you feel like you slosh when you walk? Did your doctor tell you to eat a lot of salt? That was my really hard one. But it is getting easier. I hope you find the answers you are looking for. Your in good and kind company here. Suzy

Hi, I was shopping, (I was using a scooter) but started feeling bad. I only had barbeque sauce to get, so tried to get it, but went down on the scooter. The paramedics said I need to go to the hospital, so I reluctantly did. They did an EKG, and then someone came in and said are you ready to go home? I was more than ready. But when I was signing out she told me I need to get a regular phsician so I can quit coming to the ER. then told me how many times I had been there in the last 5 years. So what do I need a physician for? Is the ambulance going to take me there the next time? I told them what I have, and they acted like it wasn't even a real disease. I don't want to go there period. How does every one handle being in public and having this happen? No matter what everyone will believe it is anxiety. And it seems that even with this diagnoses I am a second class person to them and do not deserve to be there. This is the reason I just started staying home all the time. If I faint there no one is mean to me. But armed with the diagnoses I was getting brave and trying more things again. Does the medical comunity in general not take this as a serious illness? I won't be leaving my house again. I feel as though I am a prisoner here. Has most people been to the ER many times before dignoses? How do you have a life when you are made to feel like a criminal or nut case when you faint? When the paramedics first got there my heart rate was 140, and I was starting to feel better. Don't know how high it was when I went down. Some amature doctor in the back said it's anxiety. By the time they laid me on the stretcher and drove me to the hospital I was feeling much better. And of course the comment was well your heart rate is fine now. Yeah, and I am laying down now. I wore my heart rate watch walking out of the hospital, and by the time we were to the front door it was 130. to the car was 140. Now at home if I am standing it's running 130 to 140. Will I ever have a life with this disease? Thanks for listening and giving me a place to come where I don't feel so bad about myself. It's not bad enough to have this problem, but the lack of control of when and where it happens makes you feel so vulnerable. Suzy

Hi Earth Mother, I think that is a great idea. If you need any help with the computer making a graph or something my mother is really good at that stuff. Let me know. Suzy

Hi, I have had many problems with my vision. Most improved after getting off some medications, but my worst was this almost hazy look. It seemed to come when I was feeling my worse. I also have had double vision, depth perception problems, (I don't know if that is related to vision) Unable to see things clearly especially like large buildings just looked fuzzy and strange. My eyes feel like they are jumping, especially if I move to quick. The absolute worse vision problem I had was there was something like a black outline around my field of vision, then it got bigger and bigger (the black part) until there was only a small hole in the center I could see out of, and couldn't even tell you what I was looking at. I (hysterically) got my keys to go to the doctor, and tried to find my way out the door, until it hit me I couldn't drive! I couldn't even see! My vision ended up completly black like I was 100% blind. This lasted for about one hour, and was very scarey. When I did go to the doctor (with a well visioned driver) she said it sounds like a migrain. I have since never had that severe of problems, but do have little things that look like bugs, and the hazy thing is still there. I don't know if it is related to dysautonomia or not, but it is very frusterating. It also improved dramatically after getting off of medications that were causing many more issues than this. I hope this helps some to know you are not alone. take care. Suzy !

What wonderful news. And bravo to you for all the love and devotion you give to Sara. I am sure that love and dedication brings her so much joy. And happy birthday to you Sara Suzy

Hi AJW, Thanks for asking. Unfortunatly I have a ear infection making my balance worse than usual, and my knees keep giving out on me when I stand. I feel sometimes like I am 80 years old. Every part of my body is painful. I did the laying exercises 3 of them 2 times each, but didn't do the standing ones. But it seemed to put more pressure on my ear which is already so painful. So I am being lazy today. I would just like to get "fit" enough to go shopping and not look at the cashier wondering why she can't move a little faster! Thanks so much for that help. I do need a guidline of somekind, and that is very helpful. Hi Thankful, How did your PT adapt the exercises for laying down? Maybe if I start that way I could work my way to standing. Has anyone completly reversed their pots with exercise? I am starting to see this is for improvement, definatly not a cure. I do have a heart rate watch, and found interestingly enough that my heart rate goes down just a bit when I do a fast clip walk. But then goes up real high when I stop and stand still. It also goes up progressivly climbing steps. I would think if I were just unfit it would go up no matter the activity. But what do I know. Thank you for the help. I will try to adapt my exercises somehow for laying down for now. Suzy

Suzy- Very interesting that all your D-dimer tests come back high. Mine do too, and not just a little high, off the charts high, but no embolisms.... I was told that it was also a marker of inflammation, but haven't found that information anywhere. Maybe we can unravel that mess. Sara That is very interesting. Thank you for sharing that. I also get strange swelling in different places in my body like for the second time right now I have a "ear infection" I think. my ear swelled so big it was closed. They couldn't even put the odoscope in. During the same time OTHER parts of my body swelled, but I don't know why. I didn't know that was also a marker for inflation. I must admit that is quite a relief as I have turned down many ct scans due to the dye. I always would worry if I was doing the right thing. But I am still here, so I guess so. It would be nice to unravel any part of this crazy mess we all live with. Thank you for that information. Suzy

Hi cat lady. That is so interesting, and yes it makes you think all these things can't be happening to so many of us, and there not be some connection. I sure wish they(the rashes) left as fast as they came. I used to get them as a child, but only occasionally, and I can remember my mother thinking that it was from something I touched, and rubbing meat tenderizer all over it. But once I became sick I started to get them all the time. I must have got my RH- from my dad. Because my mother has a positive blood type. And my dad had some "mystery illness" of fainting when standing, and low blood pressure. I sure hope my daughter doesn't get this. She already has hives, and allergies to both medications and foods. She was my first, and her blood type was positive. My second pregnancy I had a miscarriage. My son was my 3rd pregnancy. His blood type was negative, so there was no threat to him. I often wonder if the second pregnancy was lost due to the RH factor. Suzy

Hi again, My mom had an anurism at the age of 49. She luckily survived it, as it stopped bleeding on it's own. So I will definatly look into this. Thank you for that information. And you are welcome. I know what you mean about coming here and feeling better. I just recently had an entire breakdown here, and found such nice support. Take care, Suzy